Journal of the Plague

PREFACE

At the end of a long stretch of lawn on the Capitol Mall lies a green depression,

deceptively serene and muted. As you approach, it appears like a buried black wall, a bunker without an entrance. People move quietly along it. One woman is about sixty. Her hand

slowly follows the thousands of engraved names on the wall until she stops at one. It is the

name of their son killed in Vietnam. She turns to her husband and they both begin to cry. The

names of the other fifty-nine thousand soldiers who died in Vietnam are also engraved on that

wall.

Some more names need to be added, those who died after l973. They are the soldiers

who came home and were devoured by the memories of war, alcohol, drug addiction,

hopelessness, and AIDS. The last battle of the war is still being fought in the crack houses of Harlem, the shelters and streets where the homeless live, and on this AIDS hospital ward where I work called Paradise Alley.

In this journal of the plague, I have tried to embrace not just the memory of these

soldiers; but their fight and struggle for dignity. It is a battle with few victories, the only

victories that can be claimed are those of the moment: A day without pain, a few pounds

gained, or another step taken. That is the victory.

We are only in the beginning of this plague called AIDS: Acquired Immune Deficiency

Syndrome. Despite the flood of information, it remains more enigmatic and elusive than ever before:

What does AIDS mean to us as a society and as individuals? How do we respond when it

strikes a friend, sister, lover, or brother? If we are caregivers, how do we survive this work?

Plague and pestilence has defined more eras than the virtues of love or courage. Each

plague says something unique about the time that it occupies. In the Middle Ages, the Black

Plague devoured more than a third of Europe. AIDS stalks the land and what does it say to us as we begin close this second millennium? How does it speak to us about love, isolation, and community? What lessons does it teach us about healing and being human?

This is a journal of the Plague, a journal of living and working with AIDS.

PARADISE ALLEY l January I am a nurse who works on an AIDS ward in a veteran’s hospital, where there are sixteen beds

reserved for men with full-blown AIDS and tuberculosis.

The ward is twenty south. One man called it Paradise Alley, because it was someplace between

heaven and hell. As you walk through the door of the ward you are confronted with a thick collage of smells: antiseptics, deodorizers, cigarettes, and dime store cologne. As you move further down the

hallway with its tan brightly polished linoleum, there is the slight stench of a nursing home, the smell of

stale urine cloaked in a dense veil of deodorizers. There is another smell that is omnipresent, though subtle, death and fear.

The fluorescent blue supermarket lights bathe the tan walls and floors in a strange purplish

light. Even the lacquered pictures of Swiss mountains and fields of heather seem sterile and devoid of life. The rhythm of the ward is set by the continuous mechanical breathing twenty-fours a day: the

hum of air compressors, fans, the beeping IV monitors, and the occasional respirator. The pulse is steady and measured.

There are ten rooms, two of them hold four beds, and the others are single bed units. The single

bed units, rooms l6 through l9, are for those closest to dying. Three of them are supposed to be

reserved for those with tuberculosis, but most often there are more people with TB than rooms for them; however, it doesn’t make much difference. The rooms, which are supposed to be specialized

units to minimize airflow and the spread of TB, don’t: The air circulation is too poor and the rooms

aren’t properly set-up as isolation rooms.

Most of the patients are Black and Hispanic, as young as thirty and as old as sixty-five. Many

have been homeless; others have families, children and even grandchildren. There are alcoholics and

I.V. drug abusers, many of the men have been clean for years and are now fighting for a little more

time. There are gay men -- White, Black and Hispanic. There are even the one or two straight men who

insist they’ve never touched a needle or looked at another man twice. Some of the men have

supportive families, but most are alone with few visitors and few telephone calls. One man who had been here for months refused to tell his family. Even though he was dying, he didn’t want them to know.

Few visitors know when they walk onto the floor what this place is. It is called 20 South, but it

doesn’t shout with neon signs that it’s a ward for those with AIDS, it’s just 20 South, a floor and a direction.

People visit and ask, “What does he have?”

“Hasn’t he told you? No? Then you need to ask him.”

You can see the visitors trying to peel back the mystery, “Why is he dying?”

“That one over there - why can’t he breathe?”

“Can you tell me when my brother will be better?”

Though I want this Plague to end, not yesterday, but ten years ago, tens of thousands of lives

ago, there is a part of me which marvels at the anarchy of this disease and wants the cool logic of

medicine to be stymied: For once to be awed and humbled. Scientists can dissect the disease and track it down to the very core of the DNA cell, but can they understand its motives or the dreams of its soul?

Regardless of the miracle of science, I am left with this deep abiding hunger for humanity in this age of isolation and science.

“If we can make this body free from microbes, then we can arrest the disease and cut it out,”

said an intern the other day with a boyish enthusiasm.

I would like to agree, but it’s not true. Illness is more insidious and sly. If healing were only the

magic of chemistry and biology, we would all live to be as old as Methuselah.

Today I give the pills dutifully, like a priest who passes wafers of communion, pronounces the

virtues of heaven and hopes that all will be right. From my hand: What do I distribute? A freighter load of hopes filled with as much veracity as a politician’s campaign promise?

When I tell the person, “Yes, it will help you, it will cure you, it will ease your pain.” Is it the

power of the pill or the power of the word that I’ve offered? Is it my compassion or conviction that will

triumph? Will my role as a Health Care Provider transform that pill or shot into a salvo from heaven or will it be a lifesaver thrown to the drowned? I tell myself that no matter how feeble or vain it may

appear, it is something to hold on to, and it buys a little more time, and maybe - - just maybe - that little

more time will find that `one cure’. Don’t laugh, the entire cancer industry is built on that hope. Has

AIDS already turned into an industry? The answer is painfully obvious. Boroughs Welcome stocks are doing quite well. At each turn of the day, I ask myself, what lies and myths do I perpetuate.

Jim is leaving today after a two-month hospital stay. He looks gaunt and refuses his medication.

I tell him the pills will help. I know this is more bullshit and I think he knows it as well. He is dying and in six months or a year it will be over. His hospital referral slip is left behind. He has no money and

asks around for chump change from other patients; he has all the moves of a street hustler. The magic that sustains the street hustler is that there is always another chance, a little more, a bit further --

another opportunity will happen.

Another patient, Jose says, “Do you know how long it will be before he is out on the street

selling his medication for a fix?”

Life on Paradise Alley often feels like the Hemingway story “The Killers” where the people

were waiting for someone to come into town. The patients are waiting for something to happen or to change.

2 January WILLIE:

Willie Sanford has been on the Alley for the past week, a recovering alcoholic and drug addict

with end-stage AIDS emphysema, and renal failure. He says that he doesn’t understand when they tell him about his medication.

I ask, “What don’t you understand?”

In his thick Southern drawl he says, “I don’t understand about my disease. They tell me what I

got, but it don’t make no sense.”

His face, hidden behind the oxygen mask, lights up. His body is vainly trying to suck up each

molecule of oxygen, as desperately as a crack addict sucks on the bottom of an empty pipe. His lungs are destroyed, they can’t ingest enough oxygen. He is suffocating. It is like being in a pool of fresh

water and dying of thirst. Today I value even more how sweet and delicious it is to breathe the air; even the stale air of the city feels very fresh.

I explain to Willie about his medicines and probably for the hundredth time about AIDS. When

I find myself repeating information that I carefully and clearly told him before, do I still respect his dignity and intelligence? Or is my ego getting in the way?

He has the radio tuned to a jazz station day after day, the chaotic wails of Coltrane echo

through this bare room. He looks out the window towards the East River while tethered to the oxygen

unit on the wall. Most prisons wish they could have an isolation so intense. I think of the phrase, “In my

soul I am free,” but the freedom to choose life or death, addiction or not, has long since been surrendered.

I find myself as an observer and participant so freely engaging in judgment. So much of this

medical business is based on judgments, like Moses or some other Biblical figure deciding the balance of right or wrong, even life and death.

When you look at someone, the first judgment is appearance. Are they neat? Slovenly? With

my patients, even those who are terminal and comatose, I make sure they are clean and shaved. If they look like a bum, they will be treated as such. It is the small changes, sometimes, which make for an

enormous world of difference. Often as Health Care Professionals we do something at or to a patient

we are working with, but compassion is the rare ability to work with passion and care, not merely to suffer with that person. Do we allow ourselves the opportunity to work with someone like this? Our

work environments and training compel us to act from a professional distance, at arm’s length, when we most need to hold and cradle, comfort and love, and act with compassion. What prevents us?

3 January

“CUTE BUT TOUGH?”

What can make this AIDS ward more than just a place where people come to die or to gain a

little more time? Maybe it’s a little humanity that makes the difference, both towards each other as

Health Care Professionals and with the patients. My work with the sick and dying, is not an impersonal war with a disease, but at its root I’m healing (making ‘whole’) myself as well. I’m learning to put aside

my impatience and work consciously without hurry.

Illness and crisis challenges us. It compels us to find the best in who we are: that gram of

courage and patience, a measure of dignity, the willingness to bend, and the strength to stand for our

convictions. This is the real challenge that is offered here on Paradise Alley, both for patients and staff.

Do we take up that challenge or do we refuse? Do we have the guts to fight? The Chinese symbol for crisis is made up of the figures: danger and opportunity

A young resident, Naja, new to the unit, said to Clement as she notices him taking off his

uncomfortable and hot oxygen mask, “Your oxygen levels aren’t good, you’re not using your face mask often enough, if you don’t keep that mask on all the time we’re going to intubate you. And then how would you like that?”

This twenty-four year old Indian woman is talking to this forty-seven year old African-

American man as if he was a naughty child. He is too sick to fight back and meekly puts his oxygen on

again. An intern is standing next to this resident and mutters as he walks away, “I cannot believe her.”

Does this place really offer the opportunity for healing? HCW’s and hospitals too often foster

passivity and rob people of the little power they have over their health and the choices that they need

to make. We have permission slips for “Do not resuscitate” or permission for this and that, but so

much of the decisions are denied. For example, men come in here to have an indwelling I.V.line, a

fairly simply procedure that takes an hour by a trained nurse, and it winds up taking as much as two

weeks because there is in-fighting between departments: the surgical department doesn’t like taking

AIDS patients. The patient’s time is considered secondary to that of the hospital. One doctor said “So

what if they’re in here for a week or so, what else do they have to do?” So they wait and wait, and are branded as “difficult patients” if they speak up and complain. And if they complain too much they’re

given a sedative.

The irony is that health is largely an active choice and it demands that you’re an active partner.

Sickness and well being are also choices that few of us realize we have until it’s too late.

Tyler, a new patient, comes to the unit and shortly afterward a friend of his calls on the phone.

I answer and then call Tyler to pick it up. Later that morning he takes me aside and says, “You know

my friend asked me who you were and I told him you were the nurse. He said, ‘He sounds cute but tough.’“ Cute, but tough…a new moniker?

7 January

Up at 5:30 a.m. wandering around getting myself together for the last half-hour. Last night

when I came home, one third of my bedroom ceiling had caved in; as if my life was a little too boring and needed a little distraction.

Yesterday morning I started off talking to Day, a twenty-year IVDA, Vietnam veteran, whose life

after the war followed a trail more sinewy and difficult than any he could have taken in ‘Nam. Day is a speed-ball king, mainlining heroin and cocaine, and alcohol for those moments in between. His skin is

parchment yellow and his face has the haunted gaunt and frozen look of a walking cadaver who, by all rights, should have been dead a long time ago; but he keeps moving forward, one step in front of the other. He said, “I don’t need no Narcotics Anonymous, no treatment program, only the love and support of my family.”

I hope they are always there for him and as available as he’d like them to be. He lives with his

mother in the house he grew up in northern New Jersey. I know the town, there is an old fashioned cemetery at the end of the block, and stately oaks and maple trees shade the granite and marble

mausoleums. His sixteen-year-old daughter lives with his ex-wife in a neighboring town. Day says, “I

can’t keep it together, I’m one hundred percent service disabled and it’s hard to keep the money. Hard

to keep that money from turning into a little… recreation.”

What can I possibly say to change how he is? Not a whole lot. The critical thing for me is to

recognize I can’t really do anything for them. Sure I can offer comfort and support, but the change they need to make, the change in mind and consciousness, is their own choice.

Day said, “I don’t know if it makes a lot of difference now that I’m -- I’m dying.” And then he

was very quiet and seemed lost in thought.

8 January RANDY

Randy has been slowly dying over the past four days. His body is shutting down, like the

servants turning off the lights in the abandoned mansion. One by one, room by room, the lights are turned off and the rooms closed. This mansion was built forty-seven years ago. What will be remembered of it?

It is the small things I need to remember to do for him-- like to comb his hair. I know that must

look ridiculous, a man is in the last stages of dying and I want to brush his hair. I want people to see

him as someone deserving of love and respect, and yes -- care. Maybe by having him clean, shaved, hair combed, and the blankets and sheets neatly covering him... someone may see a brother, a son or

person... instead of ‘The Patient’-- you do something for, you do something at or who “needs your attention.”

A revolution sometimes takes small steps. With these men, I take the time that I need, close

the door to his room, take off my jacket, open the window, allow the sunlight to come in and devote an hour or so of time to him. Though he is comatose, I believe we hear one another. I move slowly and deliberately. My process of caring for him is a meditation. The meditation that I did not do this morning is done with him.

The Buddhist monk Thich Nhat Hanh said that each act in the washing process is like washing

the baby Buddha or the baby Christ. The state of mindfulness is not a lights on or off, it is a movement towards our own Inner Light, a truer revelation of ourselves. In working with Randy, I am not

distracted by the ward outside or my fatigue. I breathe, I work, and I listen. What is it that this person

needs to say to me? I massage his reddened skin and his emaciated body. I am attentive that this body is a miracle and this life a very precious gift.

How do I honor this miracle of life? I care for another and care for myself. I allow myself to be

open and loving. I spend eight hours a day among the sick and dying; and there is an even greater

appreciation for that miracle of life and the simple pleasures of being alive-- free of pain and illness.

12 January

After the morning rounds I took a break in Willie Sanford’s room and talked with him. His life

began in South Carolina before World War II in a tiny town near Charleston, the kind of town you

always remember fondly, but are only too happy to leave. As a young man, there was the north, New

York City, and promises of work. “Sure there was work man, but you know how it is for someone who is ...”. He doesn’t say it, his voice hangs on the missing word, “Black”.

No Willy, I don’t know how it is. In that thick whisky and cigarette coated-drawl you can hear

his past, as clearly as the words, “Harlem in the Fifties was still something, but there came the kids and you get tired of keeping it all together. It never seemed like there was enough.”

He has three children between six and eleven from his second wife. They came up last week,

and the youngest girl was dressed like she was going to a birthday party. Willie was too exhausted to stay awake for more than a few minutes. But he was awake enough to sign over his social security

check, his wife saw to that. “That’s all she comes up here for, to make sure that I give her my check.”

Willie is slowly wasting away and suffocating, like someone who is wrapped in a plastic bag. No

matter how much oxygen he gets through the tubes, it isn’t enough.

An intern told him that his prospects for long-term survival weren’t good and asked him if

wanted to be a DNR, “Do not resuscitate.” The stamp and the paper that closes the book.

We spent about an hour talking about his options. “You know I’ve been thinking about this, you

know what the doctor said, what is that they called it? Oh, yeah, DNR. I’m scared. I’ve been thinking

about what is out there, you know at the end.” His face is partially hidden by the oxygen mask but his eyes are cloudy with tears. “I’ve heard so many different things of what could be there at the end.”

I said, “The DNR means if you do have problems then there won’t be any heroic measures.

What’s important is to make a peace with where you’ve been and what you’ve done in this life.”

He said to me, “You know I can always tell when you’re not around, the place feels a little

lonelier.” Was he trying to make me feel good? If so I am appreciative for a kind word. This work is so exhausting spiritually and emotionally, and you try to give your best, but it always sucks every bit of

energy out of you – unless you distance yourself and pull back. That is really the art in caring, learning to care for you and the patient.

14 January

Yesterday, Willie went to the Intensive Care Unit and a young intern, said half in jest, “The war

is on – we’re here to save lives and fight AIDS!” He had all the bright vigor and enthusiasm of a Hitler Youth Corp recruit.

My cynicism is always close at hand and my crap detector even closer.

ISOLATION:

On Paradise Alley, the isolation continues, it’s a key piece of the AIDS puzzle -- the isolation and

aloneness that are omnipresent.

Randy was in the hospital a week before Thanksgiving, made a major leap in progress and got

out of the hospital so that he could make the holiday dinner for his family -- his parents, sisters, and

brothers. He didn’t want to tell them he was dying of AIDS and they didn’t find out until a few days ago.

Another patient mentioned this was an AIDS ward. They also, I think, finally figured out why Randy never had a girlfriend. Uh oh!

Part of their conversation went something like this: “Does this mean he is...? No, it couldn’t be.

He was just a little shy around girls... Yes, that’s all it is. The doctor said he had “blood poisoning.” No, absolutely not.”

The family sits on the far side of the room. Mother, with her oversized purse sitting on her lap,

is rocking just a little, gazing out the window. The father and the brothers are watching the football

games and Randy is in bed dying before their eyes. Maybe that was enough contact -- I don’t know.

At the same time that I am working with the men and their families, I am also conscious that I

am working on my own isolation: I’m a white male nurse working in a hospital with mostly Black and

Hispanic nurses and patients. Though I was born and live in the city, in many ways, I am still a stranger

here. Isolation and aloneness are very real here; even when the families visit, there are large chunks of time in between when there is nothing but dead time: you’re waiting for some change or miracle.

16 January

More faces coming in, it feels more like a battlefield hospital than a medical ward. AIDS

inspires exotic diseases with a hundred different names ---kaposi sarcoma, MAI, and CMV. Some of the

patients are more knowledgeable about their illness than their physicians and they become like a

character in Fahrenheit 45l: as each character would remember a novel, each one of these patients has

the entire history of their illness written inside them. Tyler is one of the few who is both

knowledgeable and articulate about his illness. This morning, like the young Jesus at the Temple

talking to the Elders, he is explaining to the attending physicians, interns, and residents about CMV

(cytomegalovirus) retinitis and the latest protocol for treatment. I wish that the other patients could hear this and perhaps be motivated to learn more about their illness.

Most of the men have a superficial understanding of this disease. Beyond the basics of “How

long and when do I have to take my pills?” They aren’t particularly interested in the details. But I

understand from friends who work in more “up-scale” hospitals and clinics, there are a great number of people who are actively involved in their own care and well-being.

I’m thinking of Randy, forty-seven and dead. You know in your bones that Death is always

right around the corner. While you may be whistling a merry tune, you keep one eye focused on what

is ahead of you, and every so often you take a quick sly peek around to seek if Mr. Reaper is waiting for

you. He has an office on this ward. Paradise Alley with Mr. Reaper in residence, just as patient as could

be. In long wide swaths, sheaves fall in the field and then are gathered. I don’t fear him, and then again, I don’t spit into the wind.

I listened to a meeting of the staff discussing life and death, determining who will survive and

who will not. It is a vain arbitration. Paradise Alley, there is an eerie quietude about the place and a

sense of foreboding. Who knows where Mr. Reaper stands today? Has he moved his office down the hall? Or, is he making a house call today?

17 January

Julio is stretched out like a sacrificial turkey, with each limb tied down to the bed. He couldn’t

even reach the call light to ask for help or get a urinal so that he wouldn’t pee all over himself. He had a bad reaction to a medication, so instead of assigning a nurse to monitor him, they tied him down

throughout the night. When I came in the first thing I did was to talk to him, ask him what was going

on and why was he tied down, and then I released him. After cleaning him up and changing his bed, he asked me, “Are you from up there (his eyes pointing to the ceiling)?”

I thought he meant the Psychiatric Floor –”You mean 27th floor?”

He smiled as if I was playing a joke on him. “No, much higher than that.”

“Oh, like from really above? No.” I smile.

Cole came back to the ward after two weeks away. Without a doubt he’ll be dead in a year. The

eyes tell a complete story. In his it was written that he had been back squeezing shit again --mainlining

heroin. Cocky brash full of confidence and quickly falling through the floor, too many egos to realize that he is dying because of this shit. I truly know why they call it shit.

Yesterday, I spoke with someone about the fairy-tale quality of the ward with sixteen beds for

AIDS patients. A piece of fanciful wishing? The miserly sixteen beds is like trying to drain a river with a teacup. For each bed here there are as many as ten to twenty patients elsewhere in this hospital

waiting for an opening on this ward. How many people are walking the streets, sleeping in doorways or on the sidewalk with AIDS? How many people are there in this city who are counting down their hours, unvisited and uncared for -- alone in darkened rooms?

The AIDS crisis may be the shock which kills or resuscitates ‘this patient.’ The Patient most in

need of acute care is our health system. AIDS defies all expectations.

20 January

Survival for Health Care Workers:

It is Monday morning after a weekend off and I feel refreshed and relaxed. I was going to call

one of the patients who was having a particularly hard time of it. While that would have been a ‘Noble Kind’ thing to do... it is not how I can best survive.

For human services there must be a strong motivating instinct for self-preservation and if you

don’t have or develop it, you’re sunk. You place your patient or client after yourself and while that may seem selfish, it is the only way you can survive till the next day.

Some HCP survive by coasting, doing no more or no less of what they need to do, and

sometimes that may be all one can do. Though we are taught that there should be a professional

distance between patient and caregiver; it’s not distance that’s needed, but the awareness that this isn’t

a “friendship” characterized by mutuality where both people get their needs met. It is a healing

relationship. Your emotional needs cannot be met by the patient. Perhaps some part it can be, but by

and large it is you giving to him/her, with little or no real possibility of a return or mutual satisfaction.

The consequence of recognizing those parameters and the responsibility of that helps us to see that

your patients are not your friends. Frequently, I hear of a nurse or a doctor having an affair with one of

their patients. It is destructive for both of them. The key for me is self-preservation. How do I preserve and strengthen myself so that I am not getting burnt out? How do the patients get their needs met without infringing on my well-being?

One of the most vitally important things needed for a successful HCP is time away. A good

weekend away with nothing to remind you of the week. Ah, I feel good on a Monday morning and that is a priceless feeling. The real trick is whether I can feel this good on Friday.

21 January

It is Martin Luther King’s day, quiet and peaceful. Michael, a gay man, a nurse, a year younger

than I am, is slowly dying. It seems as if all his life is being sucked out of him by the chronic diarrhea,

the nausea and vomiting and the pustules that continue to ooze. His eyes glaze over, and his intelligent, bright, vivacious spirit is fading. I try not to think of him as the Michael that I might have been friends

with. He is the Michael with Kaposi’s sarcoma and half a dozen other infections swimming in his body.

There is little that I can do for him, other than to comfort him. Today we spoke for hours. That kind of

time though is rarely available. At the end of the day I was fried. I couldn’t stop thinking about the ward for the next eight hours, I needed to talk with someone and let go all my feelings and emotions.

Joey is thirty-one. When I look at him I could be seeing someone who is forty-five or twelve.

It’s weird. He is what the junkies call a sewer; he’ll ingest any kind of drug, anything to get him high.

Nine years of being an addict has left him looking like a death camp inmate: he is about five-foot eight

and one hundred pounds. His arms are slender and white, with long trail marks, where the veins had

become infected and inflamed. His body reveals his life: the unhealed scabs, the suture lines from four or five abdominal surgeries, and a body which is hanging onto life with as much certainty as the last

leaves of autumn. He is on 90 mg. of methadone that would make the strongest of men very quiet, but

he is as wired and fidgety as a crack baby. Like an exhausted infant, no matter how much you talk with him, he can’t calm down. He wants to leave, go back out on the streets one-minute -- and the next

minute he wants to stay. He hasn’t shaved for a week and needs a haircut badly. The pajamas hang on him like the clothes on a scarecrow. He reeks of pain and the torment of an orphaned child. There is

absolutely nothing I can do or say to change his condition. His anxiety is driving everyone up the walls.

Though he has active tuberculosis, he refuses to wear a mask. He plays the role of the frightened child who demands the attention that he never got.

I sit and talk with Joey for the better part of an hour. We are alone, the door is shut, and as the

story of his life comes, tears fill his eyes. I acknowledge that it is okay to cry. It is very okay to cry. I listen, and am there as best as I can be. It seems that is the most important thing I can do for him.

John D. is going home today. He seems as if he is focused on getting well. John is a crack-head

and mainliner. At thirty-nine he looks like he could easily pass for fifty. He had a good job with the

Parks Department, a wife, and a couple of kids. Then he took sick, went on leave, had more time on his

hands than he knew what to do with. He got a bit of cash and then - chaos time at the Saint George

Hotel: a crack house, shooting gallery, and “merchandise transaction center.” I’ve never been there, but

a couple of guys on the Alley live there. The voyeur in me wants to visit, but it would be as weird as if I were to visit the graves of those who have been here before.

John says, “Soon as they discharge me, I’m going over to the St. George to pick up my gear and

get the hell out of there. That ain’t a life for me.”

I wish him well, and a part of me wants to believe that I won’t read about him in the obits next

week. I give him money for a token, chump change, and hope that he’s serious. When I look into his

eyes, I know he doesn’t realize that he’s hit bottom-- no wife, no family, no job, no kids. Only an arm of track marks and a diagnosis of AIDS. Some people only learn when they finally land on a slab at the morgue.

I rage at the stupidity of a life wasted on addiction. Yet, the stubborn part of me stills holds out

a chance for him. Here on the Alley that last chance is as slender as a needle.

I talk to Lionel later that day and he knows John’s story. He says, “You believe that bull-shit

about him seeing his wife and getting it together? The only thing John is going to get together is his arm and a fix.”

I’m wary of Lionel, this forty-eight year old street-smart hustler. He is good at getting his audience to

believe him. Am I hearing what he is truly saying or is he saying to me what he thinks I want to hear?

Are his concerns and fears genuine or are they part of some elaborate con game?

He says thanks for all that I’ve done for him. I do what I can, I don’t think I’ve done a lot. He has

been taking some kind of extra medication while he is here. I can’t be sure, but he does look coked-out

a lot. It may only be my paranoia. Anyway I like him. He tells me straight that he can’t promise me that

he won’t do drugs again. “I like drugs and alcohol, so I can’t say if I will stop.”

I tell him, “Shit, Lionel I like drugs too, but I don’t do them.”

We laugh.

Three-quarters of the men on the Alley are drug abusers; yet, there is no Narcotics Anonymous

program or any kind of in-house support or treatment. There is a whistling-in-the dark kind of attitude

that their addiction will somehow disappear with the AIDS treatment. As a friend reminded me, “What do you have when you take drugs away from an addict? An addict without drugs.” The point seems

apparent, however, not to the people who need to be the most aware of it. More of the “Bury my head in the sand, it will all go away attitude.”

Two or three guys pass in front of me this morning after they’ve come back from the second

floor. I look into their faces. One has definitely been smoking crack, the other two just look very stoned.

There are guys here who are making the effort to get well and get their lives together, to use

the time that they have left as best they can. Most of the staff doesn’t listen to these guys, except for a few, like this young Asian doctor, Paul, who takes the time. For the most part the guys are just “the patients” and the medical staff and so forth are the ones who know.

It takes courage to sit down with these guys and hear their stories. It takes a willingness to risk

and maybe at the same time to see your own life, maybe to even reveal some part of who you are. Joey lost an infant son last year, and Chester’s son died in his arms three years ago. Over and over you take

the patients’ blood pressure or insert an IV, and you see the scars on their arms, suicide slashes on

their wrists or stab wounds on their chest and face. This is a map of a life. For whatever reason, they

have wound up on the front lines of life -- taking it on the chin, taking it to heart, perhaps too sensitive

or stupid to walk away. But beneath the tough guy bravado or the ‘nothing going to get me’ attitude is a lot of scared and lonely guys.

When we can speak man to man - person to person - when I can listen and look at them, eye to

eye, and unflinchingly listen to their pain; then I can also allow myself to hear their hopes and dreams.

At that point there lies that tiny chance to make a connection, a bridge, between them and me.

The goal for me is to lay aside my pain and troubles and face them as directly and intimately as

I can. The dying demands the opportunity for healing and a time to get ready for the voyage home. A

Quaker once said, “A return to her cosmic address.” For me, cosmic is two people talking and meeting

without fear. Very cosmic.

21 January

come.

This feeling in my bones says that this epidemic is only in its early stages and the worst is yet to The plague is like hearing an intruder enter your house in the middle of the night. You are

alone. Will you confront him? Will you call for help? We are frightened that our secure neighborhoods

and well-locked homes have been violated. What will he look like when confronted? AIDS - the armed

thief breaking into your house in the middle of the night.

I want these stories to be the window which will allow people to understand what it is like to

live and work with AIDS. I want people on the Alley to see these people not just as “the gay, African

American, junkie, or whatever.” I want people to see the patients as real human beings who are still struggling to hold on to their dignity in the face of a disease which denies it at each step of the way.

Raphael Jones is a Puerto Rican who doesn’t speak Spanish, though I wish he would because I

can’t always follow his English. Jones said, “I started shooting heroin in the summer of ‘68 in New York.

Later that year my draft number came up. The Army didn’t seem like it really cared what I had done, all they wanted was soldiers. In the back of my mind I thought I’d clean up and get away from all the

street business, but there wasn’t a chance of it. In Nam -- all that top-grade smack was too good to pass up, it was like giving a kid a key to a candy store. It was thirteen months of being high and never once

coming down. Nam it’s weird thinking about it. It’s like I jumped off a wall and was never able to climb

back up. I was always looking for a place where I could start again, to come back to the beginning, but I couldn’t.”

Once back on the streets, it was addiction, prison, sobriety, addiction, and finally here -- this

AIDS ward.

Jones is like a little kid sometimes and I enjoy his enthusiasm. Despite a liver that’s shot, and

his up and down temperature spikes, he still sees the humor in this place and makes me laugh. One afternoon we turn on a Luther Vandross tape and toss around a volleyball around with some other

guys. Picture this scene -- a gay black man, a NY born Puerto Rican ex-junkie, a black ex-con, and me, this long haired white guy, chucking around a volleyball and listening to music on a cold winter afternoon. It would have been a priceless picture.

Jones is always looking out for his room-mate who is too sick to get out of bed. Sometimes he

can be a pain in the ass. “Did you get the lip medication for him? Did you do his exercise? Did you get

some cigarettes for him? Did you do this or did you do that for him?”

“Jones, give me a rest. What are you his Mother?”

I start calling him Mother Jones, he appreciates the fact that she was an anarchist, and is

amused by his new identity.

As the weeks go by he gets stronger. One morning like a rooster at dawn, he yells out from the

end of the hallway, “I am the King of this joint!” I laugh as he takes a mop and begins to swab the floor.

I love watching him. There is a fight there that won’t quit, that not even more than twenty years of IV drug abuse can quell. I need more men like him with guts and spunk.

Jack, a few beds over from Jones, said to me the day before yesterday, “Is this Chattanooga?”

“Why ?”

“Hell, ain’t this the last stop on the Chattanooga Choo?” I know what he says is true, about

being the last stop. Some guys have been blowing full stacks of steam for so long, fueled by madness,

life, or mainlining cocaine. Here at the end of the track, the brakes got a sick squealing sound as metal grinds across the greased tracks. Last stop. They know it, but most times don’t say it.

“Life it kick you upside your head if you don’t watch it.” as Henry likes to say.

It’s 6:55 got to go. I feel good about going to the Alley today.

22 January

Sandy, the Director of the unit, has dominated my attention this morning. Four patients are

being transferred and there is only me and another nurse on the floor. She comes on the scene and I

say, “Sandy, we need a little help here.”

She asks, “Are you ordering me to help you?”

In the midst of a dozen things flying around, I need to deal with her sense of inadequacy. Is she

like Major Major who got the promotion because someone stepped on his punch card with golf-shoes?

“No, Sandy, but we are very short-staffed (You made the schedule short again, you moron! I felt

like screaming to her.) and your help would be appreciated.”

“I can’t help you and besides it’s not appropriate for you to ask me, you need to have the

Charge Nurse on the unit ask me.”

“Sandy, she is passing IVs, admitting two patients, running the floor, and I am passing out oral

medications and accepting patients as well.”

It is pointless. The spoils are not to the best or the brightest: they leave. What is left are those

who stay. Kind of like barnacles on the bottom of a ship. Sometimes it takes dynamite to get old barnacles off. Gladly, I will light the fuse.

There was one really good moment today, I was walking Tyrone. No, that’s not quite right. I

virtually dragged Tyrone out of bed in the morning, and in the afternoon this SOB who gave me so

much garbage about not being able to walk, walked just fine. I refuse to give into his laziness. I ask him, “Tyrone, what is one good thing about walking?”

“I can sit down again.”

Well, I hadn’t thought about that, but I’ll take it. This faker walked fifty feet with his walker,

screaming and cursing every inch of the way. Well, the weirdest thing is when we get back and I asked him, “Well how was it?”

He had this real thoughtful look on his face for a moment and said. “I think I lost the will, my get

up and go, my fight power.”

A break in the clouds?

“I know you’re not being cruel and I think it’s a good idea that we walk. What time are you

going to be on tomorrow? Eight a.m.? Good, then I’ll walk at nine a.m. and later in the afternoon.”

If I had dentures they would have fallen out of my mouth. I feel as if I made progress today: One

inch further with Tyrone. I never accept the excuse that someone can’t do for himself. As I told Tyrone,

“You only got one excuse for not walking and that’s when you’re laid out.”

Worked again with Michael, a little interaction, not much. I notice my ego at play. I expect us to

have a ‘relationship’. I expect him to open up to me and see me as this wonderful marvelous nurse. I’m

not, I’m just a long-haired guy wearing a Popeye T-shirt. As much as I want to be something else to

him, I can’t: I’m part of the hospital thing, part of the problem, part of the thing which prevents him

from enjoying his life. I take care of him, and he doesn’t say thank you, except for once at the end of the

day. He can’t think of anything except that every fifteen minutes he has diarrhea, and even the smell of food makes him nauseous. It’s hard to be any kind of civilized human being in this circumstance. I

expect him to be grateful for the kindness I offer; instead, I’m grateful that I can at least see how my ego is in the way.

In the afternoon, I give ice and cold water to the patients. It is the simple things which count

the most. Many times I find myself getting into all this psycho-social voodoo about healing, but it’s --

very simple: kindness without ego. Fluid. Like the water. Kindness, what a strange and needed word

in medicine.

Joey is high, frightened, babbling incoherently most of the day. More like a ghost than a man.

23 January

The ward too often looks like a prison with the patients dressed in brown or maroon colored

pajamas. Their clothes are locked up downstairs and they are left with only a few personal

possessions. When some of the guys are discharged and come back for their clinic visits, I’m startled to see them in street clothes. As if they put on clothes, moved out of the realm of being a patient, and magically became ‘real’ people once again.

Sometimes the patient turnover is so rapid I can’t get a focus on who they are. Maybe this is

the way alienation begins? Once he was a person, but when they come on to the Alley, the culture of

Doctors - Nurses- Social Workers transforms him into “the patient.” In that metamorphosis, the staff

lose their perspective, and often fail to see this patient as a person. The Elephant Man’s cry was, “I am

not an animal, I am human!” That is the cry which needs to be shouted above the din of beeping

machines, respirators, telephones, and the stiletto like click of gurneys as they take the men from one test to the next.

Mona, a Social Worker, who had worked with Tyrone, said. “He doesn’t get up and there is no

reason for him to. His wife is an alcoholic and he’s a boozer. Let him stay in bed.”

“But I had Tyrone up and walking with his walker yesterday and I know he can walk.”

“Listen, there’s nothing you can do to change him, let him be there with his television and he’ll

be happy enough.”

“No, I can’t let him veg out.”

The real reason for keeping him in bed is because it means less work for the staff. If any of

these guys have an ounce of rehabilitation potential then I want their feet on the deck and moving.

Some days I come in here and I’m only too glad to have them lie in bed and not bother me. The trick is to fight against my natural laziness, theirs, and the institutional lethargy that says its okay for the guys to veg out. It’s not okay. Even the guys who are bed-ridden can still do physical therapy, or some interactive activities, something besides just lying there staring at the TV.

