the health humanities journal of the university of north carolina at chapel hill
spring 2018 exploring illness, caregiving, and medicine
The Health Humanities Journal
of the University of North Carolina at Chapel Hill mission statement
The Health Humanities Journal of UNC-CH aims to inspire and facilitate interdisciplinary thinking and collaborative work while developing and embodying a variety of ideas that explores the interface between arts and healing. This publication allows for dialogue, meaning-making, and multiple representations of the human body, medicine, and illness. To learn more about the publication or to submit, visit http://hhj.web.unc.edu
disclaimer The Health Humanities Journal of UNC-CH adheres to legal and ethical guidelines set forth by the academic and health communities. All submitters maintain patient privacy and confidentially according to the Health Information and Portability and Accountability Act (HIPAA). The University of North Carolina at Chapel Hill and The Health Humanities Journal of UNC-CH do not endorse or sponsor any of the viewpoints presented in this journal. The opinions presented in this journal are those of the corresponding authors.
hhj of unc-ch spring 2018
editorial team Manisha Mishra Editor-in-Chief Majors: Biology and Interdisciplinary Studies Minor: Chemistry Class of 2018 Katie Huber Layout and Design Editor Majors: Anthropology and Interdisciplinary Studies Minor: Biology Class of 2018 Annie Konzelman Art Director Majors: Art History and Comparative Literature Class of 2018 Sophia Shwartz Treasurer Major: Biology Minors: Chemistry and Russian Language and Literature Class of 2018
Meredith Dorminey Editor Major: Biology Minors: Chemistry and Neuroscience Class of 2018 Jackie Kenny Editor Major: English Minors: Creative Writing and Comparative Literature Class of 2018 Madison Schaper Editor Major: English Minors: Creative Writing and Writing for the Screen and Stage Class of 2018 Calvin D. Olsen Graduate Editorial Advisor M.A. Candidate in Literature, Medicine, and Culture Jane F. Thrailkill, Ph.D. Faculty Advisor Co-Director, HHIVE Lab Department of English and Comparative Literature
table of contents Editor’s Note Manisha Mishra
Help Wanted Shelby Anderson
antiBODY Calvin Olsen
Atrophy Paul Blom
Visiting You, There Tyra Walker
The Alzheimer's Abyss McKayla Hensley
Interview One Annie Konzelman
Feeding the Heart Lauren Audick
“Why Did They Have to Use the Word Bowel ? ”
The Light Tabeeen Zain
Ned Madison Welborne
Biopsy Tony Asher
Interview Two Annie Konzelman
Vacancy in the Lane
Bret Robinson 37
Like Acetone to Portraits Reflections from an Editor
HHJ Reflection Madison Schaper cover art: perspectives by Annie Konzelman
41 42 43
Dear Readers, As another semester comes to the end for the journal, the time has come to write my last note for The Health Humanities Journal—what a bittersweet moment. In the midst of our final and busiest semester at Carolina, the Editorial Team and I truly enjoyed working on compiling this issue together. In this issue, the Editorial Team and I present the theme of “Perspectives on Health through the Humanities.” Most of the submissions in this issue explore the ideas of what health means to the individual. Beyond the diagnosis, the numbers, the treatment plans, the medication, who is the person at the focus of the examination? More specifically, what is his or her story? For us, it points to the question of what can we, as readers, learn from their experiences regarding illness and healthcare? Watching this journal develop and flourish over the last two years has been absolutely mind blowing; little did I expect a project from a research class to turn into a full-fledged publication. With each semester's publication release, the journal has changed. While the original purpose of the journal was to serve as an opportunity for students to publish their academic writing and class work, this journal has shifted to become a broader platform for expression and creativity regarding health, illness, and well-being. Members of the Carolina community have not only given the journal its purpose but have allowed for the journal to begin its legacy—and for that, thank you. As my time as Editor-in-Chief wraps up, I owe a debt of gratitude to the individuals and organizations that made my dream happen. To our sponsors, Health and Humanities: An Interdisciplinary Venue for Exploration (HHIVE), Honors Carolina, Department of Social Medicine, and Carolina Creates, thank you for providing the resources to make the journal a tangible product. To Kym Weed, thank you for assisting us in any way you could. To the authors who have