I worked with Lillia today, the black Latin American nurse. She says little and goes about her

work quietly. There is a timeless quality in watching her. She is neither pretty nor young, and her face is filled with stories and memories. A dutifulness pervades her being. She is the kind of person who

has kept the wheels of life and history rolling... wars will happen, the men will return, she will care for

them, keep the fires going, raise children, and maybe every so often gaze at the setting sun and wonder of the land it sets on.

CHESTER:

Next door to Michael’s room is Chester, a forty-eight year old man who’s been an addict for the

past twenty-eight years. This morning I call out to him, “How the hell you doing and when you going to get your raggedy ass out of bed?”

He laughs and it sounds great. He is getting better, but not cured. He looks like a Masai warrior

-- tall, lean, and gaunt who has seen the summers of drought and famine on the land. Chester’s past is a barren landscape, with scattered and rare moments of sanctuary. He tells me parts of his life story

which is filled with exhausted dreams. His son who died at the age of three, the year before last. The children, from his first marriage, who he lost touch with years ago. “I always tried to get away from

Harlem. I’d leave for a little while to go back down South. Once I tried to find my family in Georgia, but

they didn’t know who I was. I still felt as if I almost belong there in Macon, but I couldn’t stay. This time

it’s going to be different. I’m going to leave the city and find a place in the South. Someplace where I can be warm in the winter and watch the boats come in.”

Soon he’ll leave for home, near l25th Street. I don’t want to believe that his dreams may only

be a vague wish, and that he very well may return to his private dream machines, heroin and cheap

wine. Sometimes it is easier to find that than hope. He may not fully believe in his dreams, but I refuse

to surrender faith in him. Chester with end-stage AIDS, TB, and a few other opportunistic infections swimming through his body, may have the chance for one last good dream to come true, maybe he won’t. I said to him today, “I like that dream you have about going South to find someplace warm,

where the cooking is good, and the women are fine. That’s a very sweet dream. Go for it, Chester.”

He looked at me strangely. Was it because somewhere in the middle of our casual rappin’ he

heard me say, “I believe in you.”?

Yes, I do.

24 January

Jan, a nordic looking guy, in the middle of the day has a violent reaction to something:

projectile vomiting, total body sweats, and gagging. He looked as if he had been sucked through the intake on a jet engine. Jan had been off the ward for about an hour, and now I find out he’s a crack

head. It makes sense, Jan has just ingested some pretty strange chemical, maybe crack. It’s odd how

many other patients, when they start feeling better, find their way downstairs for a little recreational break, to negotiate a little pleasure or pain.

Joey is becoming a caricature of a junkie, a hunched over scarecrow like figure. He looks like a

walking drug warning commercial – “Look! What drug abuse can do to you!” We could make him, “The Drug Addiction Poster Child for the Month.” Mumbling and groggy in a stupor of sedatives, with his

yellow hospital mask (which is intended to protect others from TB) dangling off his ears, and his wrap-

a-round Ray Ban sunglasses he stalks the halls. Swaying from one side to the other, he sings in a weird out of key way, the way people sing when they have their Walk-Man on. The image he projects is that

of an orphaned child who says take care of me, hold me, love me; yet, this is the person society is so

deathly afraid of – “The Junkie”. But, I have no illusion, if Joey needed a fix and I was in the way, he’d just as soon make me a part of the pavement as talk to me.

Yesterday, I was passing out medications all day: the PZA’s and AZTS, and the arsenal of

chemicals and potions to fight AIDS and opportunistic infections. But our method of distributing pills is overly scientific. A much more interesting way to give pills is to pour all of them into a bag, mix them

up, and then have everybody take a handful. A new twist on natural selection. I’m not sure what works better, the prescribed, or the random.

My sense of the anarchist prevails.

The emotional sterility of the ward is omnipresent. On one hand there is the vague optimism

spawned by the pills, shots, and tests; which is contrasted by an ever present indifference to the human needs of the patient. We deal with the physical and mechanical, but rarely speak to the emotions of the illness. In effect, we treat only half the illness. We spin a fanciful myth which says that these pills and

potions will be the panacea, however, what is genuinely needed is the real commitment to the deeper spiritual and emotional healing.

Why are some people HIV positive for ten years or more and never get sick? Why does

someone get their first opportunistic infection and die? Why do two men have similar conditions, but only one gets well?

John D. came back. His eyes were clear and he looked clean. I was surprised and delighted. I

love to be contradicted of my cock sureness, that I know what they will do once they hit the streets. I don’t know, I can only guess. He also pays me back for the subway token: Small affirmations of my

faith, as refreshing as rain falling on an oasis. Yes, keep green these oasied feelings which are too often given to doubt.

My cynicism and doubts often come back to haunt me. Catholics have a saint for hopeless and

impossible causes, and it was the prayer card Billy Martin had on him the night he died. It should be

the patron saint of human services. We feed on this cycle of despair and rarely see satisfaction, moving from one trough of pain and misery to the next, often without any change or respite.

Britt has secondary syphilis, herpes, brain lesions, and a recurring case of tuberculosis. He

often sits alone in his room, an island within an island, shuttered inside a world of deep and private

pain. Though I’ve spoken to him consistently for a month, I scarcely know him. We were talking about

friends one day and he said, “I know many people, but few that I would call friends. I select the few

friends I have - - very carefully, very carefully.” There are one or two men who visit him from church, and one day several of his co-workers came up to see him, but I haven’t seen friends visiting. He

mentions none nor is there a mention of a lover. Where are the lovers he had? Those who kissed and desired him, where are they now?

Padre rolls on to the ward by ten o’clock, tanked and fragranced with mouthwash, filled with

homilies and good cheer. He reminds me of the folk song ‘Green Grass of Home,’ with the black-

frocked minister taking the condemned to their last few yards. He knows the guys by name, says hello, gives communion to the Catholics, and the others his, “hi-hello-god-bless you and keep your chin up” patter.

A week later, I see the Padre, being helped by a younger priest, leaving the hospital. He looks

like he’s been sparring a few rounds with Mike Tyson, arm in a bandage, head all bruised, and looking

disoriented. When I asked him what happened, he said, “I slipped on a wet floor.” Was it a wet floor or too many wet glasses?

As people crowd into the elevator this morning I smell the eight o’clock cocktail, the mix of

mouthwash and liquor. One nurse on the ward had a few drinks before she came in, she wasn’t glazed, just a drink to take off the edge before the day begins. Sometimes I could use a little something to take off the edge before the day began.

Twenty years ago, when I was a corpsman in the Navy, after eight a.m. roll call, the older guys

would go in the back and put back a few shots of Jack Daniels, and the younger guys would smoke a joint or two. Shortly afterwards, we would hold sick-call.

I work from morning to evening almost without pause. The quiet and unhurried attention to

task makes the time fly quick.

28 January

It’s been three days, three glorious incredible wonderful days since I’ve been on the alley. This

past weekend at a Co-Counseling workshop I got a chance to work on the emotional issues about working with AIDS. I cried over the skinny frail addicts and their almost impossible fight to find

meaning at the end of their lives. I cried over the beautiful dynamic human beings who have been

sucked dry of dreams and life.

I couldn’t imagine staying in this work without some kind of consistent therapy or counseling.

It is the cornerstone of survival in this work. Most times we don’t realize the emotional toll this work

takes on us until we’re already fried and exhausted. There is no formal mechanism for staff support on the ward. When they did have a therapy group, Sandy said, “It isn’t important and we don’t need it.”

Though the staff had asked for some kind of counseling service, she said, “If you need counseling to

work here, you shouldn’t be here.”

The wooly fat cat, T2, is in front of the window, stalking some unseen, or imagined, creature

through the snow and winter weeds. He looks around intensely, defining his territory, and sniffing the air. A lion claiming his territory.

These security bars on my apartment window are like a prison: I could not get out if I wanted

to. Is that the depth of isolation some of these patients feel? Like the garden in front of my window

separated by these bars, there is this garden called a life without AIDS slightly beyond their grasp, a world which is free of pain and suffering, a world they can see, but not touch.

SUSAN RODGERS:

I’ve been thinking about a poem I wrote some years ago, the idea behind it was that every soul

had a song or something to say while it was here. It may sound a little farfetched, but in working with the dying on and off for the past twenty years, each person who dies leaves something, some truth or insight.

Fifteen years ago at another hospital, Susan Rodgers, an old black woman about eight-five

years old or so, was on her death bed and I was assigned to her. That morning I spent more than an

hour with her: bathing her, combing her hair, changing the linen on her bed, and massaging her tiny

almost bird like body. A body which wore eighty-five years of pain and celebration. I could feel each moment of her life beneath my finger tips. In the small intimacy between us, she spoke her song.

Though she was comatose, her song was bright and so very colorful. It was the voice and song of a

person who had lived a good long life. I heard the memory of a child who laughed and played in green summer fields, who spent lush hot summer nights lying against trees gazing at the heavens and

wondering from which star her lover would appear. The song of her life was so very clear. When I

opened the window of her room, I heard the rush of the wind around me on that still morning. It was a soul taken to flight. I was not imagining. One cannot imagine a thing so beautiful and free.

On Paradise Alley how often am I deaf to the song of each person? How am I attentive to their

struggle, faith and hope? The quest is to discover that song in each of us and give voice to it.

The Alley gradually becomes part of my consciousness and a metaphor for my personal

journey. It mirrors my growth, failings, and dreams.

At this point I am only working three days a week. In many ways this is ideal, it affords lots of

time for rest and healing, which is sorely needed because of the enormous amount of in-fighting and

conflict among the nurses: the petty arguments, the jockeying for positions of status, and the on-going

conflicts between people. This AIDS work is immensely draining, without adding all these unaddressed conflicts.

Nina, a stout fifty-five year old Puerto Rican nurse, works with the guys like she’s running a

plantation. She told one guy she was going to report him for being “non-compliant” because he didn’t follow her orders. This morning, she insisted on giving a shower to a man who could walk and was

capable of giving himself one. Though I told her this, she still insisted on giving him and everyone of

her patients a shower; however, almost all of them could bathe themselves. Is it that she can’t deal with them as fully functioning men and needs to deal with them as children? Hell, who knows, maybe she’s

kinky?

29 January WHILE OUT AT THE PONDEROSA

A bright eyed and very eager intern is drawing an ABG (an arterial blood gas, which is done by

sticking this inch and a half needle into someone’s artery - ouch!). Diego is a thirty-nine year old junkie

who suddenly decided to leave this life. He gets up from bed, nauseated and then codes out, right in

front of the startled eyes of the intern. The call for a code in a lightening quick flash spins through the hospital. Like ants to an errant piece of chocolate cake; nurses, doctors, technicians, and enough

medical help to staff a small town hospital, swarm to the bed side. It’s more than absurd. Diego is

already about three to six months away from dying. Without a doubt he was on his way out. I hear

each order for vials and potions, chemicals to brew the blood and vital fluids back to a prescribed state of well being. But what potion can speak to the soul? This swarm of (apparently) well-intentioned

bright eyed and enthusiastic interns are banging on his emaciated chest. Boom! Boom! Injections and electric cardiac paddles, EKGSs, more blood work, and so on till a flutter line trace shows on the monitor. A spark of life shows up on the monitor: But to what end? How appallingly absurd!

Someone forgot to tell the intern about “slow codes.” Even without the DNR (Do Not

Resuscitate) papers, those who are a few feet away from the edge are allowed that small grace and

dignity of dying, without this humiliation. Young Dr. Kildare, intern extraordinaire, has seen too many TV medical programs. I feel like smacking him up-side the head for this barbarity.

Sometimes interns can be trainable. Some just have that grating hubris of “Omniscience and

Omnipotence.” It is a disease which afflicts more than one out of every five doctors. This could lead to a television commercial being given by Parnell Roberts, Adam Cartwright in middle-years, in that sure pharmaceutical salesman voice of his. “Yes, Doctors who suffer from that chronic syndrome of

“Omniscience and Omnipotence,” take Humilido - a painless two tablet dose of humility in the morning and at night will cure that sure obnoxious feeling of omnipotence and omniscience. After all, five out of

every five patients recommend it for their doctors who suffer from it. Humilido, the name most trusted by patients, ask for it by name.”

Its contagious and virulent, interns get and doctors get it, and institutions foster it.

Diego is now on the respirator with air-way tubes stuffed into his mouth. IV lines and EKG

wires are dangling from him like Gulliver trapped in Lilliput. There are fresh track marks and bruises up and down his arm from the five vials of blood they’ve taken from him.

Dr.Frankenstein would have been gleeful at this futile effort to bring Diego back from the land

of the dead. Diego’s dark circled eyes stare at the ceiling with barely a flicker of awareness, as he is wheeled past me on a stretcher to the Intensive Care Unit.

He died within two weeks without regaining consciousness. This time they had the forms not

to resuscitate him. It was clear, just hold his hand and watch him go.

Instead of this crew of nurses and doctors to stay the course, I believe they should have cheer-

leaders to help in the transition to the other side, people dressed in bright and happy colors. A little bit like in the movie “All that Jazz,” where people came to cheer Fosse on to the other side. In this case, all

the people Diego loved and cared for would be on the sidelines chanting and cheering, “Go Diego go! Go

Diego go! Go Diego go!”

There is no cheering on the Alley. No balloons or parades, and very little which is heroic. There

is only the ordinary miracle of life and death. The only thing which is precious and special is time,

because there is so little. The Alley though finite and defined, holds infinite promise in the ordinary daily miracle of life and death.

There is a classic Zen tale of a man being chased by a tiger, and when he came to the edge of the

cliff he leaped. On his way down he managed to grab a vine. He was relieved! Until he looked down and saw a bear hungrily licking his chops at the foot of the cliff, and in the next moment he heard a

mouse nibbling on the vine above him. At that moment he saw a strawberry growing next to him, he plucked it and savored it. How very delicious!

It says so clearly how precious one moment free of pain is here on Paradise Alley. One moment

away from the pain -- how very delicious.

Which one is AIDS: The tiger chasing the man? The mouse nibbling on the vine? The free

falling flight before finding a vine to hold on to? The bear waiting below or the taste of the strawberry?

30 January

The windows on the Alley cannot be opened more than six inches (perhaps so people don’t try

to jump out), nor can the blinds be raised; they are sandwiched between glass and allow light or

darkness, but not a clear view. The early morning sunlight crawls through the windows and reveals

the stark landscape of the Bronx and Queen and to the south Brooklyn: Factories, refineries,

abandoned apartment houses, and an air of decay that not even the sunlight can erase. Across the river, I was born. They say it was safe and clean then; now it is a wasteland, a very tired wasteland. We mirror that loss on Paradise Alley, where dreams are made and destroyed, promises spoken and

others lost or misplaced. The East River moves very sullenly without emotions, it is a faceless name with only a direction. It is like many of the men who come here, too often they seem faceless and

nameless, here and then gone. For a moment we interact and then they’re gone. What memory does

the river have? What would the river say if it had a voice? And for the men, the last look at the world is through the slatted bars of these windows.

White and grey sea birds sail by the water’s edge, swooping low to feed, then rising up in a

constant swirl. A legend says it is the birds which carry the soul to the heaven. As they swoop and swirl, are they waiting for another soul from the Alley?

I open the window and a sliver of cold air slithers in, it tastes only slightly fresh, at eight-thirty

a.m. it is already marred by the soot and smoke of the first shift.

I once wrote a story about Walt Whitman and Thoreau walking by the Brooklyn shore talking

of America and the promise of what it held. The promise of America in the l840’s was already ravaged

by the first thrust of the Industrial Age. This Plague is connected to the lost dream of Paradise, the Industrial Age promised it would in time lead to a New Eden and yes, a new Man. The vision of Whitman was that we would find a common bond and break free of our isolation.

Whitman, a poet and nurse, cared for the sick and dying in the War Between the States, and

mourned the death of these men crushed by machines and bullets. Though sad to the core of my being by this new war, AIDS, I do not have the luxury to grieve. If I had an emotion to give, it would be of

celebration. I celebrate the human spirit in all its magnificence and pain in this fight. I hear the voice of

Whitman singing in my ear, “I celebrate the body electric.” I celebrate the spirit electric. The spirit which refuses to surrender and keeps on fighting no matter how absurd the odds.

In watching the river below, I sometimes think we are an island set apart from the world, that

our concerns on the Alley are separate and our own. But they aren’t. AIDS is directly connected to the malaise of society.

In this Age of Isolation and Science, and chemicals which penetrates to the core of molecules, it

is too easy to forget the pulse of the human heart. We believe science will put an end to this Plague. But what of spirit? What of love? How do they fit into this equation?

31 January

Yesterday on the Alley, I was zonked out from eating a xanax for sleep. At first, I took a half

tablet and then when that failed to work, went for the whole thing. For a day I was a space-case, utterly

lost. I kept trying to focus on what was unique about the alley. What am I not seeing? What do I need to see? I look down the hallway for the longest of time, it is empty in the late afternoon, most of the

men are asleep, and I am also nodding off as well. What do I keep missing? What do I refuse to see?

Solzhenitsyn’s, Cancer Ward, and the Gulag system comes to mind. In each setting of isolation

there is a bond. In the slavery we occupy, in whatever shape -- State sponsored or spun from the terror

of our intimate fears, we are connected to every women, man, and child who has been enslaved.

I am looking out of the prison bar windows in my apartment, miles away from Paradise Alley,

and I still feel the same profound sense of despair and loneliness I felt there today. This voyage of a life speaks too much of loneliness and pain.

I was angry at myself when I realized it was the xanax which had incapacitated me. I couldn’t

deal with Joey and his drugged out perambulations and mumblings. I wanted to stand him up straight

and say – “Be a man and suffer well! Don’t whimper in your soup and by no means - cry in your beer.”

I hate watered down beer.

Struggling for a bit of lightness. Many times, I fail to see the humor or lightness in a situation. I

see my own desperate Dorothy of Oz attitude saying, if we can get back to Oz then everything will be okay. If I click my sneakers together three times, all of this suffering will vanish. Right ! Thom in Oz.

A clown in a bear suit came in with balloons to cheer Michael up. I had to have the clown wait.

Michael had been vomiting and having diarrhea all morning, and this bear wants to come in and cheer

him up. One part of me was angry, because it seemed futile to make someone laugh when they were so

sick, and the other part of me was very glad there was some comic relief. My sense of humor has gotten rather strained as of late. Thin, like bone soup.

But there is a lot of very funny things that go on here. One day when we were playing ball in

the day-room, Sandy showed up. Though we had been doing it for several weeks, she decided that it

needed the permission of the Chief of Physical Therapy, the Chief of Recreational Therapy, the Nursing Department, and that she would get back to me whether or not it was okay. I looked at her as if she was kidding me. No, she was serious. When I explained what we were doing, she said, “No, you’re

clearly stepping in to the role of the Recreation Department.”

Several days later she came up to me, with a hang-dog face and said, “I talked to the head of the

Recreation Department and he said it wouldn’t be right for you to play ball with the patients, because that’s their role.”

“Then they’re going to initiate a little more activities for the guys? Maybe some games or

things like that?”

“It’s their responsibility.”

“Oh.”

IF AIDS HAD EYES AND A SOUL WHAT WOULD I SEE?

Last night I had a dream, I was in the Air Force and I had the day off, then they canceled all

leave and the base was closed. I couldn’t leave. I was thinking and scheming for a way to get out of there. I was trapped. I knew what the dream meant immediately.

In talking with the guys, there is that sense of being trapped by the illness, no matter what you

do or where you go, you still have it. It has you. It is a ticking bomb ready to explode at any time and there is nothing you can do about it. The one thing you can do as Michael said, “You get faith.”

Michael suddenly looks better, maybe the alchemy of pills and potions has restored him. He

looks alert, but not healthy. He has sailed onto an island, a very tiny island, secure only at low tide, where the fair winds blow from the south offer a moment of sweet reprieve. One cannot begin to

imagine how incredibly good it feels to be free of pain, after suffering for so long. For Michael, it is a

daily struggle with pain and chronic diarrhea. He still can’t tolerate the smell of food, and needs to be fed with an IV solution.

It is such a weird illness. It seems like your body is at war with you. The battle between spirit

and flesh. I worked with the idea this week that AIDS is a disease of the spirit. I know it is only a

fragment of the puzzle; yet, like others I’m struggling to understand what it is and what it means to me.

If AIDS had eyes and I could peer into its soul, would I only see the disguises it wears -- hopelessness, fear, and isolation? Or, would I see more?

I both hate and love the anarchy which this disease induces. It is a crazy out of control glass

smashing, room trashing, hurricane force of adolescent energy which threatens to devour and destroy everything in sight.

What is the answer to this plague? My Quaker witness says, ‘love,’ my Zen roots says,

‘compassion,’ and my Jewish culture says, ‘an eye for an eye.’ Maybe a piece of each?

What does this plague teach us about being human?

I thought Michael, the nurse, was going to die last week, he was about a foot from Death’s door

and he came back. It was not the doctors or nurses who brought him back from that thin edge, at best

we are the cheerleaders on the sidelines or the coach calling the plays, when it comes to living or dying,

each one of us is, essentially, alone. It is our choice to go for it with as much pride and dignity as we can muster. Most don’t make it. Most cannot. But damn, I couldn’t believe his fight. I was proud of him for the guts it took to come back. It would have been so easy for him to surrender, to let it all go, but he didn’t, he hung in there and fought.

Dylan Thomas’s poem often comes back to me, “Do not go gentle into that good night, fight and

rage and curse the dying light.” In my mind’s eye I see acres of graves, like the Russian cemeteries, tombstones with pictures of the thousands of men, women, and children who have died of AIDS. l February

Joey, is shuffling down the hall on 90mg of methadone (enough to give even a horse a serious

buzz), ativan 2mg around the clock, codeine, and as I get closer, alcohol. Ah! I cannot take being with

him today. In his shuffling stupor he comes floating down the hall. He embodies all the things I despise

in working with junkies. Today, I hate him. I hate all the feelings he brings up for me. His chronic drug addiction is a slap in the face, no matter how much love or care anyone else may lavish on him -- it is

devoured. He is like Kali the devouring god who sucks it all in and offers nothing in return. I hate his

bottomless pit of desires, as much as he is cared for, he only demands more and more. He is offered a chance to get well and all this moron wants to do is to stay as high and stoned as he can. I don’t get it.

Not at all.

He is thirty-one and a few months away from the grave. My ability to love unconditionally is

mocked, as it should. I laugh at my notes and see myself as Jack in the “Ruling Class”: one part the God of Love and the other Jack the Ripper. He was right, ‘hang them all’. I am reaching a new level of

despair.

I realize my unsteadiness today is due to taking a xanax last night. Normally, for insomnia, I

take an herbal extract, but last night I couldn’t find it. Trying to shake off the fatigue I downed four or

five cups of coffee; subsequently, I was a nervous wreck, couldn’t focus, couldn’t organize work, even now, hours later, I’m having a difficult time writing. If one little xanax can do this to me, imagine a

nursing home or, even worse, a psychiatric facility filled with people on xanax, thorazine, haldol, and all those other wonderful nurse’s helpers.

Joey has highly contagious TB and refuses to wear a mask or to stay in his room, cheeks his

medication and spits out the pills that don’t get him high. When Dr. Gold was told that he was noncompliant her first response was “Let’s sedate him.” Though he was already groggy from the

medications, she said, “It doesn’t matter, what’s important is for him to be compliant and cooperative with our treatment program.”

Too often in a hospital we seek to manage people and their feelings. We aim for a norm where

everyone is happy and calm, but no one really is. We numb the anger but do not end it. We stuff down our emotions, which become like soggy bread crumbs which fill us up from mouth to anus. All these dead, sodden emotions are sewn up inside this coffin-like carcass.

Yes, our emotions, like a lot of soggy spiced breadcrumbs stuff up the bung of a carcass.

Happy Thanksgiving.

The City Public Health officials came in to assess Joey and another guy, but they said they

couldn’t do anything about their non-compliancy. Even if the patient left the ward and/or refused to

take their medication, short of a Court Order for confinement, which is next to impossible to get, the city can do nothing to prevent these people from going out on the streets.

The Center for Disease control said that 45 % of addicts with AIDS in the city have tuberculosis.

In the jails, TB is spreading like wild-fire, in response the city placed the prisoners with pan-resistant

TB (TB which can’t be treated with the traditional medications, like INH and Rifampin etc., and have to be treated with a variety of antibiotics which don’t always work) in special cells. The prisoners are

isolated in glass and steel cells with special filtration systems that continually circulate the air. In effect, the prisoners are in a sandwich bag with one of them zip-lock tops. They are kept there until their TB

is responsive to treatment or they’re dead. Is this the start of draconian system to deal with both AIDS

and TB? How long will it be before someone like Joey is placed in a cell like this for non-compliancy

with treatment?

The reason the city instituted these cells was because a guard came down with TB several

months ago and others became positive. Ironically, when several nurses who work in an adjacent city hospital came down with pan-resistant TB, probably caught from their patients, the city did nothing

more than investigate the situation and instituted a few new safety rules. If nurses had a union as

strong as the city’s jailers, would there have been a substantial response instead of this whitewash?

WILSON

At first glance, Wilson gives the appearance of a strong healthy black man with a strong

dancer’s body; yet, his legs are swollen three times their normal size and the skin is mottled and

peeling. That is part of the mockery of the disease. These powerful dancer’s legs are now only able to move in very slow and deliberate steps. I love the proudness about him. He makes no apologies for being gay, doesn’t flaunt it, but he is wholly himself, and strong in many ways. I come in during the

morning to say hello and this six foot-one, one hundred seventy-five pound man is propped up in bed,

holding a black and white teddy bear close to his chest. How can I not admire a man who is so open in his tenderness?

He is one of the first patients I met here, the first one to let me into his world. Today he let me

read his journal. It was drawings of faces and of mountain scenes, who visited, the nurses and the way they interacted with him, the frustration of being here week after week with no clue as to when it

would be over. I find my name in there as, “The nurse who keeps me amused and motivated.” It was a simple journal of his hope to wake up every morning in his own apartment, and eventually return to teaching dance.

His room is unlike the others. He has vases of bright flowers, posters from friends, cards from

family and loved ones, balloons, several teddy bears, and snacks neatly arrayed across the window.

With many of the other guys I get the feeling of transience, that their lives are a set of shifting locations, without any sense of home or place.

Paradise Alley isn’t some place home-like or inviting -- on its best days it is impersonal and

clinical, designed for efficiency and expedience; yet, it is neither. It is a slow bumbling groping in the dark for answers to a disease which offers few clues.

2 February

Britt has been here for about four weeks. Like many of the other people on the Alley with end-

stage AIDS, he doesn’t appear to be very ill, but that’s deceptive. He’s in that twilight state, where he hasn’t made the transition to really sick or well (was going to write wealthy, instead of well...

interesting, what becomes the new currency here).

Britt is a well-educated gay African-American man. I find it is easier to deal with the gay men

than the junkies. Most of the gay men here are middle class and have a circle of family and friends; but

many of the addicts have lost touch with their families. When I talk with Britt, I assume we understand one another, but he only tells me what I want to hear. He is from a small Florida town, where it was

difficult enough being black, let alone gay and black.

One day Lana, a nurse, tells me Britt is angry with me.

“Britt, the other nurse says you were angry with me? Can you tell me about it?”

He looks at me oddly, “No, I’m not.”

“So you’re not angry?”

“No. I need to go to sleep.”

Later, I found out he was angry because someone had mentioned the names of his medications

(AZT, Bactrim) while he had visitors, and was afraid they would discover he has AIDS.

But I’ve been too close to him and haven’t taken full notice of the small changes in him, he is

becoming aphasic and is now suffering memory loss. Since last week he has become even more

depressed and withdrawn. He knew that he had been losing his memory and tried to hide it. He says ‘close the house’ when he means ‘close the door.’ It’s like senility, a process of age and decay.

The diseases and symptoms which are supposed to afflict the elderly run rampant here. Britt at

forty-one sits alone in his room day after day, refuses to leave, and doesn’t much care for talking. He

sits in his high-backed chair and gazes out the window which faces the city. He cannot see the streets,

only the sky and tops of the buildings, and occasionally a sea-bird or a pigeon will pass by.

I think back on the beginning of Plague and its impact on the gay community. How many

people realized they were playing Russian roulette, and that every new relationship, or interaction, could be the fatal chance?

The other day I was talking with one of the major AIDS advocacy groups in the City, they

seemed as if they are claiming a proprietary right on this suffering and could be the only spokes person for PWAs (people with AIDS). In such a brief time, AIDS has already become so politicized; and, like with the cancer industry, politics dwarfs the human element. Will AIDS becomes so large of an

industry that a cure for it will continually get pushed farther and farther away, as the profits continue to mount? At what point does it become politically expedient to find a cure for AIDS? 3 February

Julio, the gay Latino nurse, and Lana, the nurse from the Caribbean, are on today. Julio makes

his position clear, “I just give them their medicines and leave. I don’t want to be near them for too long.”

Lana said, “A patient went to touch me last week, and I said, ‘Please, don’t touch me.’ You never

know what you can get from them.”

It’s fortunate that there is soap and water. But how do you wash away indifference and

antipathy?

Saturday, I had the opportunity to talk to people for long periods of uninterrupted time. Jason

Cliff and I talk on and off throughout the day. He is a tall and elegant African-American man, about

sixty. I find it a refreshing change of pace to talk with someone who is so articulate. He tells me his

story about being a writer and his travels through North Africa in the l950’s, the places which I know

quite well. Our memories of Tangier meet and blend. As a child in the l950’s, I had visited Morocco, and also lived there as an adult. Had our paths crossed before?

Jason alludes to how he acquired AIDS. “I wasn’t particularly active and in fact, many times I

didn’t care whether or not I had sex. But I got it anyway.”

His anger at the doctors and this hospital is vivid. “I ask for the results of my tests or an answer

to when they’re going to perform this test or that, and to explain to me in plain English what’s going on,

but they don’t. They think I’m being ornery and uppity.” That is an interesting choice of words, “uppity” used to mean a black man who didn’t know his place.

I see it with the staff, they sometimes look towards the guys and think “JADN - just another

dumb nigger” - Ahhhhhh! Is it because a lot of these guys are indigent and not well educated (both white and black) and therefore the physicians and staff treat them like “JADN”?

Dante, the hairdresser, is suffering from renal failure and takes on a yellow pallor. When he

was first here, he was cursing me out for being stupid and every time I came close, he snarled. I didn’t

take it personally; he was angry at his disease and his inability to fight it. Anger is not something we

deal with in any kind of straight-forward way. The patients who are angry are termed: non-compliant,

aggressive or suffering from ‘Personality Disorders.’ If you were thirty five or forty-five years old in the prime of your life and dying from an incurable disease – Wouldn’t you be angry?

OASIS:

There is a great deal of suppressed anger that needs to be voiced.

I want to create a center, neither a hospital nor a clinic, where people with AIDS can go. A place

not for dying, but for living. In this vision I see people eating good nutritious foods, using herbs and

homeopathic medicines, exercising, and lying out on a beach. I see a place unencumbered by the

narrow mindedness of allopathic medicine. It is a place not for dying, but one for celebration and affirmation. I would call it an Oasis, a place where new ways of healing can take place.

People have been bandying around the phrase, new paradigm, for so long without a context.

Here is the context for the new Paradigm: It is AIDS. With the demand for care exceeding society’s

ability to pay and care for those who have AIDS, let alone the thousands more that it will afflict, we need to create new ways of caring for the sick. Preferably the emphasis will be on prevention and

addressing the socio-economic roots of the problems. But we are not a society given to the long term view, we are a culture of the instant and the now. AIDS continues to change and to impact on society faster than any of us are prepared to deal with.

In the brief time AIDS has been here, its impact on sexuality, the gay community, and health

care has been enormous. In this year, health care costs for someone with end-stage AIDS is in excess of

$l00,000 per annum per person, which doesn’t take into consideration the cost of providing him/ her with housing and social security. In addition, many of the men and women with AIDS have led

productive lives: Nuryev, Ashe, and thousands more who have made great contributions to society, are

lost. Today, I read the obituary of doctor who was a leading AIDS researcher, who had danced with the Toronto Ballet, and was a national skating champion: Dead at the age of thirty-five from AIDS. But this impact on Western societies is dwarfed by the decimation caused by AIDS in

developing countries. In urban areas of Uganda as many as 20 % of the population is affected, in

northern Thailand l7% of new military recruits are HIV positive, and in parts of central Africa one in four persons is HIV positive.

As our neighbors and friends become sick do we retreat, do we turn away from them? If our

lover becomes ill, do we lock him or her out of the house, as I’ve seen several people do? When our brother or sister has AIDS do we close the door on them?

If AIDS is a disease of isolation, the end of that disease will be when we remove the reasons for

that isolation.

4 February

This morning the bright orange sun rises at a waddling pace and the sky is traced with purple

and violet clouds. I’m tired to the bone. This work is not only emotionally demanding, it’s an intense physical drain on me as well. At the end of a day I’m absolutely exhausted.

The question which continually comes back is how do we best survive? Most mornings I

would get up do yoga and meditation, but because of time constraints I’ve cut that out. In doing so, I’ve cut out one of the sources of my strength and well being. In working with the acutely ill and

people with end-stage AIDS, one needs as many of these nurturing and supportive mechanisms as

possible.

Michael, the nurse, and Britt, the medical technologist, are sitting at the end of the hallway

talking to one another. Michael says, “Since I’ve arrived I’ve been stuck at least one hundred times.

Look at my arms.” His slender white arms look as bruised as those of a myopic mainliner.

Is it like the old fashioned practice of leaching, where you would suck out blood in the hopes of

driving out the evil humors?

Britt says, “Lab tests are done and then repeated, but no one explains the results. Even if they

have the results, sometimes they lose them, and the tests have to be repeated. Then tests are done

again to verify the results of the test before! These people are crazy. Then a technician comes in at 6 a.m., normally she wears glasses, but this morning she’s forgotten them, and draws blood from the patient next to me by palpation.”

Maybe it is a form of voodooism? If they stick enough pins and needles into the icon, the evil

spirits will flee?

There needs to be a billboard at the entrance of the Alley in neon glowing letters:

“DOCTORS! NURSES! TECHNICIANS! ANYONE WHO COMES HERE TO VISIT - - ON THIS WARD

ARE REAL, FEELING, INTELLIGENT FLESH AND BLOOD PEOPLE: NOT SOME DAMN SET OF CLINICAL SIGNS AND SYMPTOMS !”

Hospitals and HCWs have a tendency to de-empower patients, and discourage them from being

actively involved in their care. We don’t trust patients to know or have any genuine understanding of

their illness. They are to simply accept the treatment program and believe that it is in their best interest; otherwise, we define them as non-compliant.

The Recreation Therapist is asked for an activity for Joey. Her first response is, “He’s a pain in

the ass.” His needs are reduced to what works or doesn’t work for her.

6 February

I told Sandy that the night shift, again, left Dante lying in a pool of diarrhea.

“You don’t know for sure it was left on by the night shift.”

Now at this point I need to take a deep breath. “He had to be showered and scrubbed off, and

there was shit all over the outside of his blanket. He said he had moved his bowels at four o’clock in the

morning and called for help, but no one answered the call light.”

“You don’t understand.”

“What don’t I understand?”

“These nurses have volunteered to work here.”

But the patients haven’t. My fuses are going out quicker than the 1965 blackout. “Look Sandy,

it certainly appears that he has been lying there for several hours. When I first did my rounds I noticed it, but I had a sick patient in the first room and as soon as I got through with him, I helped Dante. You couldn’t miss that he was soiled.”

Katy, the other nurse said, “I saw him earlier but he didn’t want to get up to be changed.”

“Katy, if he is lying in shit, he needs to be changed, regardless of what he wants.”

I realized I was talking to people who really don’t give a damn about these patients. That is

what I’ve been angry about for the past few days, people don’t seem to care about these guys. There are

too many nurses here who play IV and medication nurse and don’t render direct care to patients. The

nurses walk around like they’re too busy with passing medication to sit down and talk to a patient; yet, they have hours to talk about their boyfriends or children.

We don’t always need to be hypervigilant or always working, but we must recognize that we

have a unique opportunity to be of service to these people who have so many needs: physically, emotionally, and spiritually.

This is the impetus for this writing, a cri d’couer, a cry from my heart and soul, to open our eyes

(mine as the first), and communicate with these men. But it’s not just one person who will change the status quo, it requires each one of us to initiate and support the change to a humane, client centered environment.

Though our work in Human

Services is focused on restorative care, by necessity, we must also be engaged in changing the political

dynamics which are involved in AIDS and health care. Change will only happen when we start to raise our voices and a little hell. Political activism can no longer be the sacrosanct pen of the political activist, it must also be part of our work as health care professionals.

I worked with Tyrone today. When he was assigned to me, two weeks ago, he was out of bed

for an hour in the morning and an hour in the afternoon, walking down the hall with his walker, and

most importantly, conversing and interacting. He was making progress, not great, but at least he was holding his own. When he was assigned to another nurse, he stayed in bed all day. Today, he is out of

bed, showered, and even walking a few feet. We slowly rebuild some of the work that we began weeks ago.

One of the roots of the uneven care on the Alley is an absence of leadership. Though there is

something to be said for a casual and familial leadership style, there is little sense of integrity and

commitment. We are a set of random events and activities which react to events in a knee jerk fashion,

moving from crisis to crisis. There is no initiative to build and create a community of health care professionals. When there is a lack of leadership, there is a consequent lack of responsibility.

A staff meeting was held and I suggested the patient’s need more counseling. Sandy said, “We

can’t allow time or training for counseling patients, because we wouldn’t have time for patient care. If a patient needs psychiatric services we can have him referred to a psychiatrist.”

“Why do so many of the guys call me over and ask if they can talk to me for awhile? And what

about the guys who are recently off of drugs or from the streets, they need counseling at that moment, or some kind of regularly scheduled therapy sessions. There isn’t enough.”

“But we do have therapy, once a week led by Jean Pierre. Trust me, that is more that these guys

would ever get.”

Sandy was uncomfortable with the staff meeting and my presence. As a result, she changed all

subsequent staff meetings to the days I was off. Intentional? Perhaps.

We need dynamic and caring Health Care Workers, but in order for them to continue in this

work, we need equally dynamic and nurturing leadership; otherwise, all our good intentions will be squandered.

If a leadership style could be a day, then the style here would be like an August day in

Savannah, so hot and humid it numbs you. There is a lethargy of mind and spirit which grips this place, and a thickness in the air that causes even the flies to fall asleep.

Yesterday, I ran into a new face on the ward, the Assistant Director of Nursing. She explained to

me, almost apologetically, that she had taken a wrong turn and wound up here by mistake.

I’ve thought about leaving the unit and taking a different assignment, but I know it’s important

for me to be here. What I do and how I do it frequently makes a great deal of difference in the lives of the men here on the Alley.

Two days ago, Nathan wanted to talk to me. I told him,”Later.” I didn’t have the time to spend

with him. But I caught myself. I noticed that I avoided talking to him. Why? His face is distorted,

palsied, and blind in one eye by Karposi Sarcoma. This morning I initially stop at Nathan’s bed for a

brief hello, but I force myself to sit and talk to him. This is one of the few places in life where there is no next time or later, it is now or never, literally.

This is Nathan’s second visit to the Alley; he was here several months ago, and was a nasty,

angry SOB.

I draw the curtains and as he talks, he starts to cry. He tells me of his brother who had just died

of AIDS, and another brother who was abducted and had his throat slit in a robbery.

“How is it that I was given up for adoption when I was four, sent to a foster home, grew up

separately from my brothers and we still wound up in the same situation? I almost never took drugs,

never even thought of having sex with a guy, and I still got AIDS. I had all the chances they never had. I went into the army at seventeen, worked hard, went to Germany had a good job, and had a wife who loved me. My son was born there. As soon as I get out of here, I’m taking him back to Germany. He’s

thirteen now, and I know he doesn’t remember anything about it. I need to go back there. For almost

three years we lived in Badden, it was almost perfect.

“Then, you know… you get a little bored, and start messing around a little taste of this and

that… not anything much. They even liked black people there. But my wife didn’t want to stay, she

wanted to go back to her family in Louisiana. What’s in Louisiana? Swamps, red-necks, and nothing for

me. That’s history though, next week I’m taking him with me to Germany, just him and me. He’s the

only thing that I have left. Here is a picture of him. “His son is the spitting image of Nathan. Nathan is crying, unashamed, tears fall.

It’s 8:30 in the morning and too early in the day to deal with this; but there is no choice, I need

to deal with it, because him and his pain are right there in front of my face.

Nathan complains about the Puerto Rican in the bed next to him says, “We know how to take

care of people like him where I work, at the city prison, we don’t take shit from no one. I asked him not to turn up his radio, and he is blasting it like there is a party.”

“No matter how far you’ve think you’ve gone to escape the past, the past is always there, look

at what is around here junkies, fags, and spics. And people around here treating me like just another nigger.”

We talk for almost an hour and then I need to go and attend to some of the other guys. That

was the last time we spoke. The next day I was off, and he left. He also sent flowers and a thank-you note to the floor, I appreciated that.

Dale’s mother told me that this is her second child who is dying of AIDS. Dale is forty-six and

greying, incontinent as a new born baby. When he needs to be changed she doesn’t put on the light to

ask for help, she does it herself, “I don’t mind I’ve been taking care of him at home for the past year. I only have one rule for him, no liquor or any of that other business.” That other business: heroin. She knows about it, knows where he has been, and despite a son who would have sorely tested Job’s patience, she hangs in there, unfazed. She says. “He’s my son, what else can I do?”

The black mothers who come in here to care for their grown children are so powerful. They

care for their children in a way in a way which is unbowed and quietly proud.

Last week, another man’s mother, took her son to the shower. She rolled up her trouser and

bathed him. No big deal, it was her duty. These are the women who have held the families together.

Good strong women. I am learning a new dimension to the words love and duty from these women: Maybe also faith.

These are my little shots in the arms, my vitamins for the soul, to watch these women.

When I was talking to Day he said, “One of the main regrets I have is what it has done to my

family. I think about all the time I missed with my daughter, she’s sixteen now, and I’ve missed more

time than I have.” When his family came, he introduced me. He seemed as if he was very pleased and grateful that they were there. Despite the distance and the drugs, there was still a lot of love there.

Maybe enough to give him a little more time.

NO GLORY:

“There is no glory in war,” said Sherman. “But it was a hell of a lot of fun burning down

Atlanta,” I imagine him saying. For certain there is no glory here. No heroes, no victories, no

triumphs, no progress, just the painful details of making it from day to day: Waking up, moving forward, gaining a yard, and then losing it, inch by inch.

I see the disintegration and the loss of control...the incontinence. These proud handsome

men who took such great pride in appearance are reduced to these often stooped, emaciated states.

Dante, the elegant hairdresser, is now too weak to even comb, or even care, if his hair is combed.

How can I possibly see a victor or hero in this? Survival is calculated from moment to moment and in getting through the gritty details of the day. The disease wears you down like a sandstone being abraded by a desert storm, until in the end, the stone is part of the sand and the wind.

I watch Willie Sanford move about the room with his I.V. lines and oxygen tubes; he is so

tangled up in them, the more he tries to free himself, the worse it gets. The I.V. lines and oxygen tubes

are like mooring ropes for zeppelins. I untangle the I.V. lines, the oxygen tube, and take off his posey. A curious name, posey, an innocuous flower, but it’s a restraint to tie the patients down to the bed, or to

prevent them from falling to the floor. If we could unleash these mooring ropes, how high would they sail, how far?

7 February

I hear the cold snap of the tree limbs as they beat on the lamp posts of the streets below. The

raw sounds of winter are heard through the slatted bars of the window panes. Each sound outside is

like a prayer which invites me closer. It is a prayer, because it is part of that ‘outside world’ we hunger for. We hunger to touch the trees, to feel the coldness, and marvel at the intense pale blue of the sky.

13 February

Jan, died on another floor. He had been here, but was taking too long to die, so they placed him

on a ward of old men. Jan, forty-one, dying in a room of old men. They told the men he had ‘cancer, not

AIDS’ - cancer was a word they understood, but AIDs belonged to a generation and a world the old men didn’t know. They knew syphilis, TB, and cirrhosis, but not AIDS.

Yesterday, the ward clerk, Tawanda, tells me she can’t order a sandwich for a patient because I

need a doctor’s order. I get angry; yet it’s very funny, though I couldn’t see the humor in it. I don’t have my humor when I most need it. She calls her supervisor, who defends Tawanda for not calling down for a sandwich.

Who wants this sandwich? Dante. A few more months away from dying and they can’t get him

a sandwich. I excuse myself and go down to the corner deli and buy him a ham sandwich, it is a lot less aggravating than trying to get one here.

Dante has on a clean johnny-coat, those gowns where your backside is open. His face is

yellowed with the skin drawn tightly over his skull, he has lost even more weight over the past week: he is five foot four and weighs about eighty-five pounds. There is no fat left on his body, it is

catabolizing, the body is devouring itself, utilizing its own flesh to survive.

I spoke with Dante this morning and he tells me about his life before, the life before AIDS. “I

used to travel with the best, people with style, people who wouldn’t think twice about spending two hundred dollars to get a haircut from me. Everyone knew me, or at least anyone that was worth

knowing, knew who I was. I used to have very beautiful clothes and traveled only with the best. In the

summers, when ‘they’ would go to the Hamptons, there was always a place for me. When I get out, and a little stronger, I want to open a salon, not like the shops here, but quality,” he says the word slowly as if the word itself is precious. “The kind of shop where people don’t ask how much this is or that is. Do

they think that I would open a bargain basement salon? No, Dante only touches quality, and if not

quality, then at least those with lots of money.” He smiles when he says that. “Money, when I had it,

there was always people around, but now not so many. Besides, I don’t want people to see me like this,

I want them to remember Dante when he was on Fifth avenue, not like this.” He falls asleep as he finishes his sentence.

His niece and nephew are coming around a little more. A rumor has it that when he was last

discharged, he went out and bought himself a Cadillac, however, he became too sick to drive it. Now the niece and nephew use it. It is the same phrase I keep hearing in the back of my mind from several other guys, “When you die can I have your…”

NO FRIENDS, ONLY ALLIES:

I come back after a few days away and Nathan and Jason Cliff have been discharged home.

Some say to me, “You’re the only real friend I got.” I usually smile and nod my head, but I am

not their friend. That implies we’re on an equal basis, we aren’t. If I’m kind or pleasant, it’s because it is

part of the healing relationship.

Raphael Jones wanted my telephone number and address so he can visit me when he leaves. I

declined to give it to him, it wasn’t that I didn’t like him, I can’t afford the luxury to be available to him.

If I am to survive, I cannot be there all the time. I cannot be all the relationships that they didn’t have in

their lives.

When I taught high school, there were two senior students who wanted to have something

more than a teacher-student relationship. Though I found the offer flattering, it would have destroyed my ability to be their teacher. Though they may not have known that, I did, and therefore it was my

responsibility. Otherwise, it is taking advantage of another person’s needs. We do this frequently in the helping professions; we confuse helping someone for friendship. We need to get our emotional and psychological needs met outside of the helping relationship. This is so difficult to remember;

especially, when sometimes you know more about the person and their struggles than many of their closest friends. Will I get close to a patient when he or she is dying, so close that when they die I will

cry? Very certainly. That is both the risk and the paradox --to work with the sick and dying requires

one to love; yet, we cannot love in the ways that we are accustomed to. We cannot love them as we would our partners or friends. We need to love in a way which is intimate and yet preserves that “healing relationship.”

DANTE IN THE HOSPITAL SHANGRI-LA

My ounce of spleen for the morning seems as if it has grown heavier. I was leaving the hospital

and someone asked if I was leaving for the day.

I said, “No, I need to go outside and howl and scream, cathart for an hour or so.” I was not

kidding. I had my dose of stupidity of the morning and reached my overdose early today.

Dante is again covered in shit this morning, and for the third time this week the night shift left

him lying in bed and refused to clean him. When I came in during the morning I stopped Sandy, “Dante is soiled again and has been that way since early morning. This is the third time this week they’ve left

him like this.”

“You don’t understand.”

“What don’t I understand? He’s covered in shit, what is there to understand?”

“We need to talk later, it has to do with the way you’re seeing it.”

Eureka! She’s right. It is a problem in my perception. I finally see the light. If I close my eyes,

then Dante, his shit covered sheets, and the whole problem will be resolved.

I can’t believe how stupid I’ve been. If I had only known that was all that I needed to do, I

would have never been subjected to my own failings and ignorance. Just close my eyes. I tried that this

morning, and though I bumped into a few walls, it worked. I was able to conjure up a place where we had only Good and Perfect Patients, a Good and Perfect Hospital, Good and Perfect Nurses, and yes,

best of all, a place where patients didn’t shit in their beds. It is so easy. Close my eyes and imagine in

the fine recesses of my mind a very perfect Hospital Shangri-la. Unlike this high-rise hotel for the sick.

Dante’s eyes are filled with peace and sleep. He is dying. I recognize my attachment to him. We

have struggled over the past few months to find a common ground. Now I feel as if I am on the shore

watching part of the island break away and drift out to sea. Like the Inuit who place their dead on an

ice floe, a body being carried back to the Mother Sea. In preparation, I massage and oil his skin. I shave his thin wispy whiskers and comb his greying hair. I honor that which is him -- vain, proud, human,

and very tender.

I love that which is him.

Michael, the nurse, seems like a different person. He is making a comeback against all odds, he

didn’t have a prayer in hell of coming back from this, but he found one. He reached into some

incredible pool of strength and came through. It wasn’t the medicines, the doctors, the nurses, or even

his lover Philip, it was him. It was like watching Joe Montana in the last quarter of the Superbowl, with a few minutes on the clock at his own end zone, leading a three minute drive to a goal.

This is the bitch of it. You come back and make the great effort to reach the goal line and want

to believe the game is at end so you can put up your feet, have a cold beer, and enjoy life. No, with end stage AIDS you recover, but only gain a little more time. As you get closer to the end, the time is

measured in hours of wellness, hours of not being in pain, moments when you’re not going through the

sweats or the diarrhea. The moments of being well are as precious and rare as rain in the Sahara. And remember, drink your beer while it’s still cold.

The guys who are on their first stay on the Alley look cautiously through the window of room

sixteen or ten. The rooms where those who are a short distance away from dying are kept. The doors to these rooms are often closed, but through the tiny windows, you can see the nurses attending the

dying…

I wonder if those who care for the dying see their own mortality? I watch Nina work with

Pablo, who is semi-comatose. She is talking to another nurse about her son, his dates, and her vacation

while they’re cleaning him. They seem oblivious to Pablo; it could be a log in front of them, something to be washed and changed, and then covered up with a fresh sheet. Maybe he was too sick to notice,

but I don’t think so.

Love, like a light switch either on or off, nothing in between.

At the end of the day, Dante is talking with Carlo the housekeeper, he says. “Thom is a lot like

me, we’re both kinky.” Kinky? What an odd kinship.

Tyrone is leaving today. As he is sitting in a wheel chair waiting for the ambulance to take him

home, a nurse’s aide Irene, stops to put lotion on his legs. Suddenly we are paying attention to Tyrone, when before, he was often left alone and ignored. I wish they had been doing this all along with him.

I said to her, “Thanks for taking such good care of Tyrone, I appreciate that.”

This ward can be a place of real healing and act as a powerful catalyst for change if only we

have that extraordinary courage - the courage to love.

14 February

Valentine’s Day. A day for love. But where are the lovers? Where are the men and women who

loved and desired these men? Why do so few visit?

During morning report I told Dr. Gold that Joey’s results are back from his TB tests: he is pan-

resistant, resistant to every kind of antibiotic. It was suggested that we need to develop a strategy to help him maintain better isolation techniques, since he is so careless in his personal habits.

“No, that’s not the answer, we need to sedate him more.”

“Dr. Gold, he’s already in a stupor because he’s already over-sedated.”

“In that case, let’s restrain him.” She walks away. Case closed.

I felt as if I heard her say, “Tie the animal in his cage and throw away the key.” He was no

longer a person, but a set of signs and symptoms which had gotten out of control.

THE GOOD DOCTOR AND GOOD PATIENT HANDBOOK:

For any patient to fall into the category of “untreatable” is probably an offense against the

“Good Patients Hand Book.” I imagine this book circulates in medical schools and clearly defines the

relationship of doctor to patient, and what patients are to do. I believe it is the reason why I have such

difficulty understanding Doctor Gold. If I only had that book available then it would all become so clear and I would no longer have the privilege of wallowing in my ignorance.

I imagine the book would say, “Now there are only three kinds of patients: Good patients, bad

patients, and the dead. But when they’re dead, they’re really bad patients, because they apparently

didn’t follow their treatment. After all, there really is no reason why now in the 20th century that

anyone should die, as long as they pay their doctor bills, take their medicines and do exactly as they’re

told, we should only have good patients. If patients do as they are told, and doctors do their thing, the world should be - perfect.”

Flipping through this illustrious tome, I imagine there must also be a well thumbed section

called LAWYERS and PARASITOLOGY. “In life there are two kinds of lawyers: good lawyers and bad lawyers. Good Lawyers helps us collect our fees, and prevent bad ones from collecting settlements

from bad patients who don’t follow the rules. Medicine is very simple, if only patients and lawyers and

others didn’t interfere with good doctors then we would have a much more perfect world.”

There is a medical school somewhere called Good Doctor College where there is a wise and

calm, pipe smoking Good Doctor Mentor. Strolling through the thickly carpeted corridors we come to

an office at the end of a line of well-appointed and spacious offices. We knock, and open the door to a

sunny wood paneled room with stout leather chairs and rows of leather bound volumes from floor to ceiling. Seated in a throne like recliner sits Good Doctor Mentor, who begins to speak to several

acolytes who are gratefully absorbing his wisdom, “Yes, good patients are the ones who follow the

doctor’s orders, don’t defecate in their beds, take their pills and potions, get better, and PAY THEIR BILLS ON TIME. I wonder sometimes where have all the good patients gone?” he muses wistfully.

“Today medicine has become a strange and mysterious world. Damn! There are too many bad patients these days and especially with AIDS; fees are late, and insurance companies are always complaining, bad patients die, estates are in litigation, and good doctors don’t get their fees on time. Bad Patients

become even badder and are reincarnated as bad debt, and maybe even as -- default. There must be a

place in the lowest circle of hell for these patients. Damn them!”

Good Doctor Mentor sighs as he puts down his pipe and turns to gaze at the neatly manicured

and expansive lawns of Good Doctor College. “You see,” he says, “this is the kind of world we need,

green fields, without the blight of tombstones, and uh...” suddenly he pops a nitro under his tongue,

swigs a mouthful of cognac, and shudders, “...no death.” The flush recedes from his face, the muscles

relax, the cognac warms the chill, and he smiles peaceful in his reverie. “Only good patients as far as the eye can see. Yes, only good patients.”

The sun sets serenely on the bucolic splendor of Good Doctor College.

l5 February

When you’re dying, you become aware of how precious a moment is. You become aware of

your body in all its very frail limitations; its strengths, and the pleasure and the pain of what it is to be human. It is a rare awareness that so few of us hold or appreciate. We see the life part, but not the death, not the ending, and so therefore only see the small part of what it is to be human.

I walk through these halls. As I pass room sixteen I hear the labored breathing of a dying man.

One man is getting up and out of bed to return home. What do the other men see when they walk past those rooms? Do they see themselves or do they ignore it?

At the end of a life do we ask, “Was it a vision or a waking dream.” What do we say of a life?

The Alley is rarely far from my attention, it becomes like a wall to me; it is built of all the

doubts, questions, and ambiguities I’ve known. It’s like the Wailing Wall in Jerusalem, where prayers on parchment are tucked into the crevices. In that wall I would like to place a lot of prayers. In my

personal wall, the one made of all my doubts and frailties, the wall which prevents me from coming to

terms with myself, I would like to put a couple of sticks of dynamite into it and blow it sky high. This is the wall I need to destroy. No, that is too much of what I’ve done in the past. I have the patience of a hungry child.

18 February IF I HAD WINGS TO FLY

Spoke with John, the psychologist, who is leaving Paradise Alley after four years. He tells me

this story:

A homeless man with AIDS one night climbed on to an apartment building roof to avoid the

dangers of sleeping on the streets, where you could be mugged, robbed, or set on fire. He slept

peacefully until the next day and woke up to the bright sunlight which had washed over the roof. It had been tarred the day before, and now the sunlight was melting it. If he screamed and called out, who

would have come anyway? In my mind’s eye I see him so vividly, frozen in place. Ever so gradually, he freed his arms, and after what seemed like hours, the rest of him was also freed. Tar-covered and

exhausted, he made his way down to the street. He found some discarded clothes from a bin behind a clothing store, and then washed himself with gasoline to get off the tar.

No home for refuge and sick with AIDS: What keeps a soul alive? Is it stubbornness and the

refusal to surrender? Or is life more fundamental than that, putting one foot in front of the other? l9 February l992

Joey looks like an unmade bed, his face is drawn and unshaved, skeleton like and yellowed,

there is a shadow which hangs around him. Is it the AIDS or the addiction? I can’t tell nor do I think it

makes a lot of difference at this point in time. Joey, in a stupored haze, walks up and down the hall.

Though he is stoned on meth, tranquilizers, booze, and a few miscellaneous things, he looks at me and from eight feet away, raises his sleepy eye-lids, and tells me I have some feces on the side of my shoe.

This is the person who is supposedly so sick and drugged out that he doesn’t know what is going on or responsible for his action ?

He amazes me, his ability to survive and find drugs at a moment’s notice. He’s a walking

disaster, not just with the TB, he’s already set fire to his mattress twice this week. I take away his

matches and cigarettes and would prefer not to treat him like a child, but I do. I need to keep in mind his dignity and my safety.

I step out of the hospital for lunch. I need to wail and rage at the madness. I need to be still and

tranquil. I walk down to the local pizza shop, and appreciate what so many of the guys would love to be able to do: to have the freedom to stroll down here, eat pizza, and watch life on parade. I revel in that simple freedom.

Why does poor patient care bother me so much? This is the question that has been on my

mind for the past few hours. Then I recall an uncle of mine, Pop they called him, who was in the

hospital when I was eight years old. A nurse came to help him to the bathroom, his sheets were soiled with feces and that stayed in my mind. Why was he soiled? Why hadn’t anybody helped him to go to

the bathroom? I forgot about the incident until today, that first lesson of poor patient care has stayed with me for the past thirty years.

20 February

Last night I dreamed I was HIV+. I couldn’t fathom how I had gotten it, my lifestyle would

preclude that from happening, the same line that at least half the guys on the Alley give. Had I gotten it from a patient? My wife? No, none of it was logical. I was angry and afraid; suddenly, time was very

precious, as I saw my slow and gradual wasting. That enormous pool of time which I thought was mine, the “promise” of a good seventy-five years, was a lie.

The Catholic Workers visited Joey to tell him that his wife, Jane, was to be cremated today. He

initially wants to go, but decides against it. Jane died of AIDS, and as did their seven month old baby last year. The baby never left the hospital. He talks about Jane and cries. His eyes roll back in his head, he can’t focus because he’s over-sedated on prescription and non-prescription tranquilizers, and he

struggles to get past the haze of all the medication. He tells me about Jane and himself, and there is a faint smile on his lips, “St. Marks, on St. Marks we used to go there for movies or to walk around.

Sometimes we would get out of the city to Jones Beach, she liked that. But in the last couple of years it’s been the sickness. First, the baby, then Jane, and now me. I’m going to be the next one to die. I’m going to be then next one.” He nods off in the middle of the conversation, and after a few moments he picks up on another thought. “The night staff is abusing me, tying me down, no respect for me at all.” He wants to leave, but can’t put a plan together to leave. The idea of being out on the streets, getting

shelter and food and taking care of himself, is beyond his grasp. When he tried to sign out AMA (against medical advice), the answer was, “No, the hospital won’t let you.”

I see the fear and anger in so many of the staff towards the junkies; deeply imbedded poor and

working class values. There is the implication, if you’re good and follow the rules, you don’t get AIDS;

after all, addiction, and AIDS, only happens to the bad and to those who have failed.

Julio, the nurse, holds a curious mix of compassion and loathing for these guys. I think he has

the compassion for the gay men, but the junkies are, as he puts it, “trash”. He tells me that Sandy and

her coterie, from a poor Southern and fundamentalist church background, see AIDS as retribution from heaven and a punishment for a wicked life-style. It is difficult enough to work with these men for what they are, people who are sick, without adding all these prejudices and biases. These biases are like a slow poison which filters into every corner of the ward.

AIDS inspires a strange brew of emotions, fear and even loathing. The tragedy is when we

allow those fears to displace our compassion. I’m frequently asked, “Aren’t you afraid of working with

AIDS?” Tuberculosis makes me nervous because it is so easily caught, but not AIDS. However, the real

heroism we need is to look into the face of our most intimate fears. It is too easy to be seduced by those fears. When we walk through this valley of shadows, here on Paradise Alley, whose shadows do we fear most, our own or those we care for?

Pancho is a forty-three year old Viet Nam vet, whose body is covered by street tattoos and gang

markings, and there is tattooed demon on his back which extends from the base of his spine to his

neck. Talk about art imitating life. His stomach is bloated from cirrhosis, his skin is the color of yellow

roses, his eyes hollowed and shadowed, and there is a bitterness about him. A bitterness which comes

from tasting the charred pieces of too many burnt dreams. Like the Celtic sacrifice, those who drew the blackened end of the bread were sacrificed. Pedro has bitten into each broken dream, and now there

are no more to be conjured.

I look into their faces and see those who have lost the time and, even, the will to dream. The

dreams which are now narrow and small, receding by the moment. You can almost hear the sounds of the waves rising to high tide, the waves from a farther shore that are ready to carry the bodies out to sea.

I carry few hopes and promises these days.

How Far Away was Yesterday?

Trying to recall yesterday and the events on the ward. I laugh. Isn’t that what so many of the

men on the ward do, they try to remember yesterday? The yesterday without pain, diarrhea, and the loss of control over their lives and their bodies.

Jack is lying in bed reveling in his methadone, that little flavor of ecstasy. They say you can’t get

high off of meth, but there is a peacefulness in his face which belies that. It could be nothing more than my desire to see the men peaceful and without pain.

The thing which is most difficult to deal with in the acute episodes of end-stage AIDS is the

bone rooted weariness which comes from chronic pain, fevers, night sweats, and diarrhea. For the

most part, these men are too young to die of natural causes. There is an absurdity in dying of old age at thirty-six: The spirit rebels, and though it is weak, it has not lessened the soul’s will to stay alive.

Raymond is screaming, “No fucking way am I taking this medicine. You can call the police, call

the army, call the goddamn doctor, but I am not taking that medication. Do you hear me!”

“Ray, do you think we can talk about it?”

“See, you’re giving me the same kind of bullshit that everyone else does. You’re like the rest. I

ain’t wearing my mask and I ain’t taking no medicine.”

“Maybe a simple ‘no’ would be enough Ray?”

He turns around, angry, and guardedly smiles, “Damn right I’m angry, the doctors don’t tell me

anything. They take tests and don’t tell me the results. I am tired of being treated like I am some kind of lab rat to be poked and tested and then not told anything! I don’t even have TB and they still have me

wearing a mask. Look at my results, they’re negative.”

He’s right, they treat him like JADN. “Well, would it help if I spoke to the doctor this morning

and explain to her the situation?”

“Maybe.”

WHAT IS THE MYTHOLOGY OF THE PLAGUE?

What does AIDS say to us at this moment? As the mythology of Job spoke of abiding patience

and faith, and the Buddha of compassion, what will be the mythology of this age and plague?

My mythology is rooted in the struggle to maintain hope when there is little to be had, the fight

of the men on this ward to maintain their dignity and self respect, and the rare triumph when the sick

do get well. But to expect miracles is foolish. Instead, I celebrate the miracle as the ordinary moment to moment occurrences: When I can sit down and talk with someone who has been isolated and living

alone on the streets; when two patients are talking about how they are going to be a support team and help one another stay healthy and clean; and when a nurse or a physician sits down and listens to a

patient. These are the real miracles I celebrate.

As AIDS evolves, the stories of our loved ones who have died are woven into the tapestry of

unanswered questions and prayers. We chant kaddish, or whatever words come to mind, to heal our grief. We embrace family, friends, and even strangers to find comfort.

But the hope for some better tomorrow is a deceit. My mythology begins with this, “Give me

this day! Give me this moment! Not tomorrow when I may be dead or too ill to savor how wonderful it is to be alive. Give me this day! Give me this moment!”

The Plague is on the land and answers seem even more elusive. While we can peer into the

throat of an AIDS virus, we cannot understand its soul or reasoning. From the inexplicable matrix

where reason, faith, and chaos collide, we need to tell our stories and celebrate the memory of those we’ve loved.

I am struggling to discover and reclaim my personal mythology, that which makes me

powerful and compassionate. Who are my references? Walt Whitman, the poet and nurse, who during the Civil War held the hands of the sick and dying, and wrote letters to their families. Thich Nhat Hanh, the Buddhist monk, who reminds me to breathe. My friends, Michael and Dan, who have taught me

more about compassion in one glance than I’ve gathered in volumes. My mythology is not an abstract idea removed from my work with end-stage AIDS patients or my writing, it is an integral part of the work and my self-discovery. It is a thread of many colors, woven and unraveled and woven again, a thread that when finished and knotted, will tell the story of a life.

Each person’s mythology is created anew every day, consciously or not. My work, mirrors my

growth and healing; as a man, a nurse, and a person...not separate, but at its core the same.

I fear that I love the cool comfort of the shade too much. I would prefer to remain at rest,

undisturbed. The fight is to move against my lethargy and laziness. The quest is to create and to love.

What is the mythology of AIDS? How does it speak to you? In what way can you speak to it?

Dante still looks gaunt and frail; yet, today he is walking along the corridors. I know he is

dying, and he does too, and for that I admire his guts to keep fighting.

“You know as sick as I am, if the night staff give me anymore shit, I’m going to get up and smack

them right in their face. When I tell them I need to be changed, they tell me they don’t have the time.

And when I get up to go to the bathroom because I’ve been waiting for over an hour, they come in and tie me down like I’m an animal.”

“You’re right. Don’t take any crap from the night staff and call the hospital administration to

tell them.”

But he doesn’t call, he will be going home in a few days. Perhaps lousy care is good in that it

will encourage people to get out of here, however, I don’t buy it. There is no excuse for poor service.

I say to each man and women who comes here -- Fight against the dying light! Do not accept it.

Though my Buddhist tradition points to acceptance and surrender, my Celtic ancestry says, “Let’s make a great war on this enemy.” The enemy is not death, the enemy is our apathy.

As I was leaving the floor, several of the guys were sitting around in the lounge, and one guy

asks, “How was your day?”

Raymond was sitting there, and I said, smiling, not looking at him, “It was fine except for one

brother this morning who I tried to give medication to and he curses me five ways to Sunday. He

screamed that he wasn’t going to take his medication. I could call in the army, the National Guard, and

Mohammed Ali himself, and he still wasn’t going to take his medication. Then I asked him - “Are you trying to say, no?”“

Raymond is laughing. I say good-by. As I’m around the corner one of the guy says to another,

“You know, he’s all right.” To hear that, made the day very worthwhile.

21 February

AIDS HERALDS THE NEEDED REVOLUTION:

People don’t realize how rough nursing is physically. Frequently, we wear our physical and

emotional turmoil as part of our uniforms, and internalize our pain. Back, neck, shoulder and leg pain

are rife through the trade. We are told to bite the bullet -- stiff upper lip and all that. Yesterday, out of a staff of five, three were working with physical problems, which in most other trades would have

caused them to be on light-duty work or sick leave.

Is it part of that societal-wide female oppression which so readily translates into nursing?

Despite the occasional male nurse, it is a trade/ profession predicated on a female cultural

consciousness. Each culture has a positive and negative component: In nursing, we strive for

nurturance and compassion, or so that is the line espoused; however, nurses are told to suppress their

needs. In the care of others, our needs are rarely considered or addressed. We continue to work in

unhealthy work environments, punishing our bodies and our spirits as well, absorbing an enormous amount of physical and psychic abuse. When nurses ask for a simple thing like a hoya lift, which

should be available to lift heavy patients, the frequent response is, “Oh, the girls on the floor are plenty strong.”

Many of the women in nursing are engaged in nurturing care at work and then come home to

husband and kids, or lover/ partner, to offer some more nurturing. You wind up with someone who is engaged in nurturing and caring around the clock, year in and year out. If that doesn’t get one burnt

out, I don’t know what will. The consequence for the patient is the person whom your life may depend upon is sometimes too frazzled and exhausted to give you the time and care you need.

Nurses seem to have a masochistic streak, which is fostered by the trade. Notice the response

I’ve heard given at least a few hundred times when a female nurse calls up the office and says, “I’m

really short staffed today, do you think you can get me some more help?”

“Dear, (I always love that patronizing term) when I was a floor nurse we wouldn’t complain

about being short, we would make do.” Or, “I’m really trying to get help, but you know how it is with the nursing shortage, do the best you can.”

When I’ve been short-staffed I’m a bit more direct, “I have twenty patients and one nurse and I

am not accepting the floor until I have two more nurses.”

I’m not asking that they help me, I’m telling them, either I get help or I am not accepting the

floor. Period.

Why do nurses accept so much needless bullshit?

Hospital administrators, for the most part, don’t give a damn if you have help on the floor, or

that you’re literally running for eight hours a day, changing IVs, giving bed-pans, changing dressings,

and the several hundred other things a nurse does during the day. We often work as if we are a front-

line combat hospital triaging patients.

As nurses we need to spend less time complaining (that passive-aggressive kind of

complaining, which reinforces our hopelessness and prevents us from really changing much of the needless nonsense which goes on in hospitals) and focus on advocating for genuine change. By

advocating for change, we are demanding to be partners in deciding how we work and under what conditions. When we begin to move out of our passive mind frame and become active agents for

change, then and only then are we going to get the kind of environment we need and want to work in.

Who knows we may even be able to get down to business and do what we originally set out to do, which is to provide high quality care to our patients.

When we empower ourselves as health care professionals, we have the chance to pass on that

sense of power and purpose to our clients/ patients. Ultimately, the transformation is to enable the

client to end their roles as passive recipients of health care and become active partners in their recovery and well being.

When Lana comes to work she opens up a nursing diagnosis book and writes nursing care

plans for most of her shift. She rarely gets away from the safe fortress of the nurses’ station. When she does, it’s to order a nurses aid or an LPN to do something she doesn’t want to do, like touch a patient.

The paper-work which defines so much of a nurse’s life, becomes a wall which separates her

from actually going out there and mucking about in that strange wilderness of patient care. Those wonderful patient care plans, which she and others spend copious amounts of time writing, once completed, are filed away and rarely discussed with patients or other staff.

In order to begin this change process, we need to change our vocabulary. First, throw out the

term patient. Its origins means to suffer, and it implies you are required to be a passive recipient of Health Care, to be “patient” with the care you’re offered. I prefer, “health care consumer or client,”

terms which imply choice and mutuality. It also compels you to be an active partner in your care. The

bottom line is that when you’re in a hospital or clinic - Don’t accept or expect one ounce less of care

than you deserve.

If you’re in the hospital and not getting the care you deserve, don’t complain to the nurses, for

the most part they’re as powerless as the patient care representatives, complain to the Director of

Nursing and the Director of the Hospital. When the administration is informed, then there is the slight possibility that the inequity can be addressed. If you get great nursing care or service, make sure the

hospital knows it, write a letter or even a short note to the Hospital Director, and a photo-copy to the

nurse or staff person who helped of you. While good patient care should be routine and expected, it is neither.

AIDS is the impetus for change in health-care. But many of us are staying stuck in the same

antiquated hierarchical modes of health-care services, with management practices that went out in the Middle Ages. Whether the medical system and pharmaceutical companies likes it or not, AIDS is changing the way that health- care is provided, and in ways that we can’t fully anticipate.

What will compel hospitals to look up from the bottom line of their ledgers and peer into the

future when hospitals are overflowing with AIDS patients? Will the system come to a creaking grinding standstill, a gridlock of services, much like what you now see in the public clinics or emergency rooms in city hospitals?