7 contributed to this issue and to those of past semesters, thank you for sharing your stories with us. To Meredith Dorminey, Katie Huber, and Sophia Shwartz, thank you for being dedicated members of the Editorial Team for the last two years. To Jackie Kenny, Annie Konzelman, and Madison Schaper, thank you for joining us this year and strengthening our Editorial Team. To our graduate editorial advisor, Calvin Olsen, thank you for motivation and guidance. And to our advisor, Jane Thrailkill, thank you for believing in this idea and for support throughout the years. If you are ever intrigued to learn more about this field, follow that fascination. Carolina has one of the fastest-growing interdisciplinary Medical Humanities programs, and as a student, you have full access to it. Take a class, meet a professor, attend a seminar, talk to a student, learn about the Medicine, Literature, and Culture minor, stop by HHIVE, write for the journalâ€”there are countless opportunities to get involved. For me, it was an interdisciplinary English class that caught my attention; a few lectures in, my passion for the Medical Humanities was ignited. Happy reading, Manisha Mishra Editor-in-Chief
help wanted Shelby Anderson “I had no idea she was struggling!” How would you? I don’t go around with a sign: [Help Wanted] “How are you?” I’m crumbling
like a piece of dry cranberry scone.
A scone sounds nice. “I’m Good!” Oops, it’s a reflex. She seemed fine.
Everyone seems fine. Wonderful actually. I seem to be the only one drowning in the tsunami of Zuckerberg blue. My loneliness quantified by likes and snap views. What if I told you I’m programed for self-destruction.
9 My DNA is a potluck for mental disorders. Anxiety brought racing thoughts and tachycardia. Depression wanted to stay home, but felt guilty. Bipolar was late. ADHD already started eating. When I had surgery, sprained my knee, got strep throat it was “Get well soon!” But since my brain’s sick,
I need to try harder.
I’m not better.
So I hold up my sign [Help Wanted]
Shelby Anderson is a senior from Dallas, Texas majoring in Psychology and Chemistry.
antiBODY Calvin Olsen
The relentless advance of medical technology is, like the fields of poetry
and medicine, dichotomous: developments move doctors successfully toward the extension of life, and by so doing they simultaneously create an atmosphere in which overtreatment and medical futility are forces to be grappled with for both practitioners and patients. The progress of medical technology opens the door to a fascinating subsection of the poetry-illness-body intersection, because poetry can examine the limitations inherent in medicineâ€”limitations that have consequences for real people searching for relief. Danielle Ofri, author and Associate Professor of Medicine at New York University writes: For all the reductionist scientific advances in medicine, illness is still profoundly illogical and mysterious. Despite its complexity, the human body is primed to work perfectly, and our reliance on this effortless functioning is our primordial defense mechanism for survival. When the body breaks down, we are literally rendered speechless, but poetry is one of the ways that we reclaim our voice. The loosened and limitless reigns of poetry make it particularly susceptible to, and reflective of, the warp and weave of illness.
Medicine seeks to address illness, but illness cannot be fully addressed because individuals all experience it differently. There is always someone defying survival rates or not conforming to success statistics, and poetry can pick up where medicine leaves off. Illness narratives written in prose can help patients reclaim their voice, but the conventions of poetry can go a step further in depicting illness because poetry has a higher tolerance for space and ambiguity. Poetry may be a finer instrument of feeling than prose because of its heightened rhetoric and rhythm. Contemporary poetry is very much sentence-based like other writing, but use of the line can help introduce more pattern and variation than prose, adding to the surprise and intensity of description.