To fundamentally alter the way that health care is provided in the US requires a new alliance

between consumers, nurses, and other health care providers. As health care consumers, we must be active partners in our health care and assume responsibility for staying well. As nurses we must

become a strong, unified voice demanding the power to control how we work, with the resources to

allow that to happen.

As the AIDS continues to reach into every corner of the globe and throughout the land, it will

change the means and the way that we provide health-care. The question remains -- Are we willing to change, grow, and adapt along with it or will we be dragged along, screaming and kicking, clinging to our obsolete notions of health care?

22 February

Dr. Abdull, the new resident, asks “Who is that woman? Doesn’t she have anything to do than to

bother the staff?” He was referring to Sandy. She made rounds with the interns and was making a

nuisance of herself, telling one intern he reminds her of her nephew and how she used to beat him up, and that this place was a mess until she came along. The interns try to politely tell her to leave; she

doesn’t. She comes into the doctor’s lounge and tells them what should be in there and not. Abdull finally tells her to get out.

This morning, Sandy is standing in the hallway yelling at Joey, telling him that it’s because of

him that all these people will come down with AIDS.

He goes back to his room crying, saying, “She has no right to try and make me feel guilty, I

already feel bad enough how life has worked out without someone reminding me.”

He is sobbing,”I want a life that works!”

Jack is a new patient, a thirty-four year old long haired white junkie. He tells me his story with

the rapid fire commotion of the coked: “Wife murdered - no, not exactly murdered - coked to death -

not coke - but endocarditis - fix it - yeah, 27 grand - fix the heart - then more coke - blew it out - big

holes in the heart - like the Lincoln tunnel - then was I angry - went to the dealers house- I knew he was

responsible. Responsible. Very responsible for what happened. I took him out - Louisville Slugger - he

lost an eye - an eye for a heart - then bang - attempted murder charges - there was no attempt - if I was

attempting it he would have been dead - when I do things I do them right - right - then four and a half

years in jail - I sued the jail - they gave me too much time - now I have money - but no place to stay - no

welfare - that was cut off two weeks ago - I was supposed to be in Florida last week, the day I got out other people wouldn’t let me get my clothes - what am I supposed to do? - I’m a friend of Joey I bring

him some cigarettes - then he accuses me of ripping him off - hey, been great talking - the things that

have happened to me - you wouldn’t believe - had a house that was sold off - then the judge gave it

away - can you figure it - the landlord is going to throw me out - got to go.”

Whoa! Is it only the coke ? Or is it a personality disorder? What causes a soul to be fried and

served up like a plate of onion rings?

There are holes in the souls of so many I’ve known. I once was walking through the streets of

Boston after a long weekend workshop, my insight very focused, and started to cry. I did not see the

proud facade of people, I saw a world of the walking wounded. If each soul was revealed, it would be like a field hospital in Hue in the spring of ‘68. Many wounded people. That is what I see here on

Paradise Alley, the soul wounded. How do we speak to those wounds? Do we rub salt and cayenne into the red open welts? Unintentionally, we do. And sometimes, in our child-like rages, we hurt others before they hurt us.

Are we the wounded treating the wounded?

23 February

For a long time I thought AIDS was something distant from me. Though I have gay friends, and

am well aware of the Gay Community, this was somehow separate from me. But AIDS, is now no longer a disease of one individual’s body, but part of our culture and collective unconscious. A

generation’s attitudes are being shaped by this plague. Though it may never overtly intrude on

someone’s life, the presence of it hangs in the background of even the most casual of encounters. We

meet someone, we’re attracted, and maybe make love. Does she or he have it? If not AIDS, then

hepatitis, herpes, penicillin resistant syphilis, pan resistant TB? Suddenly, the casual and splendid

occasion to meet someone and make love is reduced to an equation of risk factors.

Despite working with the dying for years, death was always a few inches away from me as a

person. Now it is up front, staring me in my face, it doesn’t laugh or taunt, it’s just there, watching like the hawk hidden in a mountain crevice, watching for each break in the terrain, each moment of

opportunity, the break in mortality. Why does the break occur? Two people could be sick with the

same identical thing, but one dies and the other stays well. What keeps a person alive? What keeps a

soul attached to a body long after reason says it should end? One person is sick for months or longer, and fights every inch of the way, and another leaves after the first opportunistic infection. Why? COUNSELING:

I’m learning to change my counseling style and reveal more of who I am. Another way is

needed, with a style which gets right to the heart of the matter. The tendency too often is to set

yourself apart, at a safe professional distance, interested, but detached. I don’t always push and reach when I can. My baggage? I don’t like heavy emotional scenes. Isn’t that a riot? Someone who works

with terminal patients doesn’t like heavy emotional scenes? We do teach what we most need to learn.

AIDS is challenging all HCWs to quickly adapt to a rapidly changing situation. Where my

counseling with people with terminal cancer had a certain patter and format, AIDS requires a different set of skills. Many times I’m not counseling people who are going to be dying in a month or two, but

somewhere down the line; in some cases, “the wall” will be pushed back two or three years. I rarely counsel the dying, but those who are living and working with AIDS, who need to make some kind of peace with themselves, their lives, and the disease.

I’m dissatisfied with my counseling. I need to push back the wall which separates me from my

clients, not in my usual head forward ramming through the wall style, but in a way which leaves me more powerful, tender, and attentive.

When people reach Paradise Alley, time, our only commodity, is placed squarely on a small

table, and the room for negotiation is limited.

24 February

I walk down the hall after a few days off and feel as if I’m a stranger, a voyeur to a world of

private suffering and pain.

As I reach the end of the hall, I look to the side and recognize the brown blanket with the little

teddy bears on it, but don’t want to believe that Michael, the nurse, is back so soon. He left about a

week and a half ago, the day I was off, but before that as he was getting better he was curt, even rude.

Melvin is talking to me yesterday about how AIDS is an opportunity. Oh, yeah? We spent

about twenty minutes talking about this. He was admitted because he had shot-up with bad dope. I

don’t understand why someone with end-stage AIDS is still shooting up? His anxiety, descriptions of

the past, and how he came here to the Alley rings a little hollow. “I had a good life, did a little drugs, but not a lot. Then once I was playing around, my wife was away, and things happen. It was that girl, if it wasn’t for her I wouldn’t be here. As to drugs, I was clean for years and, okay so I admit it, maybe I

shouldn’t have been playing around.” The most interesting piece of his story was that he worked here

in this hospital, and was one of the people who built this ward. Did he ever imagine he would be here?

I am continually learning about myself and my role in this play. Chairman Mao sent the

intellectuals off to the fields. I am hoeing the fields of my soul, learning to work with my indifferent

nature, and learning the patience that comes from watching the fields change from season to season.

28 February

A Vile Mood This Morning:

I feel awful down to the bottom of my boots. I want to go away by myself, someplace far in the

woods away from people. Many times I find myself angry with the things that don’t change: the apathy and indifference of my colleagues, the men who have given up the fight, and the patients who don’t

wear their TB mask. I’m fed up with the whole lot of it today. I want to be like Nero sitting on a hill-top,

play my electric guitar, and wail while the Plague rages in the valley below. I need laughter, love, and a certain kind of elusive quietude.

Michael is in constant pain for several days, and the physicians are running a battery of tests to

figure out why. Then he has to wait for over an hour this morning for a nurse to get off her fat bum and give him his pain shot. So often we treat these guys like animals in a cage who are watered and fed according to the nurse’s schedules.

I am in a vile mood this morning.

Melvin’s young, attractive wife comes to visit him and there is a sadness about her. I

understand why -- Stand by your man, even though there is a world of reasons to leave.

Joey is impossible to deal with: his face mask is drooping off his chin and he is a walking

invitation for TB. He leaves through the doors of the ward, looks around, and lights up a cigarette as he makes his way down to the second floor smoking area.

Jean Pierre asks, “How are you?”

I stop and think about how I’m feeling. I take too long to answer him and he squirms, impatient

for a quick pat answer. I tell him, “I’m frustrated as hell and pissed off.” He looks at me as if I just told

him he was naked.

For the next few weeks after that he doesn’t ask me how I am. He simply says, “Good morning.”

John, the psychologist, tells me the story of when Jean Pierre had group therapy and one guy

was angry and acting out. Jean Pierre had a fit. He didn’t want people discharging in his counseling group, he wanted a tea party kind of group, so he told him to get out. He also threw Joey out of the group for nodding off; actually, he was more upset that he was drooling.

Chester came walks in to the ward with a stout wooden cane. A month ago weeks ago he look

like he was a foot away from death; today, he’s talking, smiling, and joking. It’s a pleasure to see him.

I’m not a fool, I see the death shadow around him. He is a tough man with a lot of guts. He doesn’t look behind him. There ain’t a lot there. He keeps moving one step at a time, leaning on his cane. Each step he makes is an affirmation to me. Maybe something I said or did for him helped him to get better, or maybe it was his own incredible strength of heart, maybe a bit of both. It felt good to see him.

Despite my gladness to see him, whenever I see one of the guys come back to the Alley, even if

it’s just to say hello, there is a part of me that wants to scream, “Run ! Get the Hell out of here! Don’t come back! Anyplace but here!”

I look to the river outside the window, and it moves at a glacial speed. I am consumed with my

own anger and unhappiness today, too much to be of much help to anybody. Michael and I talk

somewhat, but superficially. He is getting ready to die and all I can focus on is how pissed off I am at everything.

The Buddha said, “When hungry eat, when tired sleep...”. And so by extension: When angry

scream?

The lesson that have been presented to me are many. I need to be attentive to my needs and

understand my anger. The slow roll of the river is the kind of patience needed when facing the tidal wave roll of this plague which threatens to drown us.

February 29

Almost two months since I began working at the Alley. Yesterday, I finished up three days on

the ward and it felt like more than a full week of work.

I don’t want to write these thoughts down, don’t want to think of AIDS, or anything; instead,

something simple like the laundry, painting, or taking a nap. I’m facing my resistance and watching my

desire to escape from the Alley. Is it the same desire the men on the Alley have, the need to escape from

the disease?

Rita, the nurse, makes me laugh, sometimes she walks around going “broooom brooom” like a

motorcycle, sometimes like a Harley or a Honda 250, or sometimes whistling Mickey Mouse songs, or bird noises. She reminds me of the character in the Isabelle Allendale’s House of Spirits.

I couldn’t believe Michael was back so soon. He said, “I needed to get out for a week to get my

finances in order, some papers signed, my insurance transferred and now that it’s done, it’s time.”

Michael is thirty-six, the DNR papers are signed and he says he is at peace. “Yes, it’s time to leave,” he

says with a quiet resolve.

CHOICES:

A friend of mine spoke with me about AZT toxicity. It’s true that AZT interferes with the

cellular replication of a virus, and with your “normal” cellular metabolism. The question is repeated at

least once a day, “How bad is AZT or how bad is this medication?”

For most people, it’s the only game in town right now; for some it’s the best drug, and for

others its poison.

The conflicting facts and information come so rapidly and with such a diversity of views, it’s

hard to sort out which is the best course of treatment. Bactrim as prophylaxis against PCP? Seems to have worked for some, however, there is the logical conclusion that in time it will also weaken your immune response. If I had to make the choice, I don’t know if I would choose the AZT, Bactrim or whatever else. Each person needs to make that choice.

One major piece of the puzzle which hasn’t been answered or focused enough on is - nutrition.

The food is abysmal here: heavy with meats and greasy, with over-boiled and highly salted vegetables, sweets, and no fresh fruits. Though AIDS is characterized as “a disease of wasting,” there is little

strategizing to meet the complex and changing dietary needs of the patients, nor is there much attention paid to the wealth of new research on the positive benefits of dietary change.

The kind of therapeutic community needed to treat AIDS must include the two major

components which are most overlooked by traditional medicine: Psychological/Emotional/ Spiritual well-being, and good nutrition.

Friday was very peaceful, Sandy was gone for two days; consequently, the Alley was quieter

and more orderly.

Dale is barely conscious from the toxoplasmosis, a protozoan that causes brain lesions, his

thinking and movements are very muddy, and his conversation is down to a word or two, “Smoke”. His eyes are brown, murky, with lots of emotions that hang there like an unfallen teardrop. There are

many tears in his eyes, but I’ve never seen him cry, and he doesn’t appear to suffer. I can’t penetrate his silence, nor do I try very hard with him: I don’t have the energy this week. As much as I’ve tried to muster the very focused attention I need, I can’t.

Franky, day after day of just grunting hello, all of a sudden comes around and brings a few

sentences together. Then I realize we’re finally having a conversation, he talks about his disease and

wants to know about his pills. He writes the information down in his notebook. That is the kind of

response I need. Many times I explain what the medications are and then am asked the same questions the following day.

Carlos, who despite having AIDS, is an active addict. I can’t figure it out with him, as bright as

he is, he’s content spending the day in front of the tube watching cartoons. He said, “When I’m at home I like getting up in the morning, make some coffee, and watch the ‘toons.”

“Is there anything else you like to do?”

“No, not really. Sometimes I go out for a walk.”

Here is a man who can still get up and walk around, is fairly healthy despite having AIDS, and

all he wants to do is to veg out. I don’t get it. Maybe it’s my compulsive gringo Type A personality,

however, I can’t make a wit of sense about this passivity. Not all addicts are like that, some suddenly

face the Quixote mirror of truth, and like Marco, clean up their act. I acknowledge my biases, I cannot see the value in addiction nor see it as being any kind of meaningful response to life.

Sometimes, working here feels like I’m pushing a wheelbarrow full of sand uphill, and on the

other side, for a brief moment, I’m gliding down. When I am working with someone like Franky, who is at least making the effort and being an active participant in his care, then I feel as if my efforts are

worthwhile. As importantly, my reservations and misgivings are liberated, and my anger and doubt

dissipated.

Frozen emotions are one of the things on my mind, emotions which should be most open to

transformation and healing are frozen solid. Maybe that’s what drug addiction is all about, the inability to express emotions/pain, because as soon as any emotion/pain is felt, bang, there is the fix for it. No emotions/pain, only the isolation of frozen emotions where pleasure can be perceived and pain masked.

At the end of a life you want more than anything to say that your life did indeed make a

difference. Too many times it is hard to find or even offer that assurance. Is the quietness I often sense here, the pause and search for that assurance?

Raul has been here for a few days, he irks me. He is manipulative, and used to being waited on

hand and foot by his family. It’s good that I see what is annoying and understanding why I’m getting aggravated. His attitude is, “I’ll get my needs met at any cost, no matter who or what is in my way.”

Katy, the nurse, called it the “Drug-Kind-Syndrome.”

We do get pissed off and angry at those who are sick, it comes with the turf. What I need to see

is how my buttons get pushed. Somedays, like today, I hit all the lights on the pinball machines. The

only thing you can do on days like this is take a deep breath, step back, and ask for a little support from

your colleagues. Though I don’t yet have that support from my colleagues, it is as critical as the walls of

the building. Because I don’t have the kind of support I need at work, I make sure that I get it outside;

for me this support comes in several parts: a fantastic, supportive partner, an excellent network of cocounselors, and my Quaker community. Having consistent nurturing support is imperative and the major cornerstone in surviving as a health care worker.

I talk to Britt, for a week he has been smoldering and furious. His flushed dark skin and finely

chiseled features are like a sculpture and reveals few clues. Gradually, he has become quieter and more withdrawn, and today marks the second month he has been here. Britt and I talk. Very slowly. Glacial.

I can’t really take the long silences, I am impatient and want to get to the heart of the matter. He says that there are few people he can trust, “If they knew about the AIDS they wouldn’t be my friends.”

“Is there a friend you’ve talked to about AIDS?”

“Just one.”

“And?”

“He knows.”

We talk for about twenty-five minutes, with about ten minutes of silences and long pauses

thrown in. Another patient calls, and I plan to come back, but I can’t until the end of the day, and then he’s asleep.

Raphael Jones came by the other day, skinny, but looking stronger, in fact he looks taller. He

says hello and gives me a hug. He still has the shadow, maybe I need to get my eye-sight checked and

get some eye-drops to wash away the shadows I see around so many of the guys. Would I be less

inclined to crying? I still cry a lot these days, more than I want to, even now as I write about it, I feel the tears coming to my eyes. Too many tears, too much pain and mysteries.

Each junkie has walked along that lie of addiction so many times, now each lie and shadow

casts its own shadows, with its own long history of pain that is never healed. With addiction, no matter how many drugs you take, you still have the pain, but it isn’t lessened, it’s just dulled. Heroin, cocaine, none of it takes away the pain, it just hides it for awhile or gives it a gloss, but it’s still there.

Do I dull my pain in anger and self-righteousness? Yes.

AIDS this WALL. It is no metaphor, no literary sleight of hand: a wall. One side is the green

lush playing fields and on the other side ... I don’t know what’s on the other side. Maybe nothing. I’d

love to see the Pope’s face at that moment if this was true. Nothing there, just the huge black void of

infinity staring back into your face. Surprise! No angels. No party. Annihilation. The great cosmic

vacuum cleaner which sucks up all the debris of consciousness and sucks them right up into the pit.

Once the bag is full is it shaken up and tossed out, or is it recycled?

Willy Sanford asked me about the other side and I lied to him. I told him what he wanted to

hear, when you die it is very peaceful. I don’t know if it made him feel any better, but I felt better for

awhile. I work with the guys as they make their peace and say their prayers from whatever scraps of hope they can find. The best to hope for is that at the end it is peaceful and without pain.

In retrospect I don’t think I lied to Charlie, though I felt I had. At the moment of death it

appears there is a great peacefulness, as if the body and spirit had been tangled up in some huge ball of rubber bands that had been twisted and with a sudden slice all the pieces were released.

Dying isn’t something you start working on at the point of death, it is something you actively

work through during your entire life. The conscious and full living of your life is the best preparation

for death. Death is always as close as the next breath, no matter who you are or how safe you think you are.

Some months ago I was contacted by a friend’s family to take care of their brother who was

dying of AIDS. They didn’t want me for my “skilled and compassionate nursing care” - they wanted to know if I knew how to access the calculated dosage of IV morphine and how much morphine it would take to kill someone. That is pretty direct. Yes, I did know how much, and yes I knew how to put someone “asleep” (as they put it). Would I do it? No, it wasn’t my place.

I spent several weeks working with him, his most important concern was that he had the

choice of ending his suffering. His partner had died in the same apartment a year ago. He said, “I knew last year when I was taking care of Jim that this very well could be me.” He died surrounded by his friends and family. Thirty-eight years old.

I’ve been working on developing relationships with my colleagues and today I took the time to

have coffee with Katy and Rita. Even after months of working here I still feel on the outside looking in.

I’m sure it says a lot more about me, than it does about them. It’s part of my isolation patterns. My

preference is to spend the time working with the patients. I know they appreciate it, they’ve said so in

many different ways, and while I value their gratefulness, I need to keep my ego out of the way.

Ego and co-dependency are the red-flags that anyone working with the sick or dying needs to

keep squarely in front of their eyes. Are you getting your needs for love, affection, and self-esteem from

your patients/ clients? l March

MICHAEL, THE ART OF NURSING, & POTHOLES:

The Alley is far away on this Sunday, but not really in mind. I see this journal pointing to a time

when I can look back and see the beginning and end of this Plague: Soon, please, soon.

Michael asked me, “Will you be helping me this morning?”

I take care of the ones who are the least sick and get them set, then I prepare for Michael,

emotionally, and the things that I will need for him: linen and potions, the air mattress and so forth.

There are years of experience and insight that has gone into learning how to do these things, like caring for a patient, which are at the surface so simple. In traditional Japanese pottery, the potter doesn’t

make many different kinds of pots, he makes one kind, again and again, maybe one is the masterpiece.

But the goal isn’t the masterpiece, the goal is the act of creation.

In nursing we are losing “the art” to this world of science, in our haste to make this trade a

profession. The least prestigious jobs are the ones involved in direct care of the patient, but if you

handle paper and other such “totems” you must be a professional. You see the same kind of working class mentality around the potholes in the city.

There are ten guys or so around a little pothole in the middle of the highway, the highway is

closed down, there are four or five pot-bellied guys drinking coffee, at least two of them wearing white

shirts and ties with at least four unused pens and an extra pair of reading glasses in their left shirt pockets, then there are at least two flag and whistle men/women, two other pot-bellied guys in

dungarees (usually at least one of the guy’s stomach is protruding from his t-shirt) walking around the perimeter of the hole, and then finally there is the one guy with a shovel actually filling in the hole. He usually has the hungry look of someone waiting to get their green-card approved.

So what does nursing and a pot hole repair crew have in common? I think it says it quite tidily.

I enter Michael’s room and open the blinds. I bathe him, place an air mattress on the bed to

prevent bed-sores, and then change the sheets. We talk about what he would like to have happened in

his life. I don’t have a lot to say this morning, the more that I hear from the guys, the more I just want to listen. We spend about forty-five minutes together this morning. After the bathing is done, his swollen feet are massaged, the pressure points to release stress and pain are worked on, and then his back and buttocks are massaged with lotion. I take note of each part of his body, what is reddened or swollen,

the bruises from the lab technicians, and in this clinical inspection I catch myself marveling at what an

amazing thing a body is. Here, without metaphor, is a thing of great beauty before my eyes. I value that perception because I don’t always have the time or the presence of mind to appreciate it.

His external catheter is reapplied, and as I place it on him, I wonder if this gram of latex would

have prevented him from being here. Very likely it would have.

I’m grateful that I had the time to spend with him this morning. As I draw the clean sheets and

blankets over him, he falls asleep.

This morning I realized one of the things that I want to do in the coming years is to create an

“oasis.” I’ve had this vision in my head in a variety of forms, for a number of years, of a place for

healing and renewal. Oasis is someplace warm, Baja California, the Caribbean, or a place by the ocean

where people who are living with AIDS can come and heal.

My partner’s interest is to open a windsurfing and outdoor shop, why not combine the two of

them? The First Holistic Healing Center and Windsurfing Shop? The possibilities are rich. Surf your way to wellness? The first truly Cosmic Surf shop. It would certainly make the Pharaoh’s idea of a solar bark to visit Ra seem a little pale, wouldn’t it?

THE WALL AND THE MIRROR:

If we enter our death fragmented and frightened, it makes a process which is natural and

already difficult enough, even more painful. Our dying is frequently a mirror image of the way that we’ve lived our lives, no more of less extraordinary than anything else in our lives.

Several weeks ago, I was in a counseling session and one of the counselors said, “This is the last

fifteen minutes of your life.” Suddenly, I was face to face with the Wall: My life: My Death. It was very peaceful. I cried. I thought of the people I wanted around, and the kind of music playing -- James

Brown, Bob Marley, and Vivaldi. I wanted to be on a tropical beach surrounded by New England green

forests. The minutes counted down slowly. There was at least twenty books and a few thousands more poems I still wanted to write, however, the sensation was of a deep abiding peace. Maybe in my actual death I’d go out screaming, fighting, cursing and raging. Who knows?

Too often we have the notion that death is like a great big final exam, one where you’ve never

been given instructions and haven’t even taken the course and yet here it is - the final exam. No, not

true, there is lots of practice, as you breathe and experience life as richly and fully as you possibly can, that is the preparation.

3 March

A friend was telling me about her friend, a physician, who died about six months ago. I had

read his obituary in the Times: he was thirty-five, an immunologist, and a nationally known ice skater who had danced with the Toronto Ballet. A life jam packed and complete with achievement. “A

person,” she said, “who people loved to be around. My best memory of him was when we were at Yale

in l972 driving along in downtown New Haven in a red sports car with the top down, and singing at the top of our lungs and clapping along to the song “Cecilia”.”

5 March

Raul says, “I don’t know what these medications are and they’re making me sick.” I write down

his medications and explain to him what they do. Because there are too many pills, I crush them in

apple-sauce, like I would for the elderly. He finds it a little easier to swallow. “I’m tired by all of this.

Tired of the pills, being sick, and so fucking tired of being here.”

He knows he is dying and that these pills only make a very small difference. Too often I wish

there was a pill to give him so that he will go to sleep and never wake up. A pill to cut through this waiting for death.

One of the projects that I’ve wanted to do is to make an information sheet of medications and

drugs that lists what they do and possible side effects. Also, I’ve been wanting to write an information

sheet on things the guys can do to strengthen themselves: Vitamin therapy and juicing (the kind from vegetables, not from thunder-bird), exercise, bio-feedback etc.. Very little patient education is

provided. We rarely empower the guys to be active agents in their recovery, we seem to foster dependence.

Willy J., is a forty-two year old man who’s been on the floor for two days and is taking

percocets like M&M’s, two tablets every three hours. I suggest cutting back so he isn’t so stoned. Katy

said, “He’s a junkie, don’t bother trying to change him.” That is becoming an all too familiar phrase

around here, “He’s a junkie don’t bother with him.”

Sandy is funny sometimes, perhaps not as much as she realizes. When she does something for

a patient, she does it in the middle of the hallway. Last week when she cut Joey’s hair, which was a nice enough thing, she didn’t do it in the shower-room where everybody else has their hair cut, but right in

front of the main desk, where all the hallways intersect. I remember her doing this several months ago with Dyson and her “large show of kindness.” I’m grateful that she’s rarely here, it makes it much

easier to work.

EMOTIONAL STEW:

It is amazing how much ‘stuff’ (the unresolved emotional issues from our childhood) is

reactivated. In our caring work do we see this pattern of our childhood emerging? Am I replaying a

tape recording from thirty years ago? In each person there is one tape which continues to play over

and over again, a tape of unerased anger, shame, humiliation, unmet needs, on top of all the distress in the intervening years, and so by the time someone is interacting with you -- Are you two having a real conversation or is it two children’s unmet and frustrated needs from thirty years ago having an

interaction? The tape loop I imagine probably sounds like the Beatle’s White Album where there are

endless playovers. The DJs use to try and decode what were the hidden messages. I’d certainly like to

decode more than a few of my messages and discover how many of my old tracks are playing.

Listen to HCWs and the way we talk to patients: “You can’t have it now, you have to wait. There

are other people who are sicker than you are, you’ll have to wait. You’re always making demands on

my time. What do you think you are - the only one around here? “

This work with AIDS brings me face to face with all of my emotional issues, and compels me to

look at my relationship with people, including my clients and colleagues.

Time for the mines. My friend from Quaker Meeting, Martha once said, “Paying attention is -

minding the light.” Being hard of hearing I heard her originally say, “Mining the light.”

What does AIDS mean to us as a society?

6 March

It is at the end of the day and I don’t have room for more emotions, nor do I want to sit here

and write this entry. I am fried by the running from morning till night and am left with a lot of

incomplete and partially used feelings. No matter how much I try to meet the needs of these guys it will always fall short. Their emotional needs are vast, and my energy is finite. No matter how much

you may try to fill that void - you can’t.

I spent about an hour and a half with Vasquez doing his care and talking to him a little. He is in

the last stages of renal failure and cirrhosis of the liver. I observe my reluctance to offer the same kind of care and attention that I would to Michael. Vasquez is a poor Puerto Rican alcoholic, Michael is a

middle class white professional: does the quality of my care differ? I’d like to believe that it doesn’t,

but I notice the subtle biases creeping in. Having been in situations where it is reversed, when I’m

working with a poor white alcoholic and a well-educated gay Puerto Rican, my inclination in that case

would be to spend more time with the gay Puerto Rican. It is imperative for me to see these biases and

make adjustments accordingly; so often our inclination is to go on automatic pilot. But at the end of the

day I’m exhausted. My main concern was to have enough energy to make it through the day, and hope that is enough.

Joe Johnson, an old black man, maybe late sixties, seems like he could have been a blues singer,

he has that well-lived look about him. He needs a mirror and a special kind of shaving powder, other

guys need cigarettes, and during my lunch break I’ll stop at the local pharmacy for them. When I step

back out into the “outside world” it feels even more dream like, removed from the uniform sterility of

the ward. When I get back, Johnson is grinning from ear to ear and delighted at what I brought him. An hour later, he comes back washed up, with his head freshly shaved, and he has a bit of a glow about him. Sometimes the small things count for so much.

7 March

The AIDS work and this journal mirrors my relationship with myself and others around me,

even my cat, who wants attention now. He is very direct in communicating his needs. His name is

Tiger: he is fairly quiet, likes affection, doesn’t eat too much, and is almost always able to find the right

place to go to the bathroom. That would make a good personal column, I will ask him if he is interested.

He reminds me that his love life has been a little less than exciting since he was - ahem, shall we say,

neutered.

“Tiger, would you instead care for a platonic relationship?”

He says “I wouldn’t consider it - besides everyone knows Plato was a calico.”

A cat would help the ward: he loves to find a warm person next to and snuggle, could keep the

mice population down, and he often is fairly unobtrusive.

WHOSE PAIN?

Michael is in pain, three times he called for medication, I don’t have the medication keys or else

I would give it to him. The medication nurse, Lana, is playing some kind of game. Why keep them in pain?

Lana said, “I won’t get the medicine now, because I am too busy.”

“If you’re too busy, I’ll get him a shot.”

“But you’re not the medication nurse today. He can wait.”

“How do you know he can wait if you haven’t seen him?!”

She wants that inch of power and control. Finally, she gets up and gives him his pain shot.

I step into his room. It is him and me. His room feels like a cave, dark and secluded, the blinds

are drawn because his eyes are sensitive to light. I close the door when I work with him, and I feel as if I have stepped on to some kind of small island. There, in the middle of the island, which is Paradise

Alley, is another island which is his room, and then the space which is him and me. For the time we are

together we are alone, intimate in a way that lovers rarely find.

We don’t have time for the walls which are clearly there. We talk, he is in pain, oozing green

diarrhea, and nauseous most of the time.

There is nothing pretty or heroic about dying from AIDS. It is being in pain, uncomfortable,

frightened, alone, knowing you’re going to die and not knowing when. It is seeing the short time that

you’ve been on this planet and realize you won’t have the time to do the things that you’ve always

wanted to. The commodity which we all think is bottomless, time, has the queer sensation of being at the very end, like sucking the last succulent drops of a cold chocolate malt through a very narrow straw.

Michael and I talk less, we get impatient with one other, he mumbles and I can barely

understand him. He’s been a nurse for fifteen years, he should be making it easier, instead, I do

something and he tells me it’s not the way he wants it. He’s frustrated. I can’t always sense what he

wants, I’m annoyed, and tell him we need to work together. He can’t. He is doing the best he can, but he is too weak and dehydrated to do more than complain. I’m frustrated and tell him, “Michael, you know, you’re getting to be a pain in the ass this morning.” He looks at me and I see him laugh, just a little, we

take a break from what we’re doing. We move a little slower. What would take a short while to change

the bed, exercising his feet and legs, massage his back, and shave him seems to take hours. We struggle through the very simple things we do together. I discover the bit of patience that I thought I had lost

hours ago, he relaxes a little. His body is swollen and frequently painful to the touch. It is just him and me in this darkened room, removed from the commotion on the floor. It is the two of us working

together very intimately, in the best way that we can. At last it is finished. The sheets are changed, mouthcare done, his skin massaged, and his legs are exercised and foot care given. Though he may

never walk more than a few feet from his bed, foot care and mild range of motion will help ease his pain.

There isn’t enough help on the floor to devote the attention that is really needed to the sickest

people, they’ve allotted more staff for IVs and paper work, but not enough for direct patient care.

I usually work straight through the day, but now I need to stop more frequently because of my

knees. It’s amazing how the body tells you what you need. Too bad when my soul is in pain, I don’t

pause and take time to heal that as well. We are too accustomed to working and living with our spirits in chronic pain.

Intuitively, I know what emotions feel like, but I’m too numb with pain to feel more than a

small part of that emotion. It feels like I’m looking through a window with myself reflected in the glass,

on the other side is the emotion which is genuinely there. I imagine the real emotion would be like seeing a wild, beautiful orchid lushly growing in the rich black earth, set like a jewel in the garden.

Around it are the walls to the garden, above it a crisp blue sky. Yet, I’m sitting inside, separated by the glass and the prison bars of my room. The room is crooked with one side sloping down, light oak

floors, a twelve foot high ceiling and bare white walls. I sit inside this room and watch the orchid grow in the early Spring. I am like the color blind trying to describe the difference between green and red.

Why do I so frequently only choose to see the brown?

How does my work with the dying help me to see the colors of my emotions? In working with

Michael today, I saw a shade of color I did not know existed before, and discovered a gram more of love

and patience. In doing this work I’m rarely conscious that my awareness is growing, but afterwards as I

pause and write, I see the subtle changes.

This journal is helping me to understand and see these emotions, which are as vivid as a fresh

painted red barn, and as broad as the side of one. Damn! Wouldn’t you know it, I don’t see it. Wham! I fly right into that barn and disintegrate.

I’m tired. My hands ache from typing.

Despite the Grand Central Station flow of people who come through Paradise Alley, there are

only a few I write about: Joey, Chester, Michael, Wilson, Stanford, etc... There are more, but I’m only able to focus on a few.

I make it my business to spend time with every new guy who comes in; fortunately, there are

only sixteen at a time. Whether they are my patient or not, I want them to know who I am.

Occasionally, I’m surprised when I tell someone, who I think is “out to lunch,” my name and he

remembers it. Something as apparently insignificant as introducing yourself and calling the patient by their name begins to break the spell of isolation.

Am I a fanatic? I wonder sometimes. I’m absolutely unyielding when it comes to insisting on

top-quality care, or as top quality as I can muster. No one waits more than five minutes for a response to a call light, pain medications are given out within fifteen minutes of request, and even the most

difficult of patients are treated with respect and compassion. It’s pretty simple, but few hospitals make

the genuine commitment, both in terms of personnel and institutional philosophy, to make that

happen.

This kind of client focused care can only happen unless the institution has made that

commitment. Many hospitals verbalize it, few make the commitment to ensure it happens. Are they are too busy pushing paper? Too busy with everything but healing?

Sandy says, “If you think patient care is bad here, wait till you go to l9 West, patient care there

is non-existent.”

I see Dale’s mother coming into the hospital. There is something about black women of her

generation that I so very much admire. There is an incredible dignity of spirit in these women who faithfully visit and care for their sons. They have a spirit which is strong and focused. But if I knew them well, would I see something else? Anger? Frustration ?

I watch my walls come into play as I watched Pablo, a homeless, alcoholic Puerto Rican dying

from cirrhosis of the liver and AIDS. I see my reluctance to work with him and then begin to give him his morning care. I wash his swollen belly and his legs, that look like two mottled piano legs with

stumps at the bottom. He tries to talk, but because he has no teeth and the television is on, I can’t hear

him. I turn the t.v. off and he says, “When I get better and get out of here I want to buy you and the

other nurses a present for what you’ve done for me.”

“Pablo the best present you can give me is that you get stronger and get out of here.”

That felt a little too close for me, my last remnant traces of professional distance seems to have

flown out the window. Sometimes I’m surprised by my comments to the guys on the ward. As I

continue to work and rediscover parts of my emotional and spiritual terrain, terrain which I thought

was long abandoned and barren, I discover it is fertile and vibrant. Not understanding many things of

the earth, I look at a winter meadow and only see its barrenness, I wish that I could see and feel the life

growing beneath the sleeping black frosted blanket of the earth. When will the Spring arrive? How can I see the real person hidden behind the shell of AIDS?

I see the trees with their nascent timid buds, and cheer on the Spring. There should be five

seasons, and the one between Winter and Spring should be called, Hope. The season between AIDS and a cure is the season of hope.

This morning I am at peace, there is a calm in the simple things, making a bed neatly and easily

without thought, it is a slow meditation. I am away from the other nurses and staff. My mind is clear of distractions. One of the advantages of the nursing staff avoiding the patients is that they don’t like to

come down to the rooms where the patients are unless they have to. I work alone for awhile.

Britt sits inside his room, reluctant to come out, and speaks less and less. It is part of the

disease process, the brain lesions are growing and affecting more and more of his speech. Over the

past two months he’s become aphasic, he cannot find the word to match the thought. “Get the pen,” is

instead, “Give me the cat.” He remembers me, but not my name. This morning, I tried to play cards with him and it was too tiring.

His family came this week, to take him home to Florida, and though he doesn’t want to go

there, at least there is a family who will care for him.

His isolation frees me. Curious isn’t it? It’s like talking to a man inside a prison and, in a

moment, you cherish freedom like you’ve never cherished it before. My isolation and glacier of frozen emotions are breaking free as well. The glacier disintegrates in the spring thaw, and become serene

islands drifting with the current.

Gradually, Britt’s isolation will overtake him, the brain lesions will eat more and more of his

brain, until even the ability to breathe is gone. Another life will become a calm, serene island drifting with the current, the way that death from intravenous morphine comes about: Morpheus the god of sleep is summoned.

There are several gods who make for a life: the one who makes the thread, one who weaves it,

and the last who cuts it, Parcea the god who cuts life short. I prefer Morpheus and the dreams of a death which is peaceful and serene.

There is a moment of calm this morning. These emotions are regurgitated then digested again;

the bile, bitter and vain.

Lunch time, I’m out on the streets, I enter the other world, the world outside the Alley, as

distinct as one life from the next. I feel the tears forming in my eyes, I don’t know why, maybe the

pollution. (Good excuse.) Three blocks down there is a little bagel shop where I stop for coffee. A little girl is at the table next to me, Lydia is about two and a half years old, playing with a half naked doll.

Lydia has wheat and corn husk colored golden hair and large deep blue eyes that seem like oversized

buttons on her tiny face. She will leave a trail of broken hearts in her life and many will fall in love with her. Will she keep her innocence? How do any of us keep any part of it?

I’ve never understood why we relinquish innocence for knowing. Lydia helps me to focus on

playing, we flirt and talk, she tells me her name and what she is eating. I like that. Can I take a piece of that innocence with me back to the Alley? Without metaphor, it would be a brilliant candle in the darkened spaces.

Grey sky, spirits sometimes feels that way. Sunlight comes, my spirits rise, I am like a boat that

runs too easily with the tide.

8 March

There are several new patients on the ward: one, a black man around sixty-two,

incongruously named Luigi Figarroa, he was too sick for me to ask him how he got that name. The

night crew tied him in bed because he was disoriented. His pajamas are covered in shit and nobody had the decency to change him. Apparently, they found it more convenient to tie him in bed and let him defecate in his pajamas than spend the time to get him up and take him to the bathroom.

I don’t even bother telling Sandy because her response would invariably be, “Well, no one else

has a problem with him being incontinent - Why do you?”. I take him to the showers and help him get

dressed. Clean and shaven, Luigi looks much better, however, he’s dehydrated. He asked, “Why do

they tie me down like I’m some kind of animal?” I look into his dark innocent eyes and I’m stuck. My sure-fire one answer that covers all bases, my band-aid response, which is the stock and trade of

HCWs, doesn’t come. I say simply, “I’m sorry, I don’t know they the left you that way.”

That afternoon an anonymous phone call was placed to the hospital administrator by an irate

friend of his. People from the administration took their heads out of the sand and visited. Occasionally, in dealing with these situations, the indirect and subtle maneuvers is the best way to achieve results.

Sandy is standing by the front-desk talking to Joey, the one she screamed at and humiliated in

front of everybody last week, and said, “Now you know Joey, I treat you the best, don’t I.” The honey

dripping from her voice should glue her feet to the ground or, even better, seal her lips together. These very public, grand displays of kindness are nauseating, it is a charade to preserve this little world of hers. A world that is threatening to destroy itself by the very disease it is trying to cure.

Philip, Michael’s lover, and I talk while he is taking a break from washing and bathing him. I

value their intimacy and closeness. We talk about how others in Michael’s traditional Southern family see the stability in their seven year relationship and have begun to question their own. I asked, “Do you think they’re ready for a lifestyle change also?”

He smiles, “I don’t think so.”

Philip cares for Michael, not as a father to a child or brother, but as one wholly compassionate

human being taking care of another in the most personal and intimate way that he possibly can. He is not angered by Michael’s sickness. The irritability, fatigue, and the thousands of things which

separates us from another human being is often absent. I watch the love between them and think of how it must have been when they first met.

They are both very handsome and must have caught each other’s eye immediately: perhaps

they had a drink, exchanged telephone numbers, or made love and woke up together. They traveled to Europe, the Caribbean, and the Mediterranean islands. They drank uzo in Crete, danced naked on the beach and summoned Eros on the white rocks and sands. The love dance is finding the place where you can be free to love completely. Now, that love of two strong handsome men, caressing and

embracing one another, has changed: Philip puts Michael in to the bathtub, places a towel underneath his sore bottom, and washes him slowly -- face, legs, penis, chest, and speaks to him quietly while

bathing. Rarely, have I seen so much love and devotion between two people, as I have from these men.

9 March Philip and Michael come from poor Southern backgrounds. Michael is from a West Virginian

family with ten brothers and sisters, and a father who is emotionally cold and distant. How could he

possibly accept, or even acknowledge, a son who was dying of AIDS? I am a voyeur who wants to peer into the most private drama and understand the distance between father and son.

Michael’s alcoholic father was a man who rarely spoke to his family, and they in turn, kept the

secret and shame well hidden. Dad worked for the Road Department and traveled throughout the

state. When he was at home, he either locked himself into his workshop or retired to his worn orange

chair in the front-room, that throne-like chair with the parameter so clearly defined it could have easily

been a cement highway divider. There was a favorite son cherished above all others, not the first or the last, it was the middle one, the only one who was really spoken to. Michael said, “I couldn’t

understand why it was him, he was dumb and always raising hell on the street; yet, Dad allowed Danny in. I can’t figure it.”

SILENCE IS THE MEMORY OF FATHER:

In many ways the memory of his father is similar to the memory of mine.

As children, we grew up wondering who this man was in our house. We called him Dad, but he

was only real when angered. We walked around him, cautiously. There was the chair that he slept in

and the corner of the house where he watched TV; frequently, there was a wall which surrounded him.

It was like watching a lion in his cage, each child knew the distance to keep, when to come near, when not to. When he was fed and rested, there was a few minutes when he would not devour you with his seething rage. What was the name of the anger and shame he was holding in? As a child I could not

even imagine asking such a question, I could only see the distance between us. There was a moment,

perhaps even tender, every so often when you could speak, but not often. We learned to endure the

silence. He would come home to his “castle,” his wife, his children, and his silence. But I never wanted to give him that silence. I wanted him to be awake, to listen to me. I could not understand why this person who was my father, who I thought in a weird twist of imagining should be loving and kind,

didn’t see me as special and wonderful. I wanted him to love me; yet, he treated us like annoying flies that needed to be swatted away. But does the lie of the child become the lie of the man?

I see my father now, looking much older than he actually is. When we speak there is still a

distance he cannot travel, if I speak of emotions, he changes the subject. Men of my generation now are questioning that world of silence. I am questioning my silence and refuse to accept the lies of my

childhood, because when you accept the lies of a child, you never confront the lies of a man. Two of the lies I will no longer accept are the violence and silence.

The image of my father’s face returns. He is old and will need care soon. Can I hold the hands

which beat me as a child, with the same loving caress that I hold the hands of the dying? Can I wash the

arms that bludgeoned me with compassion? Can I look into his green eyes and see mine as well, or can

I only see the distance between us? In looking at the person who I would find the hardest to care for on his death bed, I see a part of me which clings to my fears: the fear of emotions, the terror of loving, and the almost insurmountable mountain - trust. These are the fears which separates me from myself and

others; the fear which prevents me from being truly intimate with another person.

This AIDS or counseling work is so often confused as the work against “that” out there. It is

not, it is a making whole of ourselves, it is a healing and a growing into a peace with ourselves and our past.

10 March

An announcement came over the P.A. system, “Will the patient Mr. John Jacobs please return to

the Operating Room.” I can imagine this old guy taking one look around as he is wheeled into the OR

and, as the surgeons are getting ready, sneaks off the gurney and crawls across the floor. They turn

around to start ripping out his guts and voila! - like Houdini - he is gone - no smoking gun - just a note

that says, “Thanks just the same.” Maybe he escaped? Score one for the home team, I bet ya’ he took the first bus south and never looked back.

I am waiting for the day when the call comes over the P.A. system that says, “Will the patient

Mr. Smith return to the Morgue.” Can I live long enough to hear that?

MR. JONES:

A woman who claims to be Joey’s sister comes to the ward for a visit. Alcohol and drug

addiction are like a set of red siren lights wailing in the middle of a blackened city night. She is a walking four car collision worth of red lights.

Addiction is a kind of evil spirit that occupies the soul on a rent free basis, you open your

hunger and your pain, attempting to feed it as best you can, and then Mr. Jones skips in, as easy as he pleases. Mr. Jones with his easy answers and instant cures sneaks into every vacant corner of your

being and begins to excavate you; the excavation for his private place is made by clawing and ripping

shreds of meat off your soul. One burnt dream after another is thrown into the fire, one dead hope after another is sacrificed, till there are no more dreams, no more hopes, nothing more to offer him. When there is nothing left to feed or sacrifice, and the hearth is cold and filled with ashes, he escapes. He didn’t pay no rent, he is going to find another soul to occupy. Mr. Jones, he’s in the neighborhood.

I take the blood-pressures on these guys and roll up their sleeves and find many of their arms

are scarred with long track marks, road maps of the highways that Mr. Jones had traveled on.

Luigi, disoriented, had shot-up for the better part of thirty years and despite the depravity from

the years of shooting up, his eyes have the lost look of a child. Weird, I think that I am making it up, like a poetic cliché, but the lost child is still there. I think of the Peter Pan story and the Lost Boys,

consigned to Never-Never Land, children who refuse to grow up. But these are not children, they are

men who made choices, knowingly or otherwise, and as with any choice there comes a time to pay the piper. I can never understand or accept long term drug addiction.

That is the rub - I can’t accept the surrender of the Spirit. Is it easier to let Mr. Jones do the

work? It seems easier, but I can’t believe it is. No.

Next bed over is Jamey Smith, he just lies there sucking up his 60 mgm of methadone, his

percocets, codeine, and whatever other “spice” he is taking. He hardly stirs, he can talk, he is about

thirty-five. He says, “I stopped shooting up five years ago, but doing the methadone since and I’ve been fine.” He is not lying there curled over because of the AIDS, it is making him tired, but like a number of other guys here they’re taking a little something extra, something to keep the glaze on the methadone, the codeine, and percocets. He must have been taking lessons from Joey.

A fly on the wall told me how Joey makes his pocket change: buying and selling in the hospital.

He stands down there on the second floor, with a full blown case of TB, contagious and un-treatable,

without a mask, and makes connections. Part of me wants to be like Sergeant Schultz in the television

program Hogan’s Heroes, “I see nothing, I hear nothing...”. But Joey is standing down there so blatantly selling, it is hard to miss him. There is a blind eye to it, the place is crawling with security people, and yet it is all so quiet. The hospital and staff knows about it, but the place is so bureaucratized that it’s

immobile, it cannot nor does it want to respond to this situation. The city department of Public Health was in several weeks ago and said, “He’s your problem, there is nothing we can do for him.”

I’m angry, my anonymous friend will call OSHA to complain about this. Everyone’s health, my

health, is in jeopardy because this turkey won’t keep his mask on. The newspapers said, two nurses at Bellevue and Lincoln hospital have come down with TB this week. Damn! I have no problem working with AIDS patients, but TB is too easily caught and needs such a long treatment to get rid of it. Every

time I get a cough now, I think that may be it. This place is so careless of the risks it puts its workers in.

And don’t give me that jive of nurses being self-sacrificing, if someone is in to self-sacrificing, don’t do it

in my neighborhood, join a convent or a monastery.

Is addiction the only serenity for some of these guys? The rationale eludes me.

I walk down the hall with my judgments present but on a tenuous leash.

It is so easy to get drawn into the individual tragedy and sucked into that cycle of pain. The

enigma in working with PWAs is to care without getting devoured and to love without getting

destroyed. There is no one easy way to reach the end of the day and not feel as if your soul and entire being is fried. Often the question is not how to make it through the day, but how to survive the hour, that sometimes is the miracle we need. The miracle isn’t that cosmic sleight of hand where the near dead are brought back to walk on the streets once again, but survival. It is learning how not to be diminished by this work, but to be strengthened and nurtured by it.

There is a power in discovering the preciousness of one moment, the inhalation and

exhalation of a breath without pain, but for Pedro Valencia that is a luxury. He is “chained” to his

oxygen tubes and each breath is earned, laboriously. Each time that he is turned on his side it’s painful,

and even bending his legs causes him to howl in pain.

The price of twenty years of shooting up and boozing is a yellow skinned, bloated, wheezing,

five foot nine, one hundred pound man who can’t do much more than lie there and hope the pain lessens.

He has tattoos on his body, a devil on the back that extends from the base of his skull to his

spin, and a homemade tattoo on the shoulder which says, “Carmen.” I ask him, “Who’s Carmen?”. He looks at me very thoughtfully, as if he is trying to remember her, “Just a girl.”

The janitor on the floor, Juan, a stout, strong Puerto-Rican, spends time talking to the patients,

especially the Puerto Ricans. He gets them cold water and, without asking, helps me lift the heavier patients. His kindness, dignity, and humility is a text- book that I can learn a great deal from. How ironic that the janitor is kinder than any five nurses on the floor, myself included.

Philip, Michael’s partner, asked me this morning, “How do you do this work day after day?”

“One step at a time, you just keep moving, I guess.” Perhaps, part of the answer will be written

between these pages.

I’m sitting at the far end of the hall where there are two large chairs next to a large window

with venetian blinds. When I’m not working with the patients, I like to sit here, far from the nurses’

station, removed from the mill of gossip and private intrigues. It feels like a Catholic confessional, one

chair there, and one chair here, but there is no screen in between, only a fake green potted plant filled

with litter and cigarette butts. In this open space, is a time of privacy and intimacy where I can talk to

some of the guys like Jack Carr, who usually stays in his room, except when I’m sitting here. He comes out to look at what’s happening and we talk: nothing big, just shooting the breeze, the casual what’s

happening with life kind of scene, no grand conversations of life and death.

Michael slipped into a near coma like state at the beginning of the week, with that deadly death

mask look, and then over a few days he comes back. Gradually he is becoming more of shadow and ghost, and has lost a little bit more ground. The soul deep weariness is so evident in his face today;

despite this, he told me that he wants his DNR (Do not resuscitate status) removed and ripped up: if he codes out, he wants to be resuscitated. I’m taken off guard, I don’t see the point in him doing that, I’m

angry and then catch myself and see my judgments as a red flag. This decision has nothing to do with

me. I notice where the line of the personal involvement has been crossed again. I didn’t reveal my anger to him, instead I find my balance, my professionalism if you will. My professionalism in this milieu is more like a narrow sand bar in the middle of a changing tide. I make him comfortable: massage him, bring cold water, and so on.

I ask him how did he arrive at that decision, he says “Him.”

“Him?”

“Yeah, Him.” Pointing upwards.

“Oh, Him.”

“Yeah, if He wants me to go then I will. It don’t matter what anyone says, when the time is up I’ll

go, not until then.”

Michael is a nurse who knows what happens when someone is DNR and the barbarity of a

code. Yet, he is finding the will to take it to the limit, far past what the body can stand. It’s simple -- he

wants to live. No matter what the cost, he wants to live.

“I know what my family and Philip have been through, it hasn’t been easy, but I hope they’ll

understand.”

I’m frustrated and so is Philip. We don’t want to see him die, but it seems so pointless and

painful. I don’t agree with him nor do I tell him that. We review the options, he makes his decision and I support it, though I disagree. ll March

Paradise Alley is far away from me now, though not in mind or spirit. I am becoming obsessed

with it, trying to understand it or perhaps, foolishly, trying to make peace with it.

It is early Spring and I’m comforted by its return. As devastating as the epidemic is, it will pass.

Millions will die and history will record it. The face of the individual will fade into the thousand score

tales of faith and courage; perhaps, swallowed by the desire to forget our pain and grief. Kaddish and

prayers will be chanted and we will get on with the business of living. Maybe that is all there is. Maybe, it is the best that we can hope for, to make it from one day to the next. A part of me says there is more.

AIDS how are we made by it?

Pedro Valencia lies in bed too sick to do anything for himself. In the early afternoon his mother

comes in, an elderly stooped over women dressed in black, in her folded hands she carries rosary

beads. Without words, she washes him from top to bottom, massages his arms and legs, and stays with him until the late evening. When she is getting ready to leave he asks her to stay longer. Yet, he knows

that she lives in the South Bronx where the young and old are equal prey in the night. The dark streets offer no refuge or sanctuary. No one will know of her kindness for her son. They will see her only as

someone with a handbag. If not too vicious, they will knock her down and rip out the few dollars from her purse. If vicious, she will be dead. The money is almost always for crack or bags of smack. The

same kinds of addiction her son is dying from: the drugs, the poverty, the alcohol, and the lack of hope.

She stayed a little while longer and left as she came, stooped over with rosaries in hand slowly making her way down the hallway.

WE ARE MIGHTY - WE ARE MANY:

In the Middle Ages when the Black Death came to the cities, the wealthy left for their homes in

the countryside, but the Plague followed them. We can close our doors, our windows, and our hearts.

We can say it only happens out there, it will only happen to “them” it cannot happen here. But the body count keeps growing. Those who have it are not only the sons and daughters from places like

Greenpoint, Red Hook, the dark narrow streets of the South Bronx, and the decayed crumbling buildings of Harlem, but the Plague also arrives on the evening commuter train to Greenwich,

Scarsdale, and invades those fortressed island Shangri-las that we believe are safe. I overheard

someone once say, “It can’t happen here, not here, where we have built such a good life. Yes, we know that Winston died of an illness, strange, they called it a viral illness, a difficult case of pneumonia.”

Good morning, AMERICA! Guess what, it ain’t “a strange viral illness” - it’s AIDS! The same

kind of AIDS that junkies and gays have. The same kind of AIDS that anyone of us can get.

When our neighbors and family also come down with, not just a strange viral pneumonia, but

AIDS, is that when we’ll act? When it is not just “them” but us -- Will we then act?

Will it be like the TB epidemics of the late l800’s, when it came to roost in the homes of the rich,

there was action? Before then, it was called a disease of the poor, “... because they’ve chosen to live in such awful conditions.” The privileged did what they knew how best to do, they built private sanatoriums and retreated.

What will compel society to act and to speak? What is the thing which will end the isolation?

When do we tear down the walls which separate you and me?

Paradise Alley is not the island I thought it was, some isolated and removed group of men

living and dying on an AIDS ward in a large city. No, we are not islands, in our common illness and

struggle for well-being, we are a mighty nation of men, women, and yes, children -- bound together in a common destiny. Though we may die, our legacy will endure: it is found in the will to survive and tell our tales; to speak the truth of who we are as individuals and people; and to claim this fight as our common struggle for dignity and well-being. We will not be lessened in this fight. We will not surrender. We are not islands, but a mighty nation of men, women, and children.

Our fight has just begun.

12 March

Britt sits in his room, wrapped tightly in that cocoon of shame and silence, few words pass

between us, hello and good-by. Maybe his silence is rage, the kind of smoldering angry rage that offers

too few words. I can’t find a way to leap over that wall which separates us.

Later I said to him, “If you feel like talking I’ll be around till four o’clock.” He only nods. I feel

like the miners panning for gold, day after day patiently trying to find the tiniest pieces of insight from the mother lode. I am mining this day.

Joey was talking about getting high. I have not patience for that, but I was too tired to argue, I

only wanted to rest and he was intent on telling me the story about shooting up a gram of coke.

Despite a life ruined by drugs all he could think about was being high, and was it possible to duplicate or exceed the best high he had. The last high was so intense it lead him to almost being pronounced DOA at the ER, but they brought him back. Amazing. I can’t understand him or his addictions.

Julio, the other male nurse, and I are becoming quite chummy. I am glad he is in a relationship,

so that I won’t feel like I’m about to be hit up.

Monogamy and fidelity are new words to me and I think I’d like to continue with that approach

to love. AIDS and STDs should be huge neon signs that glow in front of your eyes when you meet a

person “you’re attracted to.” Usually the only neon sign people usually seem to heed is - “Peel, leap,

and dive.” “Peel, leap, and dive” is very catchy, and deadly.

Julio buys me a coffee and warns me who to watch out for. The gossiping, back-stabbing, and

hidden politics is endemic and makes this environment unsettling. One nurse complained to the

director that I was interfering in the care of her patients because I changed an incontinent patient of

her’s, instead of waiting for her to do it. If it was one incident or one staff person, I would say it is an

interpersonal problem, however, the more I am here the more I realize it’s the poor management and the nursing culture. Yesterday, I fixed up a cart for patient supplies, Nina came on the floor, and

rearranged it. She is on a roll to do patient care better than me. I encourage the competition. Bathe, clean, listen, massage and care for a patient better than I can? Oh, please, go for it! How can I

encourage that? The behavior and nursing care on this AIDS ward rarely comes from any loving or

kind place, but one which is deeply insecure. Nina is also given to chronic complaining and I am getting in the habit of ignoring her.

Joey is in his room talking to himself. No, he is not, he is standing up and giving a lecture to

someone and pointing his finger at them, but he is alone in his room, “I am in pain, but no one pays

attention. I want surgery, I want an X-Ray, I want it now. Why aren’t you paying attention to me? You

have to pay attention to me.” I interrupt his dialogue, he turns to me and laughs a weird little laugh. I

ask him “Who are you talking to?”

He giggles and his eyes roll for a minute, “No one, I think.” And then sits down exhausted.

Tara, the Hindu goddess of compassion, should have a shrine here on the floor. Or is it Freud?

2 March I walk through these halls at seven in the morning; a few men are asleep, others are up

washing, some lying in bed watching t.v. Peaceful. Another couple of guys are sitting in the front room smoking cigarettes. There is little to do here, little to occupy the mind, little to stimulate. Books and

magazines come around on the carts, every so often there are the crafts and moccasins, but the thing which remains is the dead-time. Boredom.

Boredom. I know the easy things to fight the boredom: easy sex, easy drugs, easy things to ease

the pain of being alone. Isolation is the hardest thing to fight in a life. Family and friends should fill the void of loneliness, but it doesn't.

Lionel said, “I was making almost eight hundred dollars a week at JFK, but I lost it.”

I keep hearing that phrase, “I lost it.” I lost something, something along the way to here: wife,

children, home, job. Where do you find them? Do you even try or do you attempt to fill up the blank and empty spaces? Is it religion that fills us, or was Marx right, it’s an opiate?

How do we fill up those empty spaces?

Pieces of conversations heard: “Dead time on the alley, morning comes, your attention is

occupied, diverted, like whirring toys. Life and death. Doctors are there but they don’t answer no

questions, when they do it ain’t in English, and beside they got them foreign accents. Don’t they have to learn English before they work here? Dead time - heavy time - some nurses funny - others serious, only a heart attack could crack their faces - none cute - none pretty. Where are the good looking

women? Where are the people who are supposed to be visiting? My family was supposed to be here yesterday, but they didn't show or call.”

Time! That is it. Time. You can’t go back to work. Television becomes the steady friend and

companion, morning till night the televisions are rarely off. You talk to some of the guys, the company

is appreciated, however, one eye is glued to the tube. The deadly thing is you become accustomed to it all: the television, the silence, and the coma-like existence. We become habituated to the coma like

existence. In a coma, you see and hear, you are part of that life around you, but it is more like walking through a dream and trying to seize something to take it back to the other side.

Guys coming out of their rooms, checking the watches, morning to night sometimes. Jorge,

keeps pacing, smooth Latino lover type, impeccably groomed, reminds me of the Mambo King. Sickness

occupies the mind, then the recovery, the maybe going home, the maybe tomorrow, then sudden fevers and then no - next week. Your mind is focused on survival: getting through the day. Only survival.

The men don’t walk with these heavy steps because they got AIDS, but because they’re

overdosed on a weird array of chemicals that leaves their bodies and mind looking and feeling like it

went a twenty minute round inside a mixmaster blender. No, it’s more basic than that, it is the struggle

to put one foot in front of the other, and make it to the next day.

Days and nights blend together with little distinction between the waking and the sleeping. In

the early hours of morning when there is sleep at last, “the vampires” come to suck your blood with their glass tubes and needles.

VAMPIRES in LOVE:

“Didn’t they once bleed people for sickness?” Jason Cliff said to me yesterday. “One hundred

times I’ve been stuck since I’ve been here, I’ve counted. Too many times they come in the middle of the night and say, “do this, roll up your sleeves - bark - shit - pee - spit into the cup” like I’m some damn

trained dog! And you wonder why I get angry and nasty? Why sometimes I say get the hell out of here,

and when I do, you say I’m a surly s.o.b.. Did I check my dignity at the door when I came through here?

Did I say that I surrendered who I am? When you accuse me of being uncooperative, some bright

intern decides to give me an ativan or some kind of tranquilizer. So my brain, which ain’t been working

too well in the first place, is now simmering at an even slower rate. The thoughts I’ve been creating,

the dreams I’ve been making, these dreams that I’ve been storing in my huge jar of hopes are toppled

to the floor and smashed. And you wonder why I’m angry and pissed off? With these drugs I can’t see

straight, my head is killing me, and when I tell you that you give me more pills! Fuck you and your pills!

Just let me out of here! I don’t want to have no more nurses, doctors, vampires and other soul sucking the life out of me people around me! Even if you give me another day, I’m not sure if it is worth it. I’m

not sure at all. These drugs just keep me too confused. I feel like a guinea pig in a laboratory, as if I’m some kind of science project for the interns.

I feel like I am caught in the cross fire of your kindness. You’re supposed to be here healing me

and curing me, why do I feel like a casualty to kindness? Why do I feel like a victim twice over? Why am I dying? "

Yesterday a man said to me, “I feel many times with this disease as if I’m alone, as if no one,

absolutely no one, can understand what it means, even though a thousand other people have it. I know

that people don’t live for more than five years, so now I’m left with these few years and there is nothing I can do to change it. I can’t go back and undo the drugging and sex which lead to this. I can’t change anything. In the hands of god? If that’s so, then god is on a very long vacation. Too goddamn long.”

Clement left for home yesterday. Though I spent several months with him, I felt we were still

strangers since we hardly spoke to one another. I hope that I don’t see him here, in a coffee shop or

somewhere else, but not here. When I see the guys come back as patients, I feel a loss, as if I’ve failed.

Spring is coming, though it is cold today. I ride my bicycle down to the hospital and see the

city’s strange parade: Children wrapped up in winter coats looking like pastel eskimos; young

fashionable women on Central Park South swaddled in furs move between hotels and waiting

limousines; and bike messengers with legs like thoroughbreds careen down Fifth avenue, effortlessly gliding between pedestrians and yellow taxis. The wind is cold and blasts against my face. I want to take this piece of life with me to the Alley. Our lives, loves and conflicts and such, all of it has a fragrance and memory to it: Life! That is what I need to carry with me today. l4 March TIME:

It is evening and I meet some friends at John's an Italian restaurant in the Village. It is a world

where time is devoured in huge chunks and food is served by the platterful. Conversations flow. The glasses never empty. The waiter comes again and again and refills each empty plate and glass. The candles richly illuminate this dark paneled room.

The Alley, I’ve left it physically, but not in spirit, it’s still with me. The Alley stands in stark

contrast to this scene here. Time outside the Alley rarely pauses, it’s like a big swollen river that floods

through this restaurant.

The laughter in the restaurant draws my attention. At the table next to me is a group of people

in their late forties, laughing and flirting with one another, talking about sex - with whom and when their conversation is cheeky and brash. A strange contrast to the subtle tones of this dark cave like

restaurant. I’m here but then again, no. I am drawn between the two worlds, the one here in this restaurant and the one on Paradise Alley.

l5 March On the Alley for twelve hours yesterday. New faces and then the old ones, the faces that you

don’t want to see coming back into the picture. Willy J. has been here for two months. A friend said

that crack-heads have been trying to break into his apartment. “There are three of them in my building

and I know they want my stereo.” The terminally ill and terminally addicted, fighting and scared of the other addicts. Addicts feeding on addicts.

Charley, is a homeless person, and it seems a lot of people’s buttons get pushed. The staff

during the course of a day has described him as “derelict, bum, etc.”. When I try to interject a note of intelligence into the conversation and point out that he’s a person, Lana’s response is, “No, you’re

wrong! A bum is a bum, another derelict they found on the street too sick to care for himself. They disgust me!”

Nina is assigned to him and wraps herself from head to foot in hospital gowns. It seems that’s

the true image here, people want to wrap and insulate themselves from these guys.

THE BANQUET:

I would like to believe that AIDS is divorced from politics. That it’s a matter of action for the

spirit. It shouldn't concern our political instinct, but it does. As I’ve tried to avoid the political

dimensions of AIDS care, that ignorance comes back to haunt me. The day before yesterday I was at an AIDS conference sponsored by Burroughs Wellcome Company, who produces AZT and several other

drugs used to treat AIDS. The conference was at one of those lavish conference hotels in mid-town

Manhattan. The danish pastries were delicious, the lunch fabulous, even a feast for this vegetarian, and

the deserts better than most weddings: A banquet for maybe a thousand people. For a moment I

marveled at the generosity of Burroughs, and then realized there is no generosity there, they’re making a mint. A lot of people are dying and a lot of people are making money.

27 March

I spent the last two weeks in the Virgin Islands, nothing fancy, just time in the sun, and time to

do nothing.

When I returned I looked on the name board at the entrance of Alley, some of the names I

recognize, some I definitely do not want to see: Joey, Michael, and a few other familiar faces. Most are

new. I see Manda, the older nurse from Alabama, and she has a friendly sleepy smile, if she is going to work this morning I feel better already. Rita and Julio are also on, Sandy is off. I can work and relax.

Today will be peaceful or at least I hope it will be.

Michael is still here. He was l22 pounds the last time I saw him, he is not dying quickly, but

losing ground inch by inch day by day. His face is sucked in, the tallow yellow skin is drawn tight over his sunken eyes. Despite being so emaciated and worn out, he holds on.

Less people have died over the past week and only one died on the ward last month. Do I see

that as a victory? Now some of the guys are stable enough to go home with a nurse’s aid and have a little more time. It’s a shell-game at best. We move the shell from hospital to home and the very

capricious fingers of fate wield the illusion that somehow AIDS has been stopped in its track. No, I

think it’s more that the line has been pushed back a little further. Our accomplishments and victories

are not really forward leaps of progress, but a huge rubber band which is stretched tighter and tighter: eventually it will be broken.

Franky is back on the ward in civilian clothes with his hunched over gaunt look. He can’t seem

to shake that impression of someone who has the weight of the weight of the world on his shoulders.

Ironic and evident, he has few support systems. However, many guys seem to manage when there are few support systems, most don’t.

Joey’s recent TB tests show an increased virulence; despite this, the hospital, immobilized by

their bureaucracy, has been unable to act or to quarantine him. The only thing they seem able to do is

to have more meetings about the situation.

Leroy is a new guy, about forty-five, six foot six, very black, and thin. He says, “My lungs feel like

an ice pick done stabbed me through my heart.” With that said he lights a cigarette.

I said, “Leroy, if you smoke less it might help.”

“Help? What do you mean help, I’m dying.” The bic click flicks on and he is enveloped in a

cloud of smoke. I walk away and hear him coughing from the end of the hall.

This evening I worked at a nursing home. One woman was one hundred and five years old,

born in the same year as Lawrence of Arabia (T.E. Lawrence), l888. I think of the men on the Alley with their miserly thirty and forty years. Old people line the hallways in geriatric chairs, their faces look like they’re in a state of shock, some are drooling, others preoccupied by the memories of decades ago. Is

there a virtue in living to old age? Seeing the men on Paradise Alley and their abbreviated lives, I think

of Sudan and Somalia where old age is thirty. In this nursing home old people are dying very gradually, no rush, nothing important to do, no apparent dreams, just waiting. A warehouse for old people.

Sickness and infirmity has no sense of justice nor compassion: it is impartial, capricious, and without logic.

I search for a grain of logic and order. I want this to make sense. As if the human experience

itself is something which can be ordered and made sense of. I feel like a character out of the Age of

Reason searching for an order and cause to the universe. If anything, the lesson is to forgo logic and the

expectations of what I what or don’t want. When I've stripped away all my expectations, will I be able

to see clearly?

There is a great peacefulness to Sunday morning. Tender in ways that I don’t always

understand. Calm. Watching leaves left over from last autumn finally falling. The dry ground is covered

in brush. Crocuses, daffodils, and tulips herald the spring: flickers of green against this dark black earth.

1 April

Yesterday I worked on a pediatric ward in an inner city hospital. On the first floor as you walk

in, down a lime green narrow corridor, is the public health clinic. It’s a Grand Central station rush hour

crush of people waiting for hours and hours to see a doctor: Dozens of mothers with their babies in

arm and their older children running around in circles. A psychotic man talks to the wall, argues with

it, and finally he screams and stalks off. Doctors crisply stride through the halls in white coats, pockets bulging with stethoscopes and clinical reference books.

I asked one guy how long he had been waiting. He looked up at the broken clock on the wall

and then checked his watch, “Six hours, maybe a little more.”

One person went in to the Doctor’s office, like a single drop of rain disappearing in the desert.

Upstairs on the pediatric ward Spanish, Arabic, caribbean English blend chaotically with the

wail of crying babies, the squeal of laughter from children playing, and the high pitched aching shrill cry of crack babies. A nurse sits at the desk reading an old copy of Better Homes and Gardens, beautiful suburban homes in full color leap out of the pages.

Infants, shriveled, kicking crack, scrawny, blue, with oxygen tubes snaking out from their

noses, and spaghetti thin I.V. lines pumping life into pain filled bodies. Row upon row of cribs in a room

painted with institutional, jello slick, lemon green paint that’s peeling off the ceiling and walls. The

nurses are the mothers and fathers who don’t come to hold their screaming babies. Again, I want this

to make sense and that somehow in this mess an answer will appear, but there are none. The babies come, some stay for a few weeks, are nurtured and leave for home or foster care.

Later, I went to the obstetrics side of the ward, the mothers were from seventeen to twenty-

two. One woman that I spent time with was nineteen and had delivered her fourth baby, she looked as if she was about to cry. All of this was too overwhelming for her. As she was holding her two day old

baby and bottling feeding him I recalled the Alley. How many of the men on the Alley started life in the same way, with a mother who looked more sad than joyful to see her new son? How many had that same sense of soul weariness?

3 April

My empathy for Joey fades as rapidly as he goes from high to high. Now it is not just him in the

morning of going downstairs and getting high, but several of the other guys. I feel as if I am running a country club for drug addicts. Shit! And I'm worried that they’re bored.

Jose Hermano has been spiking temps for the last few days. He is on his 60mg of methadone

each morning, but that glaze on his eyes looks a lot more serious than meth, it looks like a syringe of

smack, but who can be sure. The fresh track marks are well hidden or perhaps they boot it directly into their I.V. lines. There is a laissez faire attitude about all of this. The staff and the patients know, but this is an intentional indifference. Guys infected with chronic TB walk around without their mask. Others

high and stoned. One tall skinny guy yesterday, Rap, was smoking crack downstairs and came back to the ward -- nervous jittery, he couldn’t sit still, abusive to the staff, refused his medication, and

generally in his efforts to lessen his pain, was himself a pain.

They have so little real time left, not all of them, but a good number of them have less than a

year or two to live. Instead of pushing that line further back and going for the slim chance of staying

well, they continue to buy into the defeat of addiction. I am angered by this dis-ease -- not just the AIDS, but the dis-ease of the spirit, and yes, I am taking their addiction personally.

Here I come with my basket of sunshine, good cheer, and jolly as could be optimism. I could be

the Captain of the Good-Ship Lollipop, but their addiction, denial, and hopelessness is preventing me from getting this damn boat afloat, let alone sailing it in any direction. Some bastard keeps drilling

holes in the bottom, as quickly as we bail out the slimy oceans of hopelessness and failed dreams, more comes in. In my moments of despair, which come more and more frequently, I want to say, “To hell

with all of you! Just go away and die with your addiction and despair. Find me the people who want to be well. Find me the people who have courage and heart, and if not courage and heart, then at least give me those who have a little hope. A little hope I can work with. A little courage I can kindle to a blaze. A little manliness of spirit I can speak to.”