Thatâ€™s not to say poetry is the only answer for understanding the liminal
space of illness; illness will still evade poetry on some level. Quoting Ofri again, â€œIt is impossible to tease out the precise effects of illness on poetry because it is impossible
11 to conduct a randomized, double-blind, placebo-controlled trial.” However, even though poetry isn’t as popular an artform as prose or TV or other products of popular culture, it still holds an exalted place, even in a culture that ignores it. Poetry is comprised of a denser, more affective language than normal speech that requires a slower, more prolonged exercise of attention. And in a world that is totally fragmented with overstimulation (cell phones, device screens, etc.) it’s harder and harder for people to slow down enough to speak a poem. That may be why people who get sick turn to poetry: because their bodies have broken down and they are forced to slow down. Waiting rooms, treatment plans, medication testing—all of these facets of medicinal experience (and others) become shared experiences, and readers want representations of experience that are like their own. They also want to write it.
To attempt a pure depiction of the human suffering would be an exercise
in futility, but poetry’s ability to embody more than exists on the surface allows it to approach closer than any other genre. As explained by Furman and colleagues: Poetry is a means by which people encounter, engage with, and express perceptions of their internal and external worlds and commit these perceptions to written or spoken word. Through the creation of a poem, the poet seeks a truth that perhaps transcends how we typically view truth. That is, poetic truth is not only judged by a poem’s capacity to meaningfully symbolize and express something encountered in the internal and external worlds, but is also judged by its capacity to meaningfully express the relationship between the poet and his or her internal or external worlds. In this sense, poems can also be an exploration into the complex interactions between people and their environments.
In the context of poetry and medicine, modern medicine has made it possible for the internal and external worlds spoken of to be housed in one literal body. Medical apparatuses of many kinds can be utilized to assist, supplement, or even replace human body parts. In terms of how they connect to the body these apparatuses range from fully visible instruments (i.e. colostomy bags and EpiPens) to subcutaneous implants (i.e. Mediports and pacemakers) to permanent internal devices (IUDs and coronary stents), and even some combinations (i.e. ventricular assist devices with external batteries). The experience of treatment via devices is in
12 continual flux as new technologies are developed, but illness maintains its edge as each patient and case are unique. While apparatuses help in many ways, they also change the body in particular ways.
Once an apparatus is introduced, the human body becomes fragmented
and subject to modification, resulting in an expansion of the definition of human experience because the body ceases to be a self-contained entity. The human body transforms into a conglomeration that mirrors the individual nature of lived human experience. Much in the same way outsiders may view a poem as prose narrative chopped into pieces, medical technology interrupts the original flow of bodily function. In literary terms, patients that uses temporary or permanent medical apparatuses fall into the realm of “posthumanism.” In her book about virtual bodies N. Katherine Hayles says, “The posthuman subject is an amalgam, a collection of heterogeneous components, a material-informational entity whose boundaries undergo continuous construction and reconstruction.” Rephrasing in relation to poetry and medicine, patients in contact with medical apparatus are more susceptible to being viewed or described in terms of their piecemeal parts rather as a singular entity. The body goes from being a self-governed whole to a disjointed environment where pieces are both open to modification and viewed in relation to each other. Needless to say, this new relational body is difficult to describe, which exacerbates the already-complicated question of how to depict and explain illness in writing. With outside machinery now affecting internal experience, poetry becomes even more important as a means of expression—not because it is better than other mediums of expression, but because it provides a more focused and expressive way of doing what all narratives do: creating a whole that is more than the sum of its parts.
The human body is unique in its ability to generate meaning from
experience, and adding technologically advanced apparatuses in many ways makes wider the gap we attempt to bridge between individuals and experience. These apparatuses have the potential to enhance or even expand human experience, and poems can work individually and collectively to help us embrace the intangible without needing to delineate its parameters. As a literary medium, poetry has the capacity to depict relationships of all kinds, even those that are difficult to rectify
13 when placed together. Illness and pain have a centripetal effect on those who experience them, forcing us to look inward and driving us away from language and community. It is my belief that poetry will counter that centripetal force with an equal or more powerful centrifugal force to drive readers and writers past the pain and into lived and shared bodily experience, to push literature beyond the body and not just into it.
Calvin Olsen is an M.A. candidate in English and Comparative Literature with a concentration in Literature, Medicine, and Culture and is from Meridian, Idaho.
atrophy Paul Blom
These words have fists and they’re pounding against my skull, weeping to be let out. If I could scream, believe me, I would. Hell, if I could cry, believe me, I would. Hands emerge from the nebulae in my periphery to lubricate my unflinching eyes with artificial tears while plastic tubes penetrate and intermingle with my veins or slither down the back of my throat to—I assume—pump me with oxygen or food or nutrients—everything a growing boy needs. In one end and out the other, tubes penetrate me run through me to collect everything my body refuses to absorb. Other hands emerge to wipe me down turn me round turn me down. Something somewhere nearby is pumping oxygen into my lungs like a fireplace bellow. Iron lung Iron Man Man of Steel. That’s it. I must be invincible. Made of steel. Too tough to die but too heavy to move. Locked caged trapped tapped out immobile immovable more machine now than man like god-damn Darth Vader. I’m plugged wired synced and linked up to a baker’s dozen of different machines, all monitoring reporting prognosticating my progress. I can see hear feel smell taste the dryness of a mouth begging to swallow, a throat with cherry tongues burning. Let me cough or gag spit them out, at least let me swallow them down drown them out to sizzle gasp simmer dissipate disappear somewhere in my insides. If I could turn my head, would I see flowers cards balloons get-well-wishes framed photos remnants to make my hospital room more “homey” and comforting?
15 I can hear the heart monitor. I remember those from tv hospital dramas. A green linear landscape against a black background, green mountains interspersed with green plains signifying the anxious anticipation between each heartbeat. That incessant beeping is like the Chinese water-torture dripping water droplets on my forehead. If I could flinch, believe me, I would. That beep reminds me I’m still here, undying, unmoving. The silences in between remind me I can’t hear her crying consoling comforting hoping praying chatting above me anymore. I can’t remember the last time her face emerged above mine to offer my eyes a smile grimace choke sob tear. When I close my inner eyes I just have a sense of the cords, an endless array of cords running in into down through throughout around out out of me and I’m just waiting for someone to trip rip them all out and take me with them down that long slow flat line into a vacant screen. Forget the mountains and the beeps. Gimme a plain of endless green. But the doctors orderlies nurses are far too nimble and no one else comes round to visit anymore.
Paul Blom is a Ph.D. candidate in English and ComparativeLiterature from LaGrange, Georgia.
visiting you, there Tyra Walker You speak endlessly over a relentless future, every utterance a quill, a stark, stabbing spine that fends off aid and causes you to bleed; You bleed being that once held life worth living, each word a lilting sidestep in time with your frenetic heart, dancing away from all that ever cared and losing all that ever was. Cold lights and harsh beeps hold you now. I think my friend is here. I want to hug you until death comes, to capture your heart in the sprung trap of your collapsing rib cage. I want to inflict the calmest still over your shaky and slender limbs, and to cool the heat of your warm, wet hands. I want to watch your fingers become like the empty blue winter sky, to watch your searching eyes flutter closed, to see your mouth quit its ceaseless work, the curves resting, perfectly, naturally, to feel each muscle as it relaxes like it hasn't done in years. I want to feel your peace.
Tyra Walker is a junior from Burlington, North Carolina who is majoring in Nursing.
the alzheimer's abyss McKayla Hensley
Just as he had gained milestones in early childhood, he lost them—falling
down, falling in love, falling out of love, falling into an inescapable abyss. He reverted from a strong, capable caregiver to a degenerate, confused man in need of the same care he had been providing for years. Memories dropping one by one like the petals of the flowers he had so lovingly cared for.