I drive through Harlem and see the acres of burned out buildings. Buildings stout with good

strong walls; yet, burnt out, hollowed inside. How many men of Paradise Alley have returned to live in

one of these buildings? How many have taken whatever kindness and good intentions offered here and returned to these caves? Slowly I drive past the crack houses and watch the desperate and famished in their rat-like struggle to get inside. But there is no hurry, the houses run twenty-four hours a day, seven days a week, with a steady clientele that would make McDonalds jealous. I laugh at my

unintended jest: one kills you in a few years, the other is a slow suffocation of your arteries. Mass

consumption, for the starving. It makes sense doesn’t it? Not much. A house to feed the spirits or to kill

the voices which keep asking, “Why?”

If I walked through the doors and saw the inside of a crack house would I understand

something that I don’t know? No, I’ve seen enough and have no more desire to go inside the crack

houses than to visit my patient’s graves. I do not want to visit more of their pain and degradation. What I want and need is to see that flight away from despair. When I see Jose, Rap, of Joey come singing down the hall like a balloon set adrift on a slow breeze I want to smack them. I want to choke and strangle that evil spirit. The addiction isn’t the evil spirit, it’s a symptom, the evil spirit is the hopelessness and the surrender.

4 April

A new guy comes in, Charley Jones a thirty-six year old African American. He stopped shooting

up in l987, his arms are clean, no fresh track marks, and he has a few scarred veins. His memory is a little faulty, he can’t remember dates and places, because of the toxoplasmosis or dehydration.

He’s crying when I came on to the floor, suffering from dementia, maybe from a brain infection,

or something else. His thoughts race around like a pinball striking the bumpers, hits and the flashes of lights, sensations, he cannot organize his thoughts: Pieces of memory, dreams, and fantasy blend

together. “Yeah, I was studying to be a brain surgeon, but then asked myself, “What is the point of it all?

What is the point of any of it?” I couldn’t see the point of it. So I stopped pre-med school and sat on a

street corner for eight years. Well, I didn’t sit on the street corner for all eight of those years, I worked too, but then I couldn’t see the point of doing that either. Then I looked around and so much of what I was waiting for was gone, as if I was waiting and there was nothing left there to wait for. Strange.

Strange dream. Then because I had that pre-med thing, it seemed maybe I could be a pathologist or a

mortician, and so that’s where I was before I was here, studying to be a mortician.” He pauses for a

moment, as if he had lost his place. “My mother is coming by, she was supposed to be in yesterday, but

she couldn’t catch a train from Queens. Do you think there is a chance I’ll live beyond next week? How

much time is there?” He starts to cry again.

Joey is smoking in the lounge on April Fool’s day and Russel said to him, “You’re on fire! You’re

on fire!”

Joey bolts up out of his stupor and in a panic pats himself trying to finding out where he is on

fire. Russel yells, “April Fools!”

The shrink the other day asked me what I thought would help Joey. I said, “Breast feeding.”

Then realized that may be a novel approach, starting back at the basics and building up slowly.

I went into Jose’s room to take his temperature and he said, "I like when you visit me." I think

he’s playing with my head. Very few nurses around, I’m working alone on the floor for the first couple

hours of the day, no hassle, no interruptions. I set my pace, and work peacefully.

Time has become the enemy. Once it was a gift, this open ended bottle with unlimited

possibilities, wide open capable of doing anything and everything. Now, it becomes the thing to kill.

Time. The paradox is that time is very short, and the disease makes one so weak that they can't really

use the time they have. Some of the guys do have time, but go back to the things which they use to kill time: drugs, t.v., booze -- it's all the same shit.

The afternoon is very peaceful. Pierre is a gay man about sixty years old came in late last night.

In the late l940’s he lived in Paris, roamed the hot spots of Europe and New York while he worked in

the design and fashion industry. Many of his friends had been sick in the past few years and most have died. A visitor brought beautiful fragrant home grown roses, white and red. They are placed in a plastic water pitcher on the night stand.

5 April Intense dose of the Alley today. At l0 AM Joey has this old alcoholic visit him for a drug delivery.

I tried to intervene, but the transition was too quick. Later that day, while I was at lunch another guy

comes up. My attitude towards Joey is quickly changing, he has become, in many ways, a parasite who

feeds on the good will and best of intentions of many people. The energy that should be going towards taking care of the truly sick is wasted on him. He is no less deserving of love and affection than anyone

else, but I have no more to give him. He walks around the hallway in the afternoon staggering. I say to him, “You look very stoned.”

In a stupored and glazed disbelief he says, “I wish I was.” Even writing about him is now a

waste of time and energy.

I’ve always avoided working with addicts over the years. The manipulation and parasitism

exhibited by someone who is an active addict is more than I want to deal with. In my mind I triage, I deal with the sickest, those that I can help, and those that I can’t -- I wish them well. Leroy’s blood

pressure is sky rocketing, he has the look of someone who smoked crack, that red eyed wasted look.

Then he goes into respiratory distress and demands that I help him. And you wonder why health care workers become cynical?

In the midst of my disgust with the active addicts, I find a few today that I can work with. Will

has PCP and is suffocating, can’t get enough oxygen into his bloodstream. He can barely lift his arms to feed himself.

Did he imagine it would end like this? I can’t erase the image in my mind of young healthy guys

with good powerful hands that could create and love, are the same hands that held a set of works and dosed themselves time after time. I curse their stupidity and arrogance, the arrogance of people who

believe nothing will ever touch them, not even death. But death is never more than one step behind, no matter how fast you run, look over your shoulder, it’s there. Every addict has seen it, at least for a moment, then the rush comes and envelops any memory of seeing it. It is no literary metaphor -addiction and death are bed-mates. One way or another it will get you.

Paul, Mac’s lover, brings a bouquet of flowers for him. There is a moment of tenderness and

intimacy that I need to remember. Most straight people, and especially health care workers here, have a very condescending attitude towards gays. I make the extra effort to ensure those men’s lovers are included in the care of their partners.

Though I enjoy working with Julio, he has a lousy attitude towards the patients, “This one, this

one and this one, if they have an elevated blood-pressure we do something about, but him - he is a

junkie - I don’t want to call the doctor.”

That junkie almost had a coronary on the floor. Julio is very funny and doesn’t take shit from

anybody.

A new resident came around and I needed a thorazine order for a patient’s hiccups. She said, “I

don’t want to give him anything he’s crazy.”

She threw me off guard for a minute, “But he’s having severe hiccups and is admitted for

continued vomiting, we should give him something.”

“Oh, give me the chart.”

She writes an order for four times the correct dosage. I don’t argue with her, I just give him the

correct dose - one fourth of her order.

9 April Mac is about forty-one, a good old boy by most definitions, a carpenter from a town in the

middle of Arkansas with two traffic lights, one at the beginning of main street and the other at the end

of it. Over the years as the jobs moved away and the town shrunk most of the young people left as well.

“Hell, there was no reason for me to stay. After all, I know who I was, and I certainly didn’t see too

many others around like me. Besides everyone in my high school class, all forty-two of us, left town

within two years of graduating. Then after getting drafted and spending a tour of duty in Nam, I found my way to the Village. Most of my life I felt like I was a black orphan living in white world, until I came

to the West Village.” With a slow drawl and a casual smile he said, looking to his lover, “I found my tribe and my lover.”

Mickey and Alice have now walked on to the stage. Mickey says he got AIDS from hanging

around women. Perhaps he wishes that were true, but he was a substance abuser, and has his wife

believing his myth as well. It doesn’t make a hell of a lot of difference at this point. He’s from New York and his wife, Alice, is an Anglo-Caribbean woman with a strong Cockney accent and a loud voice. You can hear her call down the hall, “Hey, luv’ ow ya makin’ it?” Despite Mickey’s emaciated and

dehydrated state, she laughs and pushes him on, refusing to let him give in to despair and self-pity.

Yesterday, she brought a small bag of fluffy slippers from their shop for some of the guys who were

walking around in flimsy hospital issued paper slippers. Mac and several other guys walk around the ward with their new slippers like it was an apres ski party in an Aspen lodge.

9 April

Began the day with Freddie saying to me, “Jose died, you know the guy that was on the ward

this weekend, and also Freeman died at the beginning of the week.”

Five minutes later the news came, Michael died. I don’t see the guys dying as much these days.

They get sick, go to ICU, or realize it’s futile and go home.

News of Arthur Ashe is on the newspapers and radio. I had met him several times when I was a

teenager, and remember his unfailing kindness and generosity: not a star even when he was, not

someone unapproachable, but a man with enormous dignity, who I admire immensely. His status as someone who is end-stage was on my mind as I was working on the Alley today.

Michael, the nurse, several weeks ago had described the rooms in his house, the living

arrangements and so forth, and how they would set up the sick-room downstairs. I imagined this

morning how it was for him when he died surrounded by his mother and family. What were his final hours like?

Strange I’m thinking about how it is for the dying who I can’t see, when I am surrounded by so

many who are dying here. I have built this insular shell around my feelings in order to survive, to work one day more, to preserve the illusion that their pain and dying has nothing to do with me.

My knees hurt most of the day, by the middle of the day, I can barely walk, and so stop for a

long break. It’s difficult to concentrate on someone else’s pain when you’re in pain. But it’s an excellent reminder to be empathetic and attentive to others. HCW have a very nasty habit of discounting

people’s pain and suffering, too quick to come up with “knowing professional judgments.” I need my

reminders as well.

Busy most of the day, running for this or that, no time to focus on one or two patients, but I

manage to find the time to help Ramirez, a sixty-six year old alcoholic: he was shaved, showered, and

prepared for when his wife came. I was glad that I was able to do as much as I did, considering how busy and short-staffed we were. When his wife came, she only bitched about how he wasn’t being

treated right. She was angry that he was sick and dying, it had little to do with his care. Being tired I took it personally.

Charlie Johnson is looking stronger every day.

11 April

Yesterday, Pina, the night nurse, said, “Don’t give the guys who can walk water or empty their

urinals, because at night they’ll come to expect that.”

I didn’t argue or fuss, I smile, and continue to do what I do. I find that the real value of what I do

is not measured in the large things, but in the very simple acts.

Britt has been here for over three months. His aphasia is getting worse, now he has trouble

recalling faces and the names of staff. His central nervous system is slowly being destroyed by the

viruses. Because of the work load and the lack of nurses, I haven’t had the opportunity to spend the

kind of time with him that I need. I thought he was shutting down because of his depression. No, he’s

shutting down because he’s slipping away, dying, like a sailboat drawn to the sea by the evening tide.

16 April

Andy was going to be discharged home today, but his roommate said, “Find another place to

live.” Getting back on his feet, ready to leave the hospital after a four week stay, and his roommate of ten years wants out.

Mickey is crying at 9:30. His brother is on the end of the telephone line. “Paul I don’t want

advice, just let me figure it out.” Mickey is exhausted because he was awake all night and unable to get enough medication for his pain. The night nurses were asleep, unwilling, or unable to help him? His

recent brain biopsy has left him a four inch staple mark across his forehead and he looks like one of Dr.

Frankenstein’s earlier experiments. “No more test, no more examinations, I’m not going to take any more of these goddamn tests! Paul, I’ll call you later!”

He is crying, trying to hold back the tears, like a child too proud to admit the hurt. I close the

door and we sit together for awhile. I said to him, “It’s okay to cry.” With that there was a wave of tears

and anger that came out. I give him some medication so he could relax and sleep. I go back to see if he needs more time to talk, but each time he’s asleep, and at noon his wife comes in.

I watch Nina and Lillia work and appreciate how they make the bed, crisply without wrinkles,

the top sheets and the blankets are smoothly draped at straight angles. Lillia, the nurse, has been doing this work for almost thirty years. She speaks with the Puerto Rican families in a way which is familiar, intimate, and soothing.

Raul has been here for about two months, IVDA, about thirty nine, he has gone from the

walking to the scarcely moving. His father comes in every day at 9 a.m to help in the care of his son, the mother a short while later. When he became too weak to feed himself, they made sure they were there

at meal times to feed him, spoonful by spoonful.

I would have lost patience with a child like that years before. Their quiet and unassuming

strength is a powerful lesson in compassion and love. They refuse to give up on their son. They know he has AIDS and has been a drug abuser for years, and that his wife and son also died of AIDS. They

know the lies he’s told them; yet, they don’t let it come between them and caring for their son.

I wonder if the victories that I value so much are found here, in the love which refuses to

surrender and the faith which has no bounds. Unconditional love.

Charlie Johnson says “Man, I’m too sick to go to Physical Therapy, I don’t want to go.”

“You got to go even if it’s to tell them you’re in too much pain.”

He goes, I push those who can be pushed, and hold those who have surrendered.

I feel my faith ebbing and rising -- tide like, like the Ilse de St. Michel: at low tide connected to

the mainland and at high tide an island. Faith is an absurd equation, as absurd as the condition of being human. We fight against the inevitable and know that we will lose in the end, yet we continue to fight.

What makes it so magnificent is the fight. Finding that minim of courage and making the most of it.

Even in the surrender there is courage and though I deny it, there is also a dignity.

When the Samurai warriors were wounded and faced capture, they were offered the

opportunity to commit sepiku, ritual suicide: one deep plunge in to the gut, one long stroke up and then across. Then the Second would decapitate him. That strikes me as being more insane than dignified,

however, there is a dignity there that I often having trouble finding in this mess: the incontinency, the

families that refuse to visit the dying, the chronic vomiting, and the lack of any sense of being human; this mocks any intent to find decency. Many times when you’re sick you feel like a wounded animal

curling up in a corner: you don’t want to be touched, or held - you just want to be left alone. The quest

is to find dignity even in the most absurd and humiliating of circumstance. We value pride over dignity, net-worth over self worth, and wonder in our last days what did this life mean. What does any of this mean?

There is the soul rooted hunger to rip off this disguise of sickness, kick open these damn

windows that don’t open, and fly away from all this pain. I find that I keep changing in this equation.

What I accepted as true yesterday may be a lie today. What I mistook for despair is really hope. What

I’ve offered as faith and an answer is only another question. After all, what is a disease without a cure,

but a set of questions waiting to be answered. AIDS is the question waiting to be answered.

19 April I see Sandy after what seems like weeks away and realize she has become irrelevant in many

ways, since she is frequently off the ward, playing or doing something else, I no longer care. As long as she is away from here, things usually run quietly and well. An absence of leadership sometimes is a blessing and I am very grateful for her absence.

After Sandy left I turned on a Miles Davis tape in the lounge and tossed a volleyball around

with some of the guys. As we toss the ball they tell a little of how they arrived here. The faces are tired.

Charlie can hardly stand because he is weak, so we prop him up in a chair and he is able to join us in

tossing the ball. He smiles and I relax. Questions keep coming around about the disease. The time on

the hand is the big issue today, what to do while we’re waiting to get better, if we get better.

Dan says if I was on the side where you are now, I’m not so sure that if I wouldn’t be afraid of

being around someone with AIDS.

A few families come in at the end of the day. Mac’s lover, Paul, brings his family in as well: his

mother, aunt, uncle, and so on. It was the most casual scene one could imagine. I wonder if Mac’s

family would be as comfortable? The scene seems at once so prosaic and extraordinary. Paul and his family, coming to the hospital to bring flowers for his lover who has AIDS. It is these simple powerful moments which give me strength and courage to keep moving forward.

Charles’ mother comes in, a sixty-five year old black woman, who walks down the hall with

crisp firm steps. She enters his room, smiles, bends over to kiss her son, and gives him a bag of freshly washed laundry.

AIDS this wall we face, like the Wailing Wall in Jerusalem, where we secret away our most

intimate prayers and hopes.

20 April

Mickey and I spoke yesterday, he was saying that they have him on antibiotics for fifteen days.

Is that right? I find myself on the odd, but familiar, tread-mill of defending these medications, some

which are experimental and whose side effects are not fully known.

The thing which makes it so difficult is that often times there aren’t a lot of choices, and you

need to keep your doubts securely near on a very short leash.

Powerlessness is a major issue these days -- powerless over many elements of the disease,

powerless over many of the emotions and attitudes that come with the illness, powerless to control

which medications will be used, and as HCWs we too easily foster and feed into that powerlessness.

We insist that there are few choices and that the patients are too inexperienced to make those choices.

It's an environment of constantly shifting power on the ward: the RNs over the LPNs, the Doctors over the Nurses, administration over the whole mess, and the patients at the bottom -- the ultimate

recipients of our collective powerlessness.

Even in the days where I find it difficult to write about the Alley or what I am feeling, I know

that these are the walls I need to see. The wall which is in front of my face, is the resistance to understanding or accept what is around me, my inability to accept AIDS on its own terms.

24 April

Willy J. said people were trying to break into his house so he signed himself out of the hospital

AMA (against medical advice). He said, “They already stole my stereo and I don’t know what else is

left.”

He’s been shooting up downstairs, maybe near the smoking lounge. Though this place is

crawling with people and security guards, apparently they’re able to find a place which is discreet

enough where they can wrap their arms tight and take a trip. Willy gets his methadone on the floor

and then is wheeled down in a chair by one of the other guys. The guy who was pushing him would get a taste, Willy would get his fix, come back on the ward, complain about respiratory distress and get

hooked up to oxygen. It reminds me of the opium dens in China, where the people would become so

addicted that they couldn’t even get up; they would take a bed, hook themselves up to a pipe, and suck away until they shriveled up and died.

The rhythms of the ward on an “active day” are seen in what is available on the second floor.

Jaxs said, “I’m into heroin, you wouldn’t catch me smoking no crack, those niggers are crazy.” Between

eleven and twelve o’clock the men start coming back for their AZT’s and other drugs, while their

alternative prescriptions are buzzing around their heads like ornery wasps or bees that have been smoked out of their hives. The rhythm of the ward suddenly has this discordant beat, a piercing

Coltrane melody stabbing through the slow methodical tempo of sickness. No, not Coltrane, it is the

like the sound of a wino I saw last week near Times Square, blowing a piece of a trumpet at full force, shards of shrieks and sounds. It is life pushed to the edge.

How far to the edge can we hang on to life without leaping? Is that the question I’m hearing?

Why fight against this decay, when surrendering is far easier? Why push back the wall an inch or two, when the sea is already crashing above the sea-wall?

“It’s just a matter of time, you don’t get it man. You come around here with these pills and your

glad and happy attitude, and it don’t make a bit of god-damn difference. I’m dying.”

Who said that this week?

I know you’re dying. I know. So what do I say to it all? My Peter Pan attitude says that we can

fly above all this shit, above the hopelessness, that we don’t have to surrender. That there is a reason for life, even when it is at the very end, there is a reason for hope and life. There is a reason even to fight against the pain. But these words are rarely spoken. I accept where once I fought against the

doubts and addiction. I demure where once I shouted and raged. I know that if it isn’t Willy or Jaxs, it

will be someone else.

What really kills you is the hopelessness. That is something I can’t fight against today.

The day after Willy discharged himself AMA he OD'd. God, I hate these guys sometimes. I hate

them to the core of my being. I hate the fact that I am crying now. I hate most that I liked the s.o.b. and I will miss him.

Yesterday another guy came in, a new Rodriguez, and he looked exactly like Willy. Same kind of

glasses, same face, same height. I had to remind myself Willy was dead. This place grows more bizarre by the day. Rodriguez also has respiratory failure, the same kind of sickness that Willy had.

I know that I am frying, burning out, when I can no longer see the guys as individuals, I am

seeing them as some kind of aggregate of pain. Their faces blend one into the next. The stories of the

addicts and their lives are no longer distinct, but merge together in a seamless collage called Paradise Alley.

Mickey is leaving today with his wife, mother-in-law, and his sanity relatively well preserved.

Sanity is a priceless commodity, as priceless as a pain-free day. He has been very kind to the other guys, providing slippers and small favors from his business.

I wish I could say that Mickey left here looking better than when he came in, but he doesn’t.

He’s thirty-eight and looks like he could be pushing fifty, with his stooped shoulders and that pale ghosted look about him. Mickey and his wife brought a bit of humor and life here. Alice’s loud and

unabashed laughter would stretch from one end of the ward to the next, which at times would dispel the gloom.

There is a curious sexuality here. A disease, some, if not many, got through sex, and it would

seem that sex would be the last thing on their minds, except for Ross. He looks like he wants to jump on anything that has an orifice. But the disease comes back to him, there are days where he feels strong

and healthy, and other days when he looks like he could run five miles and it wouldn’t faze him. Today, he is energetic for a few minutes, but by the end of the day he is lying in bed bone weary. There is no making peace nor calling a truce with AIDS, it sets its own terms, and calls its own tune.

Milo is a forty year old gay black Panamanian with a temperature of l04.8 that creeps up slowly

to l05.4: acute Tuberculosis. He needs a hypothermia blanket to bring down his temperature. I call the Central Supply office and they said they may or may not have one, I need to come down and look for

one. As I walk in the four people who work in Central Supply are gathered around a desk in the back, chatting, sipping sodas or coffee. They look up and return to the conversation. When I explained I

called about a patient with a temperature over l05, after a few moments of discussion, one of them reluctantly helps me to find a hypothermia blanket. It’s about twenty years old and lacks the rectal

probe to set the temperature. Twenty minutes passes before they locate several probes. One Central Supply clerk turns to me and says, “You’re lucky we’re going through all this for you.”

The probe doesn’t fit the machine and a supervisor was called. When she arrived, she stepped

into the room, reached up on a shelf and handed me the correct one. Forty minutes later I returned to the floor with the machine.

Milo is now so hot he’s shivering. When he turns over to have the rectal probe placed, there is a

heart tattooed on his ass that says, “Sammy’s heart.” I turned on the machine and waited for his

temperature to register, but it didn’t, the machine was broken. Instead, I sponged him down till his fever broke an hour later.

I’ve rarely felt in jeopardy with AIDS, but TB is a definite threat. These little paper masks I wear

over my face feel as useless as wearing garlic to ward off vampires. The next day my lungs are a little congested, I have a little pain in my chest, and it may be from being around people who smoke

cigarettes, but I’m not sure. Forty-five percent of addicts with AIDS in New York have TB, according to the CDC, however, the rate of concentration for people who are hospitalized with end-stage AIDS is

much higher, and much more virulent. I’m not only in the belly of the beast, I’m swimming in his lungs as well.

Charlie Johnson is getting ready to leave this morning, he is looking stronger. He says, “Thanks

for all you’ve done for me.”

“Glad to do it, especially if I don’t see you again.” I said with a smile. I don’t want to see him

again, maybe in a coffee shop or pool hall, but not here. Usually when the men come back, as inpatients, it often means they’re that much closer to dying.

We talk a little bit longer, his mother and sister have come for him. I catch a little of that buzz,

the hope and faith which at one time seemed distant.

There is a sweet satisfaction in seeing someone leave a little bit stronger and healthier.

POLITICS -POWER- AIDS: The Incestuous Crucible.

For the sake of your survival, you push the thoughts of the men and the Alley to the back of

your mind when you leave; otherwise, it will devour you. However, AIDS never leaves you, you can

never leave it: In bill-board high visibility it reigns; on the street corners, in the news, someone famous dies of AIDS, or a personal friend is sick. No running away, no vacation from it.

A part of me thought that my next step in AIDS would be working with children, but I prefer to

work at the source of the problem, which is a lack of political action and commitment. When you think

about the source of this disease, we see the political element.

In working with the crack babies last week I know that over the course of their lives the cost

will clearly be in the hundreds of thousands of dollars in special programs, medical care, and maybe, even jail. We need to understand and respond to the source of the problem: Why are these parents smoking crack or shooting up? Where are the aggressive AIDS education programs?

The politic system says there isn’t enough money for drug treatment programs, job training,

rehabilitation, housing, and so forth; however, there is enough money for prisons and to hospitalize the infected addict with AIDS and maybe even to give him/her Social Security or disability payments.

Prevention doesn’t pay?

Several years ago there was a huge dead oak tree that was starting to topple towards power

lines near my house, when I called the utility company they said, “We can’t cut the tree down, it’s cheaper for us to let the tree fall, and if it causes damage we’ll deal with it then.”

The logic is that it is easier to fight a fire once you see it as opposed to preventing it. Mrs.

O’Leary would have appreciated their view point, I’m sure.

The need is for a radical transformation in our thinking: Radical meaning -- to reach to the root

of the problem.

The vying viewpoints respond to AIDS in terms of their own specific agenda: Allopathic

medicine insisting that the answer lies in killing the virus; gay activists focus on their

disenfranchisement from power; and politicians in their greased walk across a tight-rope sway high

above the fray and hardly acknowledge there is a plague. In the meantime, lovers and families hold the dying in their arms and wonder when this plague will end. It is in this crucible that the politics of AIDS is fought.

That is the challenge which faces us next. After we close the caskets and seal the funeral urns --

how do we give voice to our sorrow and rage? And these hands which massaged the emaciated bodies

of our loved one, what will these hands now make? We cannot make monuments from our grief, we

can only create from the joy they left us. Our process of healing is made in weaving together the torn

pieces of our lives, and from the memories of our sons, daughters, and lovers who have left. We wear their names and memories in our souls.

A friend told me that she was carrying the ashes of her brother and laughed at how much it

weighed. She was singing and crying at the same time, “He ain’t heavy he’s my brother.”

While the human part to this equation is made in the real flesh and blood before us, there is

another part which is sterile, cold, and lifeless as a mausoleum. The politics of AIDS.

Politics has claimed more lives than bullets and without doubt, AIDS embodies the politics of

the hours. It embodies the most sordid elements of how politics and human interest collide, and the

politics of AIDS is changing the equation faster than anyone of us are prepared for. Pharmaceutical

companies no longer have (the complete) carte blanche to charge what they want for AIDS medication,

however, there is still scant scrutiny and oversight of their pricing practices. People are dying and pharmaceutical companies, in many cases, are charging in excess of 400 % above gross cost. The

plague will continue to claim lives as long as the pharmaceutical industry continues to show a steady profit.

And the FDA? They’ve managed to change their snail like crawl on approving new AIDS drugs

to a lumbering turtle’s pace. In the meantime, politicians remain mired in their continued parochial

interests and bury their heads in the shifting and uncertain sands of influence, interest, and the latest Gallup poll.

What can you and I do? Where possible help in the care of those with AIDS. Listen and be

supportive to those with AIDS. Speak to your kids and those at the local schools. Speak to the

invulnerable teenagers who do not use condoms, the invulnerable who are gradually becoming HIV +.

We need to learn to speak to one another again (the gays and the straight, the conservatives and

radicals, the junkies and the bourgeois) and find the common language which can transcend the walls we’ve created. We need to speak to our neighbors in the candid and direct way which leads to understanding.

We are isolated from one another, trapped by our televisions and endless reruns. The front

parlors of yesterday where people gathered at the end of the day to talk and share the news of the

world has been replaced by the queer blue flickers of televisions in row upon row of houses stretching around the globe. It is not only in the US, but in the cafes around the world where people gather at the end of the day, the conversations are now stilled, and attention is focused on the television screen.

The theme of the hour is isolation, passivity, and powerlessness. How do we break out of the

isolation and reclaim our power?

We are a society which seems hell-bent on ending the isolation and loneliness, yet we are stuck

in some kind of endless churning and running on a hamster wheel of unsatisfied desires. We are

exhausted by our efforts and are still lonely. The Personal Columns are filled with row upon rows of people extolling how much they want a sincere - committed relationship... something to end the

isolation. If this disease or plague is “disease of the spirit - a disease of isolation” - then how do we heal

it? How do we heal our collective isolation?

Though AIDS is a metabolic and physiological condition, however, to say that it is only an

affliction of the body, is to deny the reality that disease exists in four parts: spirit, emotion, body, and

society. Disease exists in a context, the context is society, and the way that a disease manifests itself is a product of the culture and its attitudes. Disease is also given shape by the way society responds to the illness. For example, AIDS spread initially through gay and IVDA, the cultural context was that these were “marginalized groups.” Society in effect said, “If a few thousand ‘fags and junkies’ died - - so

what?” The disease at that point was clear: it was them, not us. We returned to reruns of “Days of Our

Lives” or the “Nightly World News.” The news of the world, soap-operas, lives of the glitzy and famous,

is filtered through satellites, absorbed into our television sets, and sucked into our minds as the equivalent of participating in the world.

This disease of the spirit is now a plague, a pestilence which strikes into every home. When we

walk away from it or turn the channel, we come right back to it. It is no longer just the gay or the junkie; it's Mary the blond hair blue-eyed high school senior in Bismarck, North Dakota; Wilson the banker in Greenwich; and it is also very much the men I’ve spoken of here on Paradise Alley.

The change in the disease will not occur solely from some chemicals interacting with pieces of

RNA or DNA, the change is on many levels. It’s not just prevention as in “safe sex” instead the word needs to be “SAFE CARING -TRULY INTIMATE SEX.” The other part is to see and respond to our

isolation. We need to speak to our kids and their friends about safe caring sex, and make contraception readily available. The lack of available contraception doesn’t change a teenager from thinking about

sex. We need to rip away our thin veils of morality. We need to demand funding for AIDS education,

drug treatments, and decent prenatal care - NOW - not in a year, when a few more thousand will die.

Is AIDS in the final analysis a call for a radical revolution? Is it our call for Perostroika and

Glastnost, an openness to speak our mind and seize control over how our society is run? As the body count from Viet Nam continued to rise every year, thousands more took to the streets. By the same

turn, will this Plague, as it continues to grow in leaps of ten thousand to the hundreds of thousands,

compel us to become politically active or further isolated? How many more thousands will die before we speak out? What will compel us to speak out during this Age of the Plague?

In the millennium to come, what will they say about this Plague, and how we spoke?

30 APRIL

I was listening to Pedro and another new guy Lenny, both about forty, having a conversation

and it was like listening to two old men. “Sometimes I don’t move my bowels for three or four days, there are other guys in the program who are like that as well.”

“Well you know what I take?”

“Well, I’ve been taking this kind of laxative.”

Lenny talks about living in Brooklyn and being bored with the weekends, “Come Saturday, I get

bored with nothing to do so I take a small handful of xanax and sleep until Sunday. Then Sunday comes around I wake up, watch the morning religious shows and take a few more xanax, before you know it’s

Monday and there is plenty to do.

As little time as the guys have, time weighs heavily on their hands. How to kill time, as if time

was the enemy. Brit has a calendar on the wall marking down the days. Though often confused now, he stills marks a day off the calendar, like a prisoner counting down the days until freedom.

Mac, was inadvertently given penicillin even though it is written on his chart, “Allergic to

Penicillin.” Though he was having a reaction throughout the night, the doctors didn’t even bother

visiting. They ordered a little oral Benadryl which took off some of the itching, but not much. I went to

the resident and said, “I want him evaluated by a physician - now.” Amazing what a little push does.

Still on something as straightforward as this the resident and intern couldn’t decide what to do.

“Hey guys, maybe a little benadryl I.V.?”

“Yes, good idea.”

tomato.

In about twenty minutes Mac is resting comfortably asleep, no longer the colour of a ripe Jersey

2 May

Last week when a Patient Representative visited Joey, he was caught with a fifth of whiskey in

his pocket, so he went into the bathroom and chugged it down, he of course became sick. When I asked him why, he said, “I’m in so much pain and they won’t give me anything for it.”

Yesterday, Joey left the hospital in his pajamas and was wandering around the streets, until a

nurse found him five blocks away sequestered in a doorway blissfully sipping a bottle of Southern

Comfort. Later that night, when he was escorted back to the hospital, he was in pain so they gave him

an ativan and a shot of demerol, on top of the whiskey or drugs he was able to absorb while out on the street.

In the middle of the night he wanders around waking up the other guys and asks them for a

cigarette. Joey, is becoming more and more like the HIV virus, parasitic, opportunistic, which will do anything to feed its voracious appetite, oblivious to any concerns except its own desires.

Though I had been insistent that I would write no more about Joey, he is integral to the

narrative of the ward. There are sixteen beds here, sixteen chances for stretching your life out a few more months or even making it for another year. Joey remains here because they can’t find another

place for him. He is too much of a risk for any other kind of facility, he smokes in bed and falls asleep, and his bed has caught on fire twice in the past month. The attention of the staff is drawn away from

those who are terminal to him. The hospital cannot nor will move him to a restricted unit. Evaluated for placement by half a dozen housing and shelter programs he has been rejected by all of them.

I look over my notes from the beginning and see how much I did care about him. I was drawn

into the web of his pain and stories.

The old man, Rodriguez is dying. When I have him, I usually do a very nice job of getting him

shaved, clean, and comfortable. Then Senora Rodriguez comes in complaining about everything, as I

said earlier, she is angry that her husband of over forty years is about to die. She seems to understand why he is dying, but can’t admit or seem to accept that it is the same disease that the junkies and gays have. I heard her say to a friend in Spanish, “He has pneumonia and you know his health hasn’t been

that good for the past few years.” I feel that she expects us to wave our hands over him and he will be

all right. Maybe because of my beard and hair down to my shoulders she expects some kind of J.C. and Lazarus-like move? Hell, I have a hard enough time getting motivated to go to work during the past

week, let alone any slick hat-tricks.

Difficult to motivate myself to do things or to make that extra effort today. I want to have the

time to sit down and talk with the guys about what is going on with them, I want to get inside their heads, but there was little opportunity this weekend.

By the time the weekend comes the guys seem only too happy to get a break from all the blood

tests and hundreds of other procedures. If it isn’t sticking you with needles for blood samples, then it’s

another x-ray to verify the x-ray they took last week, or another stool sample. You want to be done

with all the tests and then when you think you’re done there is a brand new crew of fresh eyed interns

and residents to show-off to the doctors-in- charge how clever they are and all the tests they can

conjure. A game of chess I’m sure, the interns trying to be one step ahead of the residents, the residents trying to stay one guess ahead of them and the doctor who supervises them, and then somewhere

down the line is the guy lying in bed asking, “Why are you doing the same test on me for the third time in two weeks?”

Quick whispers ensue, “Have we done this test on him already? Do you have the results?” In

that flurry of questions and accusations of lost tests and so forth comes a quick reply from the huddle, “We need to verify the results. Have a good day.”

The patient’s mistrust is deep. Even the guys who have been here for only a short time are

wary of the treatment, though it’s all they got, they’re carefully watching the hands of the people who

are shuffling those shells around, like a three card monty player at Times Square. Too often we accept the shuffling of the shells around the board as being valid, as if that was the real answer to the enigma

of, “Why am I sick this time and when can I get out of here?'”

Britt is leaving, he is like a lobotomy patient. The toxoplasmosis and the brain-lesions have left

him numb and unable to find the words for what he needs. He says, “pain” but has no clue as to where.

Seven months ago he was a medical technologist, on intimate and familiar terms with microbes and

poisons. Today, they, the HIV and microbes, hidden in tiny crevices of his brain, have sprung to life and are slowly devouring him. His sisters came for him yesterday to take him back to his hometown in

Florida, a sleepy little village somewhere near Orlando: the place he always wanted to leave. He said

once, “It’s the kind of place that would stone you if they knew you were gay.” He wanted to go to his

other sister’s in Pennsylvania but there wasn’t room for him there. Now he is going back to his hometown to die. Will he remember it as home?

Pat is giving me a rap about God and salvation - I excuse myself. He looks a little offended, but I

have this problem with tent revival evangelism, the dogmatic side of religion. Though I am a Quaker, I see more of my Pagan side emerging these days: inside this sterile hospital ward, I see the wind and

trees as god, the earth sacred, and take incredible delight in watching the flowers grow in the garden.

St. Augustine would ponder on the virtues of a god who would allow for sickness and pain to

exist in the world, and though I sometimes chew on that strange equation, most times I’m satisfied in knowing that we can put a pause to the pain. That is the miracle I am grateful for.

7 May

I turn the corner first thing in the morning and Senora Rodriquez is weeping, her husband died

early this morning.

His room is cleaned and Carlo is brought in, last month it was Michael who was in this room,

and the month before someone else died in this room.

These rooms hold too many deaths: time needs to be given for the Spirits to leave.

Many people are sick and one is a few hours away from dying. Joey is high and wandering

through the hall, demanding his methadone, which was given to him this morning.

A phlebotomist sitting at the nurse’s station asked, “How can you work here?” I don’t tell her

directly and part of my macho stuff says, “Nah, it doesn’t bother me.” But the truth is that it does. Each

death leaves an impression, a memory, though I may not acknowledge it.

Pancho walks around the hall with a t-shirt he made for his wife that said, “Maria is the

Greatest.”