“He remembers me. He remembers me not.”
“He remembers everything. He remembers nothing.”
It was not long before we realized his few lucid days were nothing but a
curse—reminders of the seemingly simple desire we had been desperately trying to reach, all the while knowing it was a hopeless effort. In his lucidity, he suddenly became aware of what a burden he was, although we never saw it that way. On the days that should have been a blessing, he fell deeper into sadness and deeper into the abyss. He retreated into his mind like a tortoise into its shell. Occasionally, we could coerce him out with a song he liked or just with our presence, but the damage was irreparable. When he decided he was done fighting, it was over. At least, his life was, but the pain of an ambiguous loss is incomparable to any other—I wished for him to die. I wished for his pain to be over, but when it was, I grieved for him like I had a thousand times before. Now, all I feel is guilt. How many times can you grieve for the same person?
McKayla Hensley is a sophomore from Highlands, North Carolina who is majoring in Biology and minoring in Neuroscience.
Annie Konzelman Annabeth, a student at UNC, describes her personal experience with illness. * * *
“We grow up in a culture that’s so focused on knowing everything and being
able to control these types of factors in regards to health. Now I’m studying medical anthropology, so how culture impacts medicine. And so, biomedicine as a culture puts a premium on things that you can see and touch and, like, fix — so, things that you can just give people medicine for and they can get better. It’s very categorical, so there’s no room for anything that is unexplainable. So it gets in your head that if doctors can't find an answer for it, then I’m not sick. Like I’m clearly not medically ill. And so, when I started having symptoms in high school, I went to a doctor and he basically told my mom that sometimes children lie to get attention, because he couldn’t find anything medically wrong with me. And to me, even though I wasn’t lying, I was so scared to ever talk about any symptoms going forward from that, because maybe I am making it up.”
“So, when I got to my sophomore year in college when I was so debilitated
by this disease, I still wasn’t doing anything about it. And my mom had to push me to finally go to see a doctor because I thought I wasn't sick. I’m just normal tired like everybody else. So that brings up the idea that you either have a disease that you can name and see, or you’re fine — it’s like you’re either one or the other. There’s no in between where there could be some type of disease or illness that they haven’t figured out yet. There’s no room for that in medicine and in science. There’s starting to be, but I think it’s really hard to be in that weird in between, because you don’t have something to present to other people to help them understand what’s wrong with you. Because it really does impact every aspect of your life, and when like you don’t have something to point to, like, 'I have this disease and this is why I can’t seem to get up and go to class on time, or why I can’t hang out with you guys every night, I
21 can’t stay out until four a.m.' You know, I can’t do many of the things typical college students can do.”
“And there’s a huge stigma, so if you don’t have some type of disease, you’re
just lazy or you’re antisocial or you’re weird. So when you don’t have something like that, it makes you tend to start to believe those stigmas. I got to the point I was like maybe I am going crazy. After that, I started to see doctors trying to find the answers and there weren’t any. They tested me for one thing after another after another, and it all came back negative, and doctors would be like, 'I can’t do anything for you, I give up.' Wow, if biomedicine is giving up on me and there isn’t an answer, maybe something is wrong with me. So that distinction between disease and illness creates a stigma not only for yourself, but for other people. One of the hardest things about having a chronic illness is trying to figure out the plane of accepting yourself, but then also figuring out ways to interact with other people — people who are your true friends and then just small daily interactions. If you're a stranger to me and you find out I’ve taken a year off of school, and you ask why, how do I explain that? How do I explain this whole two-and-a-half-year experience of illness and fighting, and all of the things that have gone along with that, in a ten minute conversation? So, trying to find that balance is difficult in a world that doesn’t really make a lot of room for that.”
This interview was lightly edited for clarity.