Milo, the black Panamanian, is dead. I try to find out what had happened, because when I left a

few days ago there wasn’t the hint of him about to leave. Though he had temperature spikes, he still

looked strong and as if he still had time. On Wednesday morning they say he was feeling a little poorly

and died. Strange tales. In the air is a whiff of negligence. Is that why there is the high rate of turn-over of interns and residents here, and subsequently of the patients? Too often we find sloppy medicine,

tests that aren’t needed are performed again and again, and patients are left with few clues as to their

status. “Am I going home today or next week? Can you tell me in plain English what is wrong with me and how long I have to live?”

No clues. It is a directionless maze, both AIDS and the way that care is provided here. Few

physicians and staff members communicate clearly to the patients.

Katey told Sandy that I was at the end of the hall reading a newspaper. I was finished with

what I was doing and had taken a fifteen minute coffee break. This big brouhaha ensues. Katey and I

spoke later, and I told her how disappointed I was in her creating a problem about something that was none of her business.

That is the thing that makes it so hard about working here on the Alley, even after almost six

months here, I still need to keep one eye watching behind me. Is it nursing that attracts and seems to

produce both the best and the worst in people? This is the kind of smallness that I often rage about in

nursing, instead of talking directly to people, we sneak around and gossip, create rumors, and don’t confront issues or conflicts directly. We find ourselves compromised by rumors and innuendos, cattiness, and gossip.

The organizations which are the “care providers” need to be as strong and viable as possible. If

our organizations allow for in-fighting, ego turf wars, and poor work environments then our energies are diverted away from two key targets -- the clients’ well-being and ours.

The need, now more than ever, is to create nurturing and supportive communities of care-

givers committed to the well-being of the client and staff, a community characterized by respect and

tolerance for one another. If that alone was all we did, in many ways, that would be far more than we do now.

SURVIVAL

AIDS work is not a self-less service. No matter how much we may love the person we are

caring for, it cannot be a self-less service. If we are caring for another person at the expense of our wellbeing, then the service does not become an act of love, but one of martyrdom.

It is imperative to understand that the pain of the one you’re caring for is their pain, not yours:

your’s is something different. When you make their pain your pain, then you have twice the amount of

pain. This sounds very simple, however, it forms a set of very thin lines between those care-givers who survive and those who don’t. We need to not only survive “the battle” we need to survive “the war.”

In order to have the strength to do this work I need support, and an environment which will

enable me to be there for the sick, undistracted by issues of politics and personal conflicts.

The challenge which faces us every day is - how do we care for another person and survive?

l5 May “You made me fall down and bleed, and now I am bleeding and suffering from your sins.”

McIntire comes back to the floor, still disoriented, and I thought he would have been dead

months ago, but he survives. If it wasn’t for the love and devotion of his mother he would have died.

There is that dignity of spirit that I so much admire in her, she is direct, and has the presence of

character and spirit that is much like Lillia. These are the kinds of people who have been here since the beginning of time, caring for the sick, tending the home fires, and when the wars at end they were

there waiting. There is a Buddha like calm in her devotion. A calm that I can only see and admire from afar.

Red, is on the ward, a genial enough forty two year old black IVDA, who’s been shooting up on

and off for twenty-two years. “It started in Nam,” he said. It seems that is a frequent line I hear,

“’Nam...”. All these war heroes. He spins his story with an eye to the listener, “My buddies blown up,

and out of a squad of eight men, there are three who survive. I was one of them.” His eyes dart around

the room, his foot and his hand tapping, nervous, yet trying to reel off this image of being calm and collected.

Red found out that he has AIDS this past week and probably has been positive for a long time. I

try to get past all the patter and bullshit of reason and excuses of drug addiction. “You know the last job I had I was working for the bank and handled millions, you know what I mean, millions. But I started feeling too good about myself, I didn’t steal. In fact, when I saw a friend of mine who stole from his

mother I asked him, “Why did you do that?” When he couldn’t give me an answer, you know what I

did? I beat him right there in front of his mother. And when I was through his mother said, “Thank you.”

Red is on a roll, he’s no longer talking, it is now a tape-recorder, he is hitting his stride as he is

reeling his rap, it extends outward like a fisherman throwing a net out to the sea. He seems to be saying to me, “Hey, I may be a drug abuser, but I’m not a junky.”

“Though I was using drugs, they weren’t using me, you know what I mean. I had money, a car,

and a girl. Though I wouldn’t see my mother for months at a time if I was driving by and saw one of my mother’s church friends I’d offer them a ride. They would tell her what a good boy I was. I didn’t take

no money for gas or anything. But I didn’t want to involve my family in any of this. One guy who had been with his family in Harlem, they had all been tied up and were robbed ‘cause he was living with them. But not me, I wasn’t like them other junkies, I never took money from no one. I earned it.”

His eyes are dark, I can’t see any clarity in what he is saying. In short, he’s scared shitless, as

the expression goes. He’s in a panic. He knows he ran into a wall. Three I.V. bottles are running into his

arms and he can’t breathe right. “I feel like I’m sixty years old. Why?”

How about starting with twenty-two years of shooting heroin? No, I don’t hit him with that,

he knows it, but he is at the stage which is l00% denial. It’s amazing that you could be flat on your ass from all kinds of self-inflicted pain and still say, “It was someone else’s fault.”

Trying to sort out the myth from the facts. Red, how long have you been clean? One year? Two

months. It gets lost in the story. Oh, three weeks?

Jorge, who is a little older and been shooting up for twenty-six years begins to laugh and tells

Red to shut up so he can sleep. The two of them are like puppies and kittens in a burlap sack, they snip

and snarl at each, knowing their familiar tales.

Later that morning, I hear Red tell the same story to Inita the nurses aid, almost word for word.

The floor is livelier today. Red and Jorge with their “Nigger - Spic routine” back and forth - -

done in the spirit of play, but I wouldn’t be surprised if they have a fist fight. But they’re both too sick to stand up and duke it out for more than a punch or two. So much the better.

Joey fell down last week and was tied in a wheelchair. He said, “You made me fall down and

bleed, and now I am bleeding and suffering from your sins.” Come again?

l8 May

Finally, they decide that Joey can leave here. Now in most places this would be straight-

forward except in this hospital. It’s almost 2:00 in the afternoon, Joey has come back to the floor, he is

stoned or stupored on something or other and still they’re going to discharge him to an SRO

(residential hotel). Part of me is delighted, happy as could be. I want him out of here. I hold little

sympathy for him, he’s been here for the past five months, his stay has covered the entire course of this

text, and perhaps this should be the departure point for me as well. Joey who still has T.B., which is

supposedly being treated and under control, is finally going out on his own. When I see him on the street corner will I stop and say hello or will we walk by one another?

I empty out his room, put his clothes and personal effects into a plastic bag. I know that I gave

him everything that I could and there is not a thing more I can give. In fact, I’ve given too much. The

day before yesterday, I had several guys who were quite ill and he kept interrupting me for cigarettes

or asking me to find his wallet, which he lost for the seventh or eighth time this week. Part of me feels

betrayed that he falls into that twilight zone of not cured and not dead. Junkies the living dead. He

weighs about ninety-five pounds, has chronic TB and end-stage AIDS, and is still shooting up, he seems like a “short-timer.”

I notice the change in my attitude towards him over the past five months. At the beginning, I

was an advocate for him when no one else would. I listened and cared for him when no one else would.

My ego was a glorious white flag on a field of red poppies. The more I gave him the more he demanded.

The (active) junkie feeds his addiction through whatever will get him through the night:

chemicals, booze, pity, anger; virtually anything can be grist for the mill. The bitch of it is that he’s very

capable, he can find himself a fix at 1 a.m. in this hospital with cops crawling all over the place. Maybe

it’s only a very heightened instinct for survival? I wonder what kind of role would Plato assign to him

in his Republic? Or Shakespeare? Would he have been the jester, tormenting the noble and titled?

Does he serve as some kind of cautionary tale or is he just Joey, with no more contradictions and

character flaws than the next person? Working with him has called forward a lot of my prejudices and impatience. I learned a great deal about the limits to my patience and the need to more clearly define my parameters.

He is ready to leave and who should show up but a drug dealer. Now you may ask, “How did I

know he was his drug dealer?” Was it the dark glasses, the rambling incoherent conversation, his

insistence that Joey stay in the hospital to maintain some kind of business operations, or an educated

guess based upon my encounters with similar such folk? A bit of each, but it may be the first time that I’ve seen someone’s dealer take such a personal interest in their client.

Joey leaves the floor, his pants almost falling down past his emaciated waist. He says, “Thanks.”

I say, “good-luck.” We shake hands and he leaves.

Jorge, who came in last week, finally told his girl-friend, who he has been living with for the

past three years, that he has AIDS. We talked about it a little, he seemed as if he wanted to cry but

couldn’t summon the energy. When he told her she said, “I want to end the relationship.” He is leaving today, going back to her apartment for a little while. He leans heavily on a cane, at forty-six he has

severe rheumatoid arthritis and full-blown AIDS. I ask him what he would like to do when he gets out.

Is that the kind of question a middle class person would ask -- thinking that there are infinite choices?

He made it clear, there are none, choices are long vanished, but he laughed in that way that he does

when the conversation gets a little too personal, a little too close, “I want to go back to the apartment, watch t.v. and forget about AIDS for awhile.”

Marco, a stoutly built Viet Nam vet, is in for a few days of treatment. Later in the day we get a

chance to talk, “I don’t know how much time I got left, but I got a sixteen year old son, and I need to get out and take care of him. We live on the upper East side, not exactly there, more like Spanish Harlem,

and there are too many things to get in trouble there. I keep myself locked up inside most of the night.

When I leave everybody wants to be my friend and sell my this or that.”

I give him my sermon on staying clean and getting in with good people, NA or AA or some kind

of “gang”( as Vonnegut would suggest). I see the conflict with him. As with many guys they start getting healthy, forget, and then go back to drugs.

For the first time in weeks I was able to talk to the guys, not about the grand design of things;

but on medications, strategies for staying healthy, what will they do, what kind of support, where do you get help, and so on. I keep throwing out life-savers from this sturdy boat, but I know it isn’t

anywhere near as sturdy as I would like to think it is. It’s as fragile as anything else, but I still chuck these life-savers out.

Andy left for an SRO the day before yesterday. A few days before he was to be discharged

home, his lover put all of his things downstairs in the lobby of their building. Andy’s name wasn’t on

the lease so his partner, who I never saw here, simply put his things out. I’m lost for words. They’ve

been together for about four years, Andy gets sick, can still pay his bills, and his partner kicks him out

with as much grace and fanfare as you would say good-by to yesterday’s newspaper. Randy Newman's

song is humming in the back of my head, “Human kindness overflowing and I think it’s going to rain today.”

This past weekend he went to see his family in Massachusetts. He hasn’t told them he has

AIDS, and like always he will visit, someone will tease him about not having settled down, and ask why is he still the bachelor uncle. Will he tell them this time?

26 May

The floor is peaceful. Terry is a forty-five year old white homeless guy who can’t figure out how

he got here, “Let’s see my mother died in l982 or was it l983, then my father, a long time ago, no brothers, no sisters. No, no one knows I’m here. What year is it, it’s l972 . Isn’t it?”

Quiet.

Lethargy seems to be the key word here on Sunday, not many visitors on this holiday weekend.

27 May Sandy is on the floor and she is causing havoc and confrontation at each turn. The resident

Stan told her again, “Please mind your own business and stop interfering with what we’re doing.” Later she is telling Jean Pierre what he should do in his department. She’s like molasses to a car’s engine.

I greet Terry with a big hi and how are you this morning. He shouts out, “Get out of here and

let me sleep.” Well, the fairy godfather of good intentions just got his wrists slapped. Later in the day I help him shave and get washed. It seems that it’s been a long time since he has spoken to another

person. He’s kept a lot of time and distance between himself and other people during the two years he’s lived on the streets.

Red comes back to the hospital, “I only have three dollars and it took a dollar to get here and I

don’t have any more money till Friday. Is there something you can do for me, anything at all would be

appreciated?”

A crisp bill was asked for, but it was the Social Worker who could do more for him than a

donation. Some of the Social Workers, like Jean Pierre, seem as if they do the impossible: find a place

for someone who has no place to go, make money appear when there isn’t any, resolve crisis situations by the basketful each day, and still deal with the mountains of paper work. They are like the little boy

with his finger in the dike, holding back the flood of the inevitable. The inevitable is that there are more patients than beds, more patients than services available and not enough money available.

I wonder when does a system breakdown, does it do so gradually? Does it grind down like a

machine on its last ounce of gasoline or does it explode one day?

I noticed the difference in my temperament after doing Co-Counseling (a type of therapy). It

would be impossible for me to do this work without the benefit of a regular counseling or therapy

process. The writing of this book provides a limited way to do this, but there needs to be a consistent way to access the emotions and feelings that come into play. The work setting, which is the source of

much conflict, would be the best place to gain support, however, Sandy stands firm against any kind of interactive process or support group. When John, the psychologist, was here he tried to run some

support groups for the nursing staff, but Sandy would cut off people and try to prevent the group from talking about the issues they found distressing. She insisted that the staff didn’t need any kind of support and after awhile the groups met less and less frequently.

Nachez is a patient who has been here for a week. There had been a wall between us for the

first few days, then gradually we talk a little. The first thing he says to me this morning is, “Yo, do you

got any tissues. Oh, by the way good morning.”

Later that day he was talking to Jack the evening nurses aid on the floor. He said, pointing to

me, “He’s all right.” I liked that. I need the strokes. It helps me to focus on the reality that my attention is with the patients and not to get distracted by Sandy or anyone else.

At the end of the day I came away with the sense that I had spent my time well and that it did

make a difference because I was there. To me – that’s a victory. Score one for the home team.

29 May

NO BIG DEAL

When I came on the floor this morning Terry was tied down in bed. The night crew still finds it

easier to tie someone down than to help them. I released his restraints, bathed and shaved him, and

even had the time to give him a quick hair-cut. When he needed something I didn’t dismiss his needs

as “another pain in the ass patient who wants something” I helped him.

There is an attitude by nurses that somehow street people and addicts are in a lower category

of human beings. It’s such an easy mind set to get into. The street people we work with often arrive

unwashed, with psychiatric problems, and can be very difficult to deal with; especially, when they’re this sick from AIDS.

Jack, a brother of one of the nurse’s aids on the floor, was admitted yesterday. This morning

he’s crying as I walk by his room, I close the door and for a half-hour we talked. He spoke about being

end-stage AIDS and all people want to do is find out if they will leave him this or that behind to them.

His son, who is eighteen, cannot or does not want to visit. “The only person who seems to visit and

come around is Ishmael, my youngest brother. My sister came to me yesterday and said, “Jack, you

know I love you. When you die, can I have your car?””

Ron, a six foot-four, two hundred and twenty pound black man volunteered to spend a few

hours with the guys. It’s good to see men reaching out to other men. On the Alley there isn’t a lot of real solidarity and communication between the men. Many of the relationships seem characterized by mistrust and guardedness, rarely do the guys open up and really talk to one another. Everyone is

usually cautious, guarding that private emotional terrain of self and fear. Ron moves easily among the men, stopping to talk and listen.

SLY:

I spoke with Sly this afternoon, a forty-six year old “dope-fiend” as he described himself, who

with his shock of white hair Sly could easily pass for sixty. “I’m not even a junkie, I can go by for a

whole week without shooting up. How long have I been shooting up. Let me see, uh ... thirty years? But

I was clean from l977 to l980 and then well, I kind of lost my way. My friend kept inviting me to stay

with him, kept calling me to come on over and get high with him and after awhile... you get lonely.”

Heroin and cocaine seem like they suck out more years than you have to give. It’s like the

embezzler who sneaks a few twenties out of the till over the years, and soon you find the business is bankrupt. The embezzler is sitting pretty somewhere, while your pockets are empty.

“I was a housekeeping supervisor at that hospital down the street, I was there for quite a few

years, but when this (the AIDS) started getting me sicker, I had to stop. And when you stop working

you got too much free time on your hands. You sit around in your room being sick, watching television,

looking at what’s going down on the streets below and you start... getting the itch... the need to get up and find a way to get out of being lonely. So I call my friend Sam up and we do the deed.”

Doing the deed, used to mean sex. I don’t think the word choice was unintentional. Getting

high, doing the deed, or unprotected sex you wind up getting AIDS from both of them.

Even after months of being on the ward, having gone through my stages of complacency and

thinking that I had nothing left to learn, the lessons keep coming.

11 June

Yesterday there was a baby shower for Maria, lovely party, balloons, food and all that; yet, I

stayed away. I remained with the patients. I don’t want to laugh and jive and pretend that some of

these people aren’t the same ones who would turn around and stab me in the back. One minute you’re having coffee and talking with your colleagues, and the next minute they’re gossiping about you.

This morning the new doctor from Jordan told Terry that he had Kaposi Sarcoma and started

to walk away.

Terry said, “Wait. Are you telling me I have cancer?”

“Well, yes.”

“How long do I have left.”

“No one knows for sure.”

“Doc, cut the crap. How long ?”

“Three months at the most.” And the doctor, obviously flushed and embarrassed at having

been pinned down by a patient, slinks out of the room already mumbling about another patient.

“Terry. Are you okay, you seem like you’re angry by this.” I ask.

“Fuck no.” He turns his head outside. “It ends quickly doesn’t it. Strange to think it turns out

this way. Well, let’s get going.”

It’s stuffy on the ward, I get Terry up for a shower and we go downstairs in the sun for a little

while. He sips a coke, we talk. He is the kind of man who never talked much in the first place, but we do

talk a little. He was telling me what this neighborhood was like thirty years, the places in the city that

he used to live in and the names of the uptown stores along the boulevards. Not bad for a man who is listed as “diminished mental capacity.”

Terry winds up having a petite mal (a small seizure) on the patio, it lasts for a few seconds, and

then it’s over. I don’t know what to make of them. More signs and symptoms of a very hard life, too

much booze, the medication? I try to get past Terry’s reserve, but we don’t. He just appreciates being

out here to feel the cool breezes and watch the city, however, he can’t manage to sit up for more than an hour. I value the time with him, here out on the patio, removed from the ward, yet within the shadows of the hospital.

Zeke, is a new arrival, a six foot four man with long grey hair with a large bushy beard who

reminds me of another hippy I knew, who would have drank himself to death, if he hadn’t killed

himself in a fire started by smoking in bed. There are too many dead and dying people in my life.

Zeke’s story is about being putting into jail by his family, living in warehouses, heroin, then

drifting from place to place, living in Central Park, finally hooking up with a city agency that got him an apartment overlooking the park.

He said, “This is the nicest place I’ve ever lived in. What a way to go out, living on the 23rd

floor, high above the noise and craziness of the city.”

Jack later said, “I’ve never met anyone so angry in their life.” At group therapy, run by Jean

Pierre, after Zeke spoke no one else said a word for five minutes, apparently blown away by a

screaming rage that almost lead to a Psychiatric Emergency being called. Jean Pierre skipped the next

few weeks of therapy, and Zeke was informed, “It would be better if you had therapy on a one on one basis.”

Red is back on the floor, hitting people up for money, then denying it. He spins the story about

not having any money and a few generous hands come forward.

Jack leaves for another floor and I go with him to his new digs. He’ll be there for at least six

months until they find him a place. “This place is fine, my crazy wife won’t be calling me for money to do this or that. If I can just get a little time to get better I’ll be okay.”

THE ESCAPE:

Roberto, a forty year old Puerto Rican, has little handmade notes from his eight year old

daughter scattered around his room. It’s a note with a child and a smiling face, when you open the card

it says, “Daddy come home soon, I miss you.” Another card on the walls says, “Daddy get well.” His

wife, Ann, visits almost every day. There is a consistency of love that is absent in so many of the men’s

lives: a wife and daughter who want him home, and a great NA (Narcotics Anonymous) support system that is helping him to stay clean.

Yesterday, I went into his room and call out, “Hey Rob, you look like you had a long night.”

Then I adjusted the windows to open the blinds a little wider, I turned around to look at him once more. He was dead, very peacefully so, he hadn’t struggled. His death was the kind that everyone

dreams of. I closed his eyelids and wished him well in his next life. Was he listed as a DNR (Do not

resuscitate) or was he supposed to be brought back to life? There was no doubt in my mind, he had

made a clean escape. If there is a soul, this one was already half way to the other side. I walked out to

the desk and informed Katey, “Roberto has left.” Sometimes even I can be a little too delicate.

“What do you mean he left?”

“He’s dead.”

In a few minutes she raced through his chart and didn’t see the documentation for a “No Code”.

Within five minutes a swarm of overeager interns and residents flock to Roberto’s bedside like

vultures to a roadkill, their pulses are bounding and their eyes have a strange gleam. “A patient to

resuscitate!” calls out one. One says to another, “We had another junkie last week who coded and we

brought him back.” people.

I feel like I’m at a convention of young Dr. Frankensteins convoked to bring back the deadest of If I had known that they would have done this I wouldn’t have said a word. I would have made

my rounds, pretended that I didn’t see a thing, and given Roberto an extra fifteen minutes to make it to the fence. That will be my new rule of thumb, if I see someone gone who is end-stage and dead like

Roberto, I’ll wait for at least fifteen minutes.

It’s ten minutes since they called the code, now there are thirteen people at his bedside, trying

to bring a corpse back to life. In the middle of this gross stupidity, there is almost something funny

about watching this scene of the zealous young Dr. Frankensteins stabbing epinephrine into his chest, and trying to jump start his heart with electric paddles. With each jolt to his body, I hear a faintly

audible volley of “ooohs” through this crowd of interns and residents. They stuff tubes down his throat to create an airway and out of the corner I can see that the EEG is not picking up any brain-waves.

Father Joe, dressed in black, comes by in the hallway, looks in, and makes a sign of the cross to bless

this mess. Oh, please Father Joe, can we get the living to stop bothering the dead? The movies have it all wrong, it’s not the dead who bother the living, but the living who create problems for the dead. In

fifteen minutes Roberto is being wheeled down to the Intensive Care Unit, still dead. These goddamn doctors have more tubes connected to him that he has orifices. Two hours late I call and his brains

waves are virtually flat. He’s dead. Five hours later I called in the hopes that they would have

disconnected him, but they haven’t. I’m disgusted. They will probably keep him on respirators and such until his wife or someone decides this isn’t such a good idea.

This is the heart of darkness. Having looked into our souls, seen the black bile pit of our fears,

we are compelled to fight against death, as merciful and just as it can be, we fight against it, even when it is so inevitable.

In a moment of reflection, I understand why I fear for these interns and residents, it seems that

they have so little chance to escape from that mentality of “Medicine Uber Alles”.

George Lake is back. I had all these hopes for him, but there is some kind of recurrent

esophageal stricture which continues to close his throat, he can hardly swallow saliva, let alone food, but he is still strong and healthy. We say hello and I say to him, “Why in the hell are you back here

bothering me, man? I don’t have time to play with you. Wait, I get it, your old lady threw you out of the house and you needed a place to slum for awhile. Right?”

He says, “Go fuck yourself.”

With that, we shake hands and laugh. It’s almost good to see him again, but it isn’t.

I never want to see any of the men once they leave here I want to see them leave a little

healthier than when they came in and would like to believe that they will stay well.

I think he’ll make it. No, I want him to make it. More than likely, as with the other guys who

have come back three and four times, he’ll return. One day he will be too sick to talk. One day I’ll come into the room, like I have with Roberto, and he’ll be dead.

I hear a very tiny voice, which is barely perceptible whisper, “Professional distance.”

Terry is still here, losing weight rapidly, ten pounds this week. When I’m on, he is out of bed. I

asked him if people were getting him out of bed, he said with a slight smile, “No, I’ve been languishing here.”

Terry and I go outside for a half hour or so, we wheel around the block, sit out in the sun and

sometimes talk, but most times we sit quietly on a small terrace that overlooks the busy avenue.

Today, he tells me a little about the neighborhood and the streets from when he was a kid. Though Terry is only a couple of years older than I am, he looks like he could be at least fifteen years older,

easily.

13 June Abdul Kareem, a Lebanese man who speaks five or six languages came in for a hickman

catheter (an indwelling intravenous line which allows for long term I.V. therapy). We converse in

French and I value this rare moment of stimulation. I’m drawn to him as the other nurses move away. I appreciate his humor and his articulateness.

Nina, the nurse who is taking care of Gene, sets up the tray in front of him and commands him

to eat. However, Gene is disoriented and too weak to help himself, after she walks away he sits there for awhile staring at his tray. Abdul feeds him spoonful by spoonful.

14 June

BURNED OUT

Days go by without writing about the Alley or the guys. I don’t want to hear about them or their

stories. They become people who need things done to them, people who are placing another demand on me when I have neither the time nor the energy to do so.

Terry is incontinent and has chest tubes in him. When they did a lung biopsy on him last week

the resident missed and punctured his lung, which caused it to collapse. Now, Terry has to contend with these tubes. I don't have the energy nor the time he needs. I feel as if I walk through the day anesthetized, interacting in a superficial and detached way.

I hear Julio coughing. He has full blown pan-resistant TB. I avoid him, I don’t want to deal with

him, but I force myself to see him and to interact with him. Several weeks ago it didn’t used to be that way. Once I made the effort to talk with the guys and listen to their stories, now I have neither the energy nor the inclination. Slowly, I’m getting burned out.

One of the key reasons for the burn out is that I haven’t been doing co-counseling for several

weeks and so a lot of the emotional stress of working with these patients continues to build up. The strain is enormous: young people who come in and in a few days they're dead; seeing a patient that

you've worked with for several months and he’s dying; dealing with a disease where there is no cure and little chance of a truce.

In the process of dying some part of me also goes with that person. I need time for renewal and

nurturance. I need the time where I can be strengthened and revitalized, but there is no mechanism for it here, there are no support groups or counselors to help the staff. While I try to keep some vain

degree of distance, I can't.

I’m forcing myself to interact with the patients, though my knees hurt and I don’t have the

energy, I need to make that extra effort to walk around a little more and become involved with people.

I refuse to give into my fatigue, but realize the folly in fighting against it.

I work with Inita and Lillia. Inita is an African American nurse’s aid in her late forties. We don’t

say a lot to each other, but we work very well together. If a set of vital signs needs to be taken, one will do it, and then a return favor will be given. If someone needs help, there is no asking, you just do it. It’s

almost relaxing to work with people who have done this work for decades, there is little fuss or commotion.

Xavier is a new patient, IVDA, and at 7:15 in the morning is screaming at me to lower his

bedside stand and to do this and that. Am I calm and compassionate? Hell no! “Xavier, good morning, it’s obvious you woke up on the wrong side of the bed. First, you do not yell at me. Second, I am not your slave.”

He looks suddenly surprised and says, “I’m sorry, can you help me with getting my breakfast

together?”

“Yes.” And I help.

That was fifteen minutes into the shift. Uh oh, today is going to be a pain, but the day does calm

down a little. The night staff has been sleeping a lot and so by the time I get there in the morning the

guys are angry that they’ve been ignored. There is nothing I can do. But if they want they can call the Patient Representative and if that doesn’t work call the administration.

Abdul has been here for two and a half weeks waiting for a simple procedure that could have

taken perhaps an hour. The thing these guys have the least of, time, is squandered. The attitude is that the guys can wait. If they need a test it doesn’t matter if it’s done today or tomorrow; it doesn’t matter

that they’re kept without fluids for twenty-four hours while they’re waiting for a test; and it doesn’t

matter that they have diarrhea for two or three days. After all, they are patients. The root of the word “patient” is “to suffer.”

Jorge has had diarrhea for several days and they haven’t been treating it. The doctors say

they’re waiting for the lab results, but when I check on it the specimen was never sent. I get the intern to give him something for the diarrhea, after the problem has been ignored for three days.

As I am writing this, I am beginning to understand why I’m so fried. There is a cavalier attitude

here towards the patients, they are too often treated as if they’re nothing more than glorified guinea

pigs for the interns and residents. It’s a tribute to the patient’s resilience that they survive the interns and residents’ tour of duty. The other day, Dr. Ho ordered a test and couldn’t explain why he had

ordered it for that patient, it was just part of the protocol. It’s fortunate that the basic elements of AIDS

care is pretty much cookbook by now: when someone has PCP then you give them this, if they have a blood infection then you give them this, etc... . This helps to lower the patient mortality significantly.

You get the sense that the interns and residents who come here are anxious to do their thirty

days of tour and move on to the next step of their training. For many, this is nothing more than a

glorified toilet stop on their way to a nice office practice on Park Avenue. Even the physician who is

supposed to be in charge of this mess, Dr. Gold, comes in at infrequent and odd hours, and is involved in the most superficial of ways with the patients. One patient asked her about his treatment and she said to him, “How am I supposed to know, go talk to the intern.”

In the middle of the day transcribing my notes, I’m starting to cry. Tears come so readily and

now I know why I have been so cold and distant, I feel a sadness that reaches down to the core of my

bones. I can’t make a bit of sense of any of this suffering. There are a million goddamn tears that I feel as I walk through this ward. Yet, my eyes are often dry till I am alone, and then I have no need to be

cheery and bright, no need to be Mr. Sunshine, and then like the clown when off stage -- I cry. This

disease is tearing me apart. I see these people dying all around me, like it’s some kind of goddamn

battlefield. I come into a room and this thirty-eight year old guy is dead. What kind of insanity is this?

better.

A good cry does wonders for the soul, not a damn thing for the guys, but it sure made me feel

18 June Lou says, “I had 3 cars, four women, all quality. You want to know about quality, man? Quality

is a rock of pure uncut coke, squeezing it all night.” He is handsome, seductive, and rapaciously

intelligent. His dark eyes become animated as he spins his story. “People want to buy from me because I represent quality.”

Quality, huh? Thirty-four and he is in the first hours of end- stage AIDS. Quality?

I sense an evil that makes my skin crawl, then realize, at one time I could easily have been him

and become enamored with that roller coasting looping reality of drug addiction. I talk about quality of

life, he talks about the quality of drugs, he talks about pure grams of coke, and a brain cell in the back of my head lights up like a Christmas tree. I sense his powers of seduction as he weaves his web and I am

drawn in to his world, “I ran three households, three cars, a Rolls, and women working for me, four and

more if I wanted it. But I only want a certain kind of woman working for me. I want them to understand what I represent -- quality.”

His eyes are tearing. Does he realize the chaos in his conversation? It's like watching a pinball

rolling around the bumpers and lighting each light. He is testing me, seeing if I get high, and testing his boundaries. I feel as if I walked into the office of a shrink. I ask questions about how he is dealing with

being end-stage AIDS and he is trying to find that “angle.” Can he play me? How far can he play me? Do

I get high? How can I help him to stay with his addiction? The web is spinning and spinning, he keeps putting out threads to try and see which one I will fall in to. I walk away, he is still spinning and entangled in his weavings and machinations.

20 June

The IV nurse was talking to me about why Terry is getting chemotherapy. “It’s not that he’s

necessarily going to get better, but since they do use this as a teaching facility, it’ll enable the new

group of residents and interns to be trained.”

“But he’s end-stage aids, there can’t be any benefit from him undergoing treatment, right?”

“Little gain is anticipated, however, if he should show some signs of improvement, or that there

is any kind of alteration in his HIV status then it might be worthwhile, but you’re right, there is no

benefit for him at this point and there isn’t a hell of a lot that can be done for him.”

Leon has been here once before, he says to me this morning. “The things that used to get me

upset, the things that used to occupy my mind are the things I can’t be spending time on any more. I

don’t have the time. I only have the time to get and stay well. Before I might have read the Wall Street

Journal, instead of looking at a flower or how beautiful the color red is. These are the things that I need to be spending time on, not the anger, not the holding on or any of that other stuff, the time is too important.”

Leon is strong, he has a good year or more, he says, “I take real good care of myself, I exercise, I

spend time watching my niece and nephew and enjoy playing with them. Before I couldn’t be bothered, but now it’s okay.”

Lou, who I met yesterday, is an addict, which I knew, but he is also a street person who spent

last winter on the streets. Was it all bullshit about his fast and free lifestyle? In large part it was a fable, a plea to believe that he was a person of substance and power, instead of a street junkie who couldn’t

control the course of his life.

I’m exhausted, unable to sleep well last night, coasting through the morning. The energy that I

had several months ago has abated. I haven’t been able to keep myself at a very high level of

performance. The work environment here is crippling, it encourages people to work at a minimal

level. The greater amount of time is spent at the nurses’ station socializing than interacting with the

patients. Next year I’ll go back to develop retreat programs for AIDS worker. The time here has given

me new insight in how to create the kinds of support systems and environments which can maintain a

high motivation and low burnout. We need to create the kinds of environments that will allow patients to return to their optimal health and enable HCW to survive and perhaps, thrive.

July l993

Terry is dying, yet they gave him four units of blood this morning. I know all the rationale

behind it, however, he is dying. There is no point in this.

When I first met Terry he told me that he had no relatives, however, the other day I pick up the

phone in Terry’s room and it’s his brother. Brother? Not only a brother, but a mother and other family

members want to see him. They haven’t heard from him in months and today he refuses to see them. “I

don’t want to see them or anybody.”

I bargain with him; unjustly, I try to manipulate him. “Terry, I’ve been helping you for these

past few months or so, and to be plain, I’ve done you a lot of favors. I need one from you. I want you to

at least see your family. Just say hello and then if you want them to leave, that’s fine. This may be your last chance to make a peace with them.”

His mother comes in, an elderly woman in her late seventies leaning on a cane, his brother

remains in the hallway as does a niece. He doesn’t want to see his brother under any circumstance. His

mother spends a half-hour with him, helping him with his lunch, feeding him when he became too

tired.

Afterwards, he sleeps, his respirations which have been labored, are slower and calmer.

I talk to the family afterwards and there are conflicting pieces of the puzzle. They say Terry had

visited his mother every month up until six months ago, but he’s been here longer. The intern comes in and the brother takes him aside and tries to pump information out of him. The intern tells him that

Terry has cancer, which is partially true. Terry said, “I don’t want anyone to know what I have.” But

the brother seems angry and bitter, though one part of him is concerned, he really seems like he wants

to be a hundred miles away from here.

These are the things which are draining, the healing of the family ties. This is the last chance

for this family to make peace with one another.

I go out for a cup of coffee and take orders from the guys. Lonny says, “I want a pineapple

sundae with cherries and walnuts.” When I return he devours it with slow delight and says, “This is better than any medicine that they give here.”

Today I freaked out and yelled at Matthew, a white junkie, who prior to admission was still

doing coke, and who has active TB. He’s sitting out in the lounge, smoking a cigarette, with his mask

dangling off of one ear.

I said, “I have fifteen other guys on this ward, who have a slight chance of pushing their lives

back a little further, who have that chance to live and I don’t want anybody to take that chance away.

So you wear your fucking mask when you’re not in your room!”

Calmed downed later, I apologize to him. The truth of the matter is that probably more than

half of them have TB and I wouldn’t be surprised if I wound up with it either. Fatalistic, yes, and today, sad. I leave the ward today and I feel like crying, I’m tired and feel the hopelessness. Two guys that I

worked with today will be dead by the end of the week and another one dead will be dead within a few weeks.

I’m taking their death as some kind of personal affront. As if I had a say in the matter as to their

life and death. You try to maintain a strong heart and even cheerful. Jason Cliff is back on the floor, tall

and even thinner since the last time I saw him. He said yesterday, “You’re always so cheerful when you come in. And I like that, so many others are cool, detached.”

Good bluff on my part, huh? I wish I was detached and could walk through this ward without

any care or oblivious to it all. But whether we like it or not, nurses, the care-givers of the dying are like

Charon, the god who ferries the dead souls across the river Styx. Perhaps the god who would be best suited for here would be one called - Steadfast. If I could represent one human attribute or side of

courage it would be Steadfast: Resolute in the face of a hurricane of shifting emotions: Calm when all

seems chaotic: And filled with faith when there is little to believe in. That kind of calm, clear-eyed courage that is so rare and distant.

Faith. I need to discover the faith in myself which somehow seems to have gotten misplaced

this past weekend.

3 August

“Pancho: l941-l992. Cause of death – AIDS”

Pancho died this morning, fifty-one and battered, soul down beaten, lymphoma, and end-stage

AIDS. Without distress he simply died. The porter called me over and said, “Can you look at Pancho?

He don’t look too good?”

I go into the room and he’s dead. I close his eyes. I’m quiet and calm, grateful that this man’s

pain is at an end. Two new interns come in and look at him, then at me, and ask in unison, “What’s

wrong with him?”

I look at them and start to laugh. “Uh, he’s dead.”

“What do you want us to do?”

“I don’t think there is a lot you can do for him.”

They turn and leave, after consultation with one another and another nurse on the floor they

decide to call a code. Same as before, swarms of interns and residents descend on the unit. Leon is

watching and said later, “They had fifteen doctors in that tiny room.” This time instead of wheeling a corpse down to the Intensive Care Unit they let him go after fifteen minutes.

When I came in after the code was over, I flipped out. I couldn’t believe they left this guy buck

naked, without sheets, tubes dangling out of his mouth, chest patches on him, and looking as if he had been rolled. I asked the resident, “What if his family had come in and seen him like that?”

I was also angry because of the disrespect to him as a person. There was no appreciation of him

as a human being, no appreciation for him as a person worthy of dignity and respect, he was by

implication a “piece of meat” in their eyes. I know he’s a junkie and that many people would question

the value of such a life, however, that doesn’t change his fundamental dignity as a person. I take off the

tubes and wires from the code and wash him. His feet are placed one on top of the other and his hands are folded across his chest. I notice the scars from old track marks against his yellowed skin. Beneath my hands I feel a body that wore pain as often as it wore a shirt. Now, this body is being tagged: one

card attached to the toe says “Name...SSN...DOB”; and another card with his possessions -- a plastic bag

of trousers, shirts, dentures, slippers, and a cane. His body is placed in a long white plastic body bag

and it is zipped, on the outside is another card with his “Name...SSN...DOB.” Then the body is placed on

a gurney. The doors and curtains on the ward are drawn and when all are sealed, the white sheeted

gurney is quickly and quietly rolled away. The elevator is called and I wheel the body in. The Elevator Attendant is visibly uncomfortable, he starts to rock a little in his seat, as if he is trying to get the elevator to move faster, and he is visibly relieved to see the stretcher leave.

In the basement of the hospital, black porters scrub the wet grey concrete floors, and huge

steam pipes run overhead. Here is the belly of this beast, like walking into the viscera of a whale and seeing all its integuments and sinews, naked and vulnerable. A priest in black looks at the white sheeted stretcher and crosses himself. A ward secretary and a hospital electrician walk by and

disappear into his office for lunch, maybe their “lunch break interlude” will add one life? I wheel the

gurney to the end of the corridor and reach the narrow alleyway that leads to the morgue. The door is painted black with a tiny glass screen window, the buzzer is pushed, and the gurney is wheeled in.

The morgue attendant looks at me and asks, “Where are you from?”

“Twenty North.”

“Yes, of course, I should have known.”

The room is brightly lit with neon lights, it smells curious, maybe formaldehyde and other

chemicals that I can’t place. No, I can, they are the smells of the dead, the slight trace of decay, and the

deodorizers and antiseptics which vainly try to mask it. The walls are a motley colour of blue and

brown tiles, as if they were selected someone who was color blind and aesthetically dyslexic. To the

right are nine stainless steel refrigerator cubicles, that look like the storage cubicles at train stations, lockers with numbers. On the left is a grey desk with a green ledger. I sign Pancho in, as if I was registering him for a hotel: name, date of birth, SSN, time of arrival and... cause of death.

“AIDS”.

Cause of death? Too many drugs? Too much poverty? Lack of hope? Loneliness? I write, Then I help the attendant slide the steel morgue tray out of the refrigerator. Out of curiosity I

want to see if there is a safety catch inside, in case you decide you were into resurrections or wanted another chance, but there is no inside catch, once inside it’s over. We load Pancho onto the Morgue tray and then slide him into the refrigerator cubicle.

“Pancho____ l941-l992. Cause of death – AIDS”

ZEKE AND LEON:

They’re sitting in the front smoking lounge. Zeke says, “I can’t stand when someone asks me

“How are you?” Do you want to really know how I am? I’m dying, that’s how I am!”

Leon laughs and responds, “Or people going on about AIDS. Sometimes when people are

talking to me about it I remember. “Oh, yeah, I have AIDS.” When you think about it and obsess that

you have it, that’s what gets you sick and crazy, people think too much about it. I have AIDS, so what?”

Zeke says, “That’s why I want to get away from this place, everybody is talking about this thing.

Shit, I want to be in a place where people don’t know about it, where I don’t see another person with it.

I see these people falling over and sick and I know I got to get out of here. Too many sick people.”

This AIDS ward, needs to move away from thinking of itself in the traditional mindset that AIDS

is a medical condition. It is and it isn’t. If any disease cried out for a holistic approach, AIDS would be on the top of the list. AIDS is far more than cells and molecules being devoured by viruses, it is the viruses of hopelessness and loneliness that also kills. AIDS speaks volumes about the questions of faith and

community, the two things most sorely missing now. Not the faith which so often passes for religion,

but this faith is much deeper, it is the faith of self, the trust and awareness of one’s own being and the acceptance of it.

Monday, cool august comes rolling in and the surf is up. Fire hydrants are open and the dogs

are howling. Green leafed reveries implode in the still heavy breathing of summer.

8 August

CALLING DEATH:

A young neurologist visits the unit and wants to run some tests on Terry, who is maybe a few

days away from dying.

“We’re thinking about running CAT scans, a liver biopsy, and a lung scans. You’re his Primary

Nurse, what do you think?”

My first instinct is to say, “I think you’ve lost your mind! This guy is dying, look at him, a five

year old could tell you he was dying!”

However, after taking a deep breath and counting to ten, “You know of course that he’s dying.

He only has a few days left and I’m sure that he wouldn’t want aggressive treatment, it’s best if we let him die in peace.”

I was shocked when he agreed. It’s a relief for once to have the feeling that what I’m saying

does make a difference in this equation.

Two days ago Terry was saying how close he is to death. By the looks of him, he could have

hung in there for another year or so, but he when his mother phoned he said, “I’m dying, I’m in terrible shape and I want to see you.”

Do we call Death sometimes and ask it to move closer? Not always on our terms, but in

whatever terms it may offer. Three days ago, Death was nowhere near him, today it is very close. It’s

waiting and watching. I don’t feel as if there is anything more I can say or do. It’s time.

A friend of his visits, maybe an old girlfriend. She brings a small basket of fruit for him, she

smiles and strokes his forehead and says, “Hello, Terry.”

Her hands are those of someone who scrubs floors for a living, not the machine kind of

scrubbing, but down on her hands and knees with a stiff bristled brush. She caresses his face and calls his name again, but he doesn’t respond, he slipped away into a coma early this morning.

14 August

Joel, a fifty year old white bisexual who belongs to a New Age religious community is brought

to the floor, he is well-educated and articulate, and has a certain savoir faire.

Joel has PCP, his immune system has taken a beating over the past few years, he’s short of

breath, and usually fatigued, but when he’s awake his mind is keen and his senses are alert. One bed

over is a street person who has a long history of drug abuse, in another bed is a gay Panamanian, and

then there is Joel. It’s a strange paradox where we end up in life and who we spend the time with. I find it much easier to work with him, his emotions are open, and he doesn’t seem clouded with a lot of

fears. With many of the men it takes a long time to reach the point where they’re up front enough to

work with. We skip through a lot of the basics and get right to the main issues: dying, living, making a peace with the past, etc., the usual range of human concerns, suddenly very focused.

I sit by his bedside and read him poems by Hayden Carruth: poems of friendship, love, lust, and

so forth. He likes them. Hayden would appreciate that his poems are so well received.

1 September

I’ve been off for two weeks and it was eerie when I got back, I didn’t know any of the faces.

Normally, I know everyone well. For a week I was off balance -- they were like strangers, until this week when some of my regular clients started returning.

Marco, my once burly, and funny friend is now about one hundred pounds, his body is

emaciated and the bones of his skull are clearly outlined. He asked for a Pepsi, I went downstairs to the second floor and bought him a Coca-Cola. I feel good about having made the effort and when I give it to him he refuses, “I want a Pepsi, man. Not a coke!” And with that he kind of gasps and falls asleep.

This would make an incredible advertisement for Pepsi, a dying man is refusing a coke,

because it isn’t Pepsi. Can I scream now? His mother comes in, she is a bent over wisp of a woman who cries endlessly, she can’t understand why her son is dying. There is the word “AIDS” but there is little

understanding of what that means.

I take a lunch break and outside Franky is waiting for a bus. He asks me to get him a cream

donut from the shop across the street, because he is too weak to walk that far. When I come back we sit and have coffee and donuts and talk until his ride comes.

Today I got the chance to spend real quality time with Al who has been homeless for fourteen

months. We had one of those good special days together, lots of warmth and closeness. They want to discharge him, but nobody had bothered asking him or finding out that he lives on the third floor of a

SRO hotel. Though discharge was imminent I said, “Wait just a minute folks, the man can’t even get up and go to the bathroom without a little help.”

They agree to wait until they can find him a place that he can go to, a place where he doesn’t

have to walk up a flight of stairs.

Zeke said this about AIDS, “It is a monster that sucks all the life, all the joy out of me. Every day

that I can’t get up and walk, that monster inside of me is stronger, cause it’s eaten a little bit more from

my soul. I sense and feel it inside of me. Every day that it gets stronger, I get weaker. Pills and the other things they give me, make it a little weaker, but it’s still there, stronger. And me, I’m unable to keep

fighting it, unable to keep up the front, the only thing I can do is to keep walking one step at a time.”

2 September

SET ADRIFT

The boats lie in harbor, sleek young vessels resting near the battered sea worn ships, at rest or

waiting for the pull of the open sea. The mooring lines snap and tug taut at the first stiff wind until one boat finally sails free. Suddenly, another is caught in a wind storm, not lashed securely enough to the dock, gradually it is scraped by the rocky bottom and low tide, the persistent wearing away, till the

lines are so frayed and the hull battered, it doesn’t sail away, but slowly sinks. I sit on the docks rooted

to the shore and watch the ships in harbor; I wonder which one will stay and who will leave. I have no control nor voice over it. No matter how tight I draw the mooring lines or how close I drop anchor in

the sheltered part of the bay it does no good. This is a bay too unsheltered from the squalls, it is almost

as vulnerable as being out in the open waters. I think there is safety because we can see and touch the shore, but there is none. The storm and winds will take what they want, act to their own caprice with

little regard for how sleek or well built each boat is. There is a queer order to these things of chance and fate. A queer randomness to what is decided in a life, the way we live and the way we die.

We of these cities who know much about fortresses and safety, who know how to build towers

high into the clouds, think that our acts of faith and rationality can conquer even the course of winds.

But we can’t. I hold more faith and certainty in the course of the winds and tides than I do in the will of human spirit. We confront and face each other, we arbitrate and negotiate, we offer sacrifices to the

gods, we offer our first born and maybe even our second child, but it makes little difference. It makes

so little difference our negotiations with the gods. They take what they will, we sit on the sidelines and watch, as much as a victim to it all as the next person.

I am exhausted by this work with the dying, each nuance of prayer and faith, each absurd plea

for more time only leaves me exhausted. Over the past few months I’ve become numb and did not know it. Many feelings that I used to feel, I can no longer.

When I was younger I could run a five minute mile, but now I can’t work for a full day on the

Alley without my knees being swollen and in pain. In the change from fast to slow, from young to older, I know what I have lost, the question is, “What if anything have I gained?” and “What will I surrender?”

Am I even willing to surrender? This is what has been haunting me for the better part of several

weeks. When I could not write about the men or their condition, I could not write about many of the feelings because mine have become so dull, so swollen with pain.

There is no redemption here, no small victories to claim, no truce, even the little time that is

bought seems like a fraud. Another lie.

Smith who came in the other day disoriented and babbling, now is walking around getting

stronger. I know he will be dead in six months, but I tell him, “You’re looking too damn healthy to be

here! Get the hell out of here so I can deal with some sick people.” He looks startled, not sure whether

I’m joking or not, neither am I, and he looks at me for a moment and laughs. Damn! I hate the life here

on the Alley. I hate the lies, the hopes, and the promises. I hate my good intentions and my fraudulent intentions. I hate the hypocrisy, and the mountain of hopes that are made and destroyed every day, I

hate that the most. The most that I can do is maybe make someone laugh a little, make them a bit more comfortable, and perhaps even help them gain a gram more of time. The fate of Man is his continual

negotiation with the gods -- if this, then that, if this then.... And as for myself, I may speak of surrender

of a blissful bodhisattva state, but I don’t surrender a damn thing: Never have and never will. Yet, I

keep finding myself, more times than not, engaged in asking for a truce, one chance, an oasis, a kind of Brigadoon enchantment where we are no longer captive, no longer caught on the karmic wheel. I ask

for a truce so that I can figure a way to win and beat the odds. Though the play of life and death on the

Alley is a cosmic tragedy worthy of Aristophanes’ attention, I find it leaves me numb, with less and less to say, and more bewildered all the time.

Who can figure out any of it? Ashe has AIDS, another few men die on the alley, I cry and can’t

make a wit of sense of it. I laugh and joke and only hear my hollow whistling in the dark; hopeful that

the whistling will dispel the evil, instead of calling it nearer. I pray and chant out loud, but I only hear the sharp crack and roar of the wind whipping around my ears.

Maybe a new prayer needs to be offered, a new incantation, hell maybe even a new way to cast

out the darkness, a voice which speaks to the myriad of questions which beg to be answered -- Give me this day! Give me this moment! Let this hour be for loving and this life, even as brief as it is, may it be delicious and full. Give me this day. Now!

I work slowly from one end of the ward to the other. I breathe and appreciate the miracle of a

life before my eyes. I find my strength and put aside my doubts. I put aside my anger and rage, and hold the hands of the dying without regret.

The boat tugs on the mooring lines, I raise the sails, lash the rudder tight, and when that good

strong wind from the south comes... I let the wind do what it will and I will do what I can. No compromises, no sacrifices, no quarter given, and no surrender.

9 September MIGUEL:

Marco’s son, Miguel, is sixteen years old. His father is dying, his mother gone, disappeared.

Miguel said, “I was with her until I was about ten then I went back to my Dad. He was incredible, a big guy, someone who people respected. One time when some older guys hit me, he went over there and took them on. Three guys at once!”

When Marco first came here he was a solid one sixty-five and today, in early autumn, he is

around l00 pounds.

Miguel said, “I can’t stand to see him like that. Skinny and wasting. Why?” Why, continually

punctuates his sentences.

Today Marco is disoriented and a bit feisty, he can’t even tell you if it’s day or night. Miguel and

his grandmother are visiting, then he becomes frustrated with his father, furious that he’s lying there

dying, and like a teenager, Miguel explodes in anger and storms out of the room. He needs time to rage and scream at this stupidity -- AIDS, his father dying, his powerlessness to change it. I tell Rita I’m going for a walk.

Miguel and I go out for a pizza, he talks and I listen. I’m hearing someone who is lost and alone,

knowing that his father is going to die soon, but unwilling to accept that, unable to. His grandmother,

who was supposed to be taking care of him, is half senile. Three weeks ago they placed him in a foster home, but he kept running away to spend time with his father.

“I want to be with my dad. Why isn’t the medication working? I get so mad when they tell me

he is dying. I don’t want to hear that.”

I know he wanted me to say that his father was going to beat this thing, the same way that he

beat everything else in life, the way that he beat the guys who had hit his sons. He knows that his father is dying, but to hear it means that he would be alone with no one to protect him.

I feel responsible for this boy when there is no reason I should. I’m sitting here no wondering if

a friend of mine who runs a retreat center could use an extra hand. No, if I wanted to take him in it

should be my responsibility. He’ll be seventeen the day after my birthday next month. At seventeen not quite a man nor a boy, somewhere in between, in the vast wilderness that hungers for the contradiction of security and freedom.

We finish our pizza and soda, we talk some more, and maybe that is all I can offer him, a little

time and someone to talk with.

12 September

THE REVOLVING DOOR:

George Lake is still here. I say hello and when I look at him I can see that he’s very confused

and there is a drainage bag from a catheter attached to the side of his bed. I want to sit there and cry,

but that’s a luxury I don’t have. I’m going to lose George in a week or so and there isn’t a goddamn thing I can do about it. All I can do is to make him comfortable and hold his hand.

When he was first here he was holding the line, staying strong, and his attitude was positive.

He was talking about this town in South Carolina outside of Charleston where he had a small piece of land. It was part of his family’s holdings going back for generations and he planned to put a modular

home right in the middle of it, next to a huge tree with a hammock. “In that hammock I want to lie back

in the shade and just rock myself to sleep.” And I believed him! I really believed that he was going to

stay healthy and go down there. I feel betrayed and lied to, though I know there was nothing he could do about it.

At the end of the day yesterday, I spent the hour in Co-Counseling (therapy) crying from the

sheer futility of this work; the caring that you know there isn’t enough of, but knowing that’s all you

have.

Another “regular” comes in today, Pablo Smith, who has a staph infection of his hickman

catheter. He occupies the same bed as before. There is a small defeat in his return, my hopes were so

high when he left. There is this whistling in the dark kind of attitude that if we look straight ahead we’ll miss things that we don’t want to see, like the faces of the people we love and care for coming back again.

Abdul Kareem, the Lebanese man, is also back fighting an unknown bacterial infection. Tests

are performed, blood cultures, x-rays, educated and uneducated guess are formulated, and he still has

temperatures that rise and fall with the unpredictability of a monsoon tide. No clues, so they choose a

couple of different kinds of antibiotics and zing him with it, in the hopes that it will cure him. It is a slick and slippery road, the more antibiotics you give the weaker the immune system becomes in the long

run, but there aren’t a lot of other choices available. There are small things we can do to heal, and it does happen, but it only buys a little more time. That’s all, a little more time.

Sunday morning, the streets of the city are almost deserted, the last days of summer, the

coolness fills the empty streets, several of them are closed off for the holidays, and even here on the

Alley there is a refreshing peacefulness. Marco is still fighting, when by all rights he should have been dead a month ago. Rita said, “He’s too angry and the family is holding on, he’ll be here for awhile longer.”

I make my rounds up the hallways, my Padre routine, the ‘hello how are you, the top of the day

to you, and can I help you get started with breakfast’ routine. Rita is at the desk and Lillia rolls in a short time later.

Nina brings in rolls and sandwiches. She sets the table and the four of us sit down for breakfast.

I’m wary of her fluctuating moods, but it’s very peaceful this morning. The ward is almost too quiet,

most of the men are asleep. Coffee, rolls, and an easy conversation -- a melange of Spanish and English.

Yesterday spoke with Tony. A story that is sounding too familiar: “Picked up when I was about

fourteen,” embarrassed a little and corrected himself, “... well before then. I lived over in the Fort

Williams area as a kid. There everything was available and you know, availability and an addictive

mind leaves you -- an addict.” He giggled at the insight -- drugs plus availability plus an addictive

personality equals addiction. “For the next twenty-five years or so whenever those feelings come

around, those feelings of not being good enough or if there is ...time ...then pick up time is right there.

When I got time on my hands I have a problem. Time and free money to spend. Jail was there too, not long time, or hard time -- time to kill in the “house.” Back out on the streets. It didn’t change until the

HIV and I saw people around me dying. Guys twenty-five and dying like old men. But me get it? Not a chance, I said. No it couldn’t happen to me. Though I always saw death around me I saw it as a step

away from me. No, it couldn’t happen to me, until I got pneumonia, the PCP, yeah. But if you got the PCP, you got the AIDS, right?”

Was he waiting me to contradict him and say, “No, it’s all been a mistake?”

He looks at me for a minute then out the window. “Now its six years off of the stuff, still an

addict, but I don’t pick up. I still get the itch when I walk by someone who is high, but I walk by. I don’t preach to people, I walk the walk, I don’t talk it.”

“How did I get sick ? I went up to Toronto for the NA World Convention (Narcotics

Anonymous).”

Father Joe came by and gave a cheery hello. He asked me, “Are you counseling him or is he

counseling you?”

A little bit of both, Padre.

On the ward, lots of those old strange feelings arise, the overwhelming sense of despair, that

somehow my efforts will make a difference. I'm overwhelmed by seeing these guys fighting for that

extra inch, sometimes making it, many times not. But there are others like Xavier, who is frequently stoned and virtually impossible to rouse because he’s so high. He’s standing by his bedside, eyes

closed, one arm is up in the arm, as if he’s pointing to someplace far away. What is he pointing to? The other side? Some mythic place of well being?

Joe Winslow, who has been sleeping all morning, refusing all treatments with the curt

response, “Don’t bother me I’m sleeping.” When he finally wakes up at noon, he glides past the Nurses

Station and says, “I’m going downstairs for a minute, you can make up my bed for me.”

“Yo, Joe just a minute. I’m here to help you get well not to be your servant.”

He cruises on by with the impatient urgency of a man needing to visiting his “pharmacist.”

I leave him a set of sheets on his bedside, if he’s well enough to go downstairs, he’s well enough

to make his own bed. The chutzpah of these guys sometimes, many are grateful, but a few need serious

social skills remediation.

Rita, appears throughout these pages. She is there in the background of the story, but ever

present. She whistles and cares, few interrupt her, this is her place. Yesterday, she was sad, I didn’t

have to ask, it was Marco and his slow wasting away that was causing the tears. But she doesn’t cry,

she keeps moving forward. Am I seeing a change as well, when I first came, she hardly spent “sit down

time” with the guys. Recently, I notice that she is more willing to do that, to sit and talk with the guys.

By being vulnerable and open to the guys, to sit down and listen to their stories and hopes, we

allow for that small precious island of humanness to exist.

Lana, the Caribbean nurse, remains at the desk, interacts with the patients only when she has

to. She is talking at Ross Turner like he’s JADN.

He said, “She comes in ordering me around me around, “Get into bed, and don’t give me any

back talk. Do you hear?””

I suggest the Patient Representative, which is probably a futile gesture, however, it’s better

than nothing at all.

Raul, the gay Black Panamanian is back. I don’t want to be culturally inappropriate, but I didn’t

realize there were so many gay black Panamanians, or should it be gay Panamanians who don’t practice safe-sex?

Marco died yesterday after I had left.

NATCHEZ:

Natchez strolls back on to the Alley. Discharged a few weeks ago he is back to pick up a

prescription (a legitimate one). He’s thirty-eight, but looks like he’s closer to forty-eight: tallow

complexion, a black beret and a short neat trimmed beard, he walks with a slight stoop and a long

steady stride. He comes back on the floor and I can’t believe him. He looks heavy, in fact, he has a pot belly! Not a big one, but a nice little round one. I pat it for a moment, maybe it will bring good luck.

This guy who couldn’t eat because he had ulcerations and so forth and was down to about one hundred and forty five pounds comes on the ward with a big grin, it’s a hard won, but wary grin. We stand in the hallway talking for a good long while, I want to find out how he did it... love? faith?

“It just wasn’t time. I saw my buddy Marco the other day and we weren’t that far apart in how

sick we were and when I saw him skinny and all wasted like that...I knew it could have been me. I tried talking to his mother and she kept saying to me “he’ll get better, he’ll get better.” Though I tried to tell her, she didn’t want to hear it. She only wanted to hear that he was going to get up and walk out of here.”

“Me what am I going to do? Back to PR in November, funny they don’t like New York Puerto

Ricans here, but I don’t give a god-damn, I’m going to stay with my sister for awhile. Some sun and

good food. Around Christmas time I’m going out to California to see my brother.”

I look into his eyes which have seen more pain and sorrow that I care to visit, but eyes that

clearly say - I know the score I’ve been there, you can’t fool me. “I know this is my last chance. Marco

had the same chance, but he didn’t take it. He figured it didn’t make any sense to keep fighting and let

himself go. He let go when he could have stayed. I’d like to stay and talk with you but I got places to go

to.” We shake hands and as he turned to leave he said, “By the way, thanks.”

Seeing Natchez made me feel solid and strong -- and that yes - me being here does make a

difference. The fight is not futile -- it works sometimes -- through whatever alchemy of faith, hope or

even luck there is an outside chance to move the line further back. There is a certain and very real

opportunity to beat AIDS, even if it is only a little more time, you beat it, a little bit, day by day. Miracles are made not by some cosmic sleight of hand, they’re made by putting one foot in front of the other and

keeping the faith.

Yesterday, walked around with a heavy sadness, my shoes felt like they were glued to the

ground. George Lake was incontinent, disoriented, had to be showered and changed several times.

Here is this forty-six year old man, with a strong healthy looking body, who is completely ga-ga: he can barely communicate, and even needs to be fed. Two months ago he was filling out his retirement

papers for the Post Office and planning on heading down South for his retirement and enjoying life with his wife.

He has a twenty-two year old son who is incarcerated in Maryland. A letter was written to the

warden of the prison, “George Lake, Samuel Lake’s father has AIDS and doesn’t have more than six

months to live. At this point his condition is deteriorating and he’ll be unable to communicate within a few weeks. Please be so kind as to allow him to visit his father.”

The son was never able to visit.

Then Franky is back for a visit to the Outpatient clinic, this frail looking guy has put on five

pounds. Folks, that is a victory! Gaining five pounds now is a big deal. We talk in the back room and though he’s still smoking it’s fine as long as he can keep the weight on...very fine.

It’s a balancing act trying not to get fried by the new guys who are still in denial about addiction

and the fact that they’re going to be dead in six months unless they do a major wake-up. “LAST

CHANCE” needs to be the sign across the hallway here. “Wake up time! No more chances after this.”

There is only so many times you can cheat Death. Death does not like to be cheated, he comes back with a vengeance. Trust me on this. This I know.

LEROY AND GEORGE LAKE:

George is asleep when I come on this morning and he needs to be cleaned.

Later that afternoon his brother Leroy comes in, he virtually vibrates and reeks of addiction.

He picks up the phone and talks to a friend who called George. Leroy says “When I see him like this, I

know I can’t handle it, many times I’ve gotten on the bus to come here and have turned around. I know that the closer I came, the less that I needed to feel that feeling. You know what I mean? And when I turn around and catch the bus back up-town there is only one thing I got to do, only one way to deal with how I’m feeling. You know what I’m saying. But I’m here.”

We get George out of bed and I help Leroy set up a wash basin and stuff in the hallway so that

he can clean his brother’s finger nails.

Something interesting I saw in myself, I’ve been saying, “I don’t have any issues around racism

or dealing with African Americans, after all I’ve been around blacks all of my life, I have friends who are black, and I care for mostly black people...so I shouldn’t have any issues.” Right? Wrong. When I feel so

sure that I have no issues to resolve, a big yellow light ought to go off in my head. When I saw Leroy I

sensed my reluctance to put my arm around his shoulder, and comfort him, but of course I did. I told him that George was lucky to have a brother who took such good care of him. Leroy has the self-

esteem of a snail at this point, he feels absolutely awful about himself and the choices he’s made. He

doesn’t even have a quarter for a telephone call. The healing work today expands to him as well. There is no clear boundaries of who one heals. It’s all fair game.

This healing work is not just to those who are physically ill, but emotionally and spiritually as

well. Each person can be a positive force for healing, no matter what their trade or occupation. It’s easier to see the healing work in a hospital or clinic setting, but there is enormous opportunity for

healing work in all quarters. Healing is very different than most people imagine - - Healing at its core is life affirming.

Each step you take, every day you are alive and feel good, that is an affirmation. We need to

create affirmation for ourselves and the world around us. In our affirmation of well-being we deny AIDS right to exist within us.

Leroy spends about an hour cleaning and cutting his brothers finger nails. I wish I had a

picture of that, these two men in the hallway, one suffering from AIDS dementia and the younger

brother facing him, patiently cleaning the feces from under his finger nails and washing his hands.

That is a portrait of love I wish I could always hold in front of my eyes. Not a lot of words were said, but Tony said yesterday, “When you walk the walk then you’re doing it, otherwise it’s only talk.”

There was a man who was on the ward several weeks ago, his name was Arturo. He was

healthy and getting better and suddenly he died. His wife Maria came by today. I didn’t know her well and had trouble placing her. I saw immediately she had lost someone that she loved very much. I said “I’m sorry, God bless you.” There is little that I could say or offer, except what I had already done for him.

October FAITH: PRAYER: AND A FREIGHTER LOAD OF QUESTIONS:

I watch Larry who has end-stage AIDS and renal failure. He’s still hanging in and doing a little

bit of walking, but by and large, there isn’t a lot of time left. The doctors are willing to do the lab work,

give him blood, and oxygen but he refuses. He wants to get out of the hospital. He doesn’t want to talk to anybody about it, “Leave me be!” he screams. It’s not surrender, it’s denial: he denies that he’s sick

and dying, and so can deny that there aren’t many more chances. By denying that this is the end, he can

pretend this isn’t happening to him. He’s frightened and terrified. I don’t challenge or confront his surly attitude, I have neither the strength nor the inclination to challenge the lie that he’s offering. Somedays

you get complacent and lazy and don’t challenge the guys. You need to have the feeling that there is some hope, some inkling of a peace that could be made. I don’t have that feeling with Larry, my cynicism and despair are coming back to haunt me.

GEORGE:

His ten year old daughter Aisha, comes in, with bright eyes and the skipping laughter of a child.

She knows that in one of these rooms will be her daddy. Will it be the daddy of yesterday or the one

she saw recently who said nothing, he was only able to look at her. Her hopes as high as only a child

can allow, hopes that say, if I believe and think it’s true it may happen.

She walks through the door holding her mother’s hand, with a picture of herself, and George

looks up. There is maybe a spark of recognition and he can say her name. But the memory of who she is, is as remote as a yellow faded photograph. The room floods with talk.

“Hi, George. Aisha is here to see you.”

“Daddy I love you.” And despite the wish that George would talk or be able to recognize his

wife and daughter, it doesn’t happen.

When Aisha leaves she says, “Mommy, did Daddy know who I was?”

“Of course he did and ...he loves you very much.” The doors close down the end of the corridor

behind them.

Yesterday, a friend of his came in from work to feed him. I wish that I had photographs of these

small scenes of decency. Two black men together, both about forty, one dying of AIDS, the other well-

dressed feeding him: Spoonful by spoonful, as patient as any mother to a child. Love, it certainly doesn’t need a neon sign, it’s here in so many small and discrete ways. This is healing, one man

affirming another, his friend, the one he used to go out with and have a beer is now feeding him

because he’s too weak. I talk to the friend and he says, “I know George and if it were me here, he would

do the same for me.”

LOVE:

Love is a mountain, sometimes hidden, but always there. So strong, powerful unmoving,

unchanging. It is there. Powerful. Rock solid. There is nothing wimpy about love. Not a damn thing

sentimental about it. It is faith. It is belief when there appears to be nothing to believe in. Love, that life force faith of spirit which makes us human.

Let me always see that love, let me always remember that it’s there, let me not forget that it is

the thing which binds us one to another, and it’s clearest moment it is our capacity to be genuinely --

human.

Love. The first blast of sun on a cold winter day. Love. The first sign of life in spring. The power

to believe when there seems to be so little to believe in. Love. It is Aisha holding her daddy’s hand and

waiting for him to wake up. Love.

October

It is autumn now, almost a year since I began these notes. I’ve stopped working on the Alley for

awhile. I’m getting burnt out. In the middle of the week when there should be the most staff on, Sandy

has made the schedule so short that there are only two nurses on. Yesterday there were three patients

to every nurse, but today with George dying, several others who are getting near that stage, and Xavier sitting in his room stoned and talking to himself, there isn’t enough help.

I’m exhausted I don’t have time nor do I want to give one ounce of my energy to those who are

not serious about being here. This isn’t a club house at the l9th hole for drug addicts. There is no room

for someone who has no interest in recovery, or at least trying to buy a little more time.

In short, I need to leave Paradise Alley for awhile.

I move through the range of my emotions, as real and ephemeral as these October winds.

Emotions on one day vivid, skyscraper tall and on the next moment --no more than a memory.

However, this is the essence of our work, emotions and the healing of them. The core of AIDS work is a

profound emotional and spiritual healing; not only for the men here on the Alley, but for myself as well.

At this point I am unable to communicate this view to my colleagues.

Maybe it is more realistic to be like Lillia, who moves through the day calmly, occasionally

laughing, and speaking to the mothers in a way that is intimate without invading their privacy. I watch

Lillia talking to the mothers and the fathers in that slangy Puerto Rican Spanish that leaves me missing half the conversation. What I cannot piece together in words I can understand in their eyes, the touch on the shoulder, and the bridges of understanding that are made.

Lillia has children as old as some of these men who are dying. She grew up in a dirt floor shack

in a shanty-town outside of San Juan and married by the time she was sixteen, maybe younger. What I value in words and counseling skill, she accomplishes more through the intimacy of a common past.

The mothers come with rosary beads and hopes, in the chance that something will save their sons, few will acknowledge that Death is at the door. Few will ask, “When?”

Lillia doesn’t say, she smiles, changes the sheets, speaks to these women, one to one, as if it

were one sister to another. I want to understand more of what is said. It is at that moment I realize

how much I love and admire this woman. But we don’t get deep nor do we talk about all the stuff of emotions, it’s there, we both see it, and we accept it. When we were working with George the other

day for about twenty minutes, we worked without saying much, we knew: my hand reached across the

bed to take the sheet she was spreading out; we worked as if we were the right and left side of a body: washing him, massaging his body, in some unspoken way we were working with him and his process

of dying. From the outside, it was two nurses changing a patient and making him comfortable. Maybe that was all we were doing. But I knew it wasn’t. For one moment we stood together in the same

common river of time, this older black Puerto Rican woman and I, a younger white man, working with

a dying African American man.

The work with the men on Paradise Alley is coming to a close and I don’t want it to. I want to

stay. While one part of me believes it’s all been for naught and that little was accomplished by what I

did, another part of me knows that it has made a positive impact on many of the men who have come

here. I haven’t changed the institution nor any of the rules to the games, but I’ve spoken with love and

courage, and dared to be human - - in that is a victory.

CHANGE OF SEASON:

These scenes float in front of my eyes. The widow. The brother. The mother trying to save her

son. The son of one who is punching a wall and crying. The nurses who leave with tears in their eyes.

The nurses and doctors who are reluctant to talk to the men. The addicts who are high. The addicts who are in recovery. The two new men who have been trading punches. The old Puerto Rican with

AIDS talking to the young Panamanian with AIDS about how it’s important to take better care of

himself. The narrative of a tale not always of the brave or hopeful...but a journal of the plague.

The Alley, even at the end of a year, is still filled with paradox. The same paradox that life

presents. Isolation, deep and as still as a Vermont winter lake, is broken by the sudden visit of a family who finds a long lost son. Or when you least expect it, there is the man who gets up from his sick bed, looks in the mirror, shaves, showers, takes one look behind him, and never comes back.

The stories continue, and the plague though shrouded in secrets will continue to follow us. If

not this plague then some other. It speaks to a part of our soul, some deeper undiscovered cavern

where there is little distance between the people who drew stick figures on caves and we who can now build towers to the skies. Somewhere in that speck of time transition we need to remember - some

fundamental part of who we are, our connection of one human to another.

I do not know if there were any answers offered in these pages. The questions still exist for

each person: What does this plague teach us about being human? How do we give voice to our

isolation? How do forge communities in this age of isolation? How do we love? Yes, how do we love?

On the front page of the newspapers this week the stories of AIDS is pushed back and it

recedes from broad public view while a new crisis occupies the public’s attention. Yet, it is still there.

I wish there was some final “grand moment” that would end this story -- the patient gets up out

of bed and is cured or there is some new miracle drug found, but so far, that is not the end of the story.

At this point there are no victors, no triumphs, only small moments, very small moments of hope. And what passes for triumph in AIDS is making it through another day without pain or sickness.

There is one last scene. Yesterday, I was walking past a coffee shop on Broadway and sitting

on a stool was Zeke: long greying bushy beard, hair tied back in a pony tail, wearing a black leather

motorcycle jacket and cap, and quietly sipping a cup of coffee, looking quite satisfied. He said, “Life is fine - life is very fine.”

This has been a Journal of the Plague, a story of living and working with AIDS.

*************** the end ***************