Annie Konzelman is a senior from Burlington, North Carolina who is majoring in Art History and Comparative Literature.
feeding the heart Lauren Audick
After weeks of ordering meals from the hospital’s menu, Miss B reigned over the unfamiliar OT kitchen despite not having the mixer, spatula, or spoons she was used to. She sat at a table far too small for all the items and ingredients atop it while I scavenged the cabinets and drawers for each additional request. But when she said, “Little girl, get me a knife” somehow, we were both transported to the heart of her home. She brought the kitchen to life. Her stories seemed inexhaustible though her arms tired quickly; she passed me the spoon to keep stirring and continued her story without skipping a beat. As it turned out, the cake mix should have been ‘Butter Supreme', there wasn’t enough sour cream, the mandarins were suspended in ‘Lite’ syrup when they shouldn’t have been.
23 Nothing was quite right. But she was still proud. “It’s got to be spread just so." “We’ve got to clean up the edges so it doesn’t look shabby.” She embraced the mess and embodied the majesty of it all. Now, seated in a wheelchair as her throne with a cloud of powdered sugar on her shirt, she sighed, “It's wonderful to do this again.”
Lauren Audick is a second-year Occupational Therapy student from Long Valley, New Jersey.
“why did they have to use the word bowel ? ” Allison Ruvidich
My name is Allison. I have IBS.
To which you hopefully respond, “What?”, so I can awkwardly say “What?”
back and change the subject, thus avoiding the conversational sin of saying the word bowel out loud.
To be honest, I don’t even know what IBS means clinically. The intimidating
doctor who diagnosed me didn’t explain that part. Or maybe I stopped listening once she told me that she knew why I was in pain and could do something about it.
But why did they have to use the word bowel ?
IBS stands for irritable bowel syndrome, a three-word phrase I have said out
loud precisely once, in a disbelieving voice immediately after receiving the diagnosis. It is a phrase I spent years looking for, an explanation for the sudden bouts of shattering pain that arrived more and more frequently until they stopped going away entirely.
IBS presents differently for each person. For me, it means missing school
and lying in bed, watching Netflix to try to distract myself and sweating from enough pain that I once bit a hole in my duvet cover. By the time I was diagnosed, at age eighteen, I’d been offered a variety of other diagnoses—lactose intolerance, gluten intolerance, gastritis, malignant stomach bacteria, and pancreatitis. These were names slapped onto my pain and experiences by overworked and disinterested doctors, who edited the symptoms I gave them until they fit something. Then finally, one shining day, I had an answer to the question I’d been asking with every painthinned breath, and it had the word bowel in it.
When you add the word bowel, you’re doing more than describing a
digestive disorder or embarrassing me. You’re stripping me of my chance for community and dignity in my illness. You’re stacking a little more of an emotional burden on me every time I have to go to a doctor, or miss class, or explain to a friend why milk and wheat can knock me out. How can I tell them? I would flush my
25 medicine down the toilet and eat a whole wheel of cheese before I would casually use the word bowel in front of my friends.
There are ways of lashing out against the silence, using words and humor.
For example, my colon’s name is Colin. The name is a gift from my sister, so when I feel the first twinges of pain coming on, I don’t have to say: “I have IBS” or “Sometimes it hurts so much it’s like the top layer of reality is peeled away, and I can see the ugliness beneath.” Instead, I can say: “Colin’s being a — today,” and I get a little pleasure from cussing.
But words and glibness don’t matter when the pain sets in. They can’t
persuade me to not be afraid, and to me, IBS means fear. I’m afraid of the person I am when I’m in that much pain. Pain takes away your identity, your coping strategies, and even your morality. When I’m in the grip of that pain, I would do anything—I would take the health from someone who needed it more—to be anywhere but here.
If the people who named the disease with the word bowel had made a
different choice, it would not lessen my pain one bit or shorten its duration by even a minute. It probably wouldn’t have made it easier for me to be diagnosed, and it definitely would not stop me from being afraid of the pain that IBS brings.
My name is Allison. I still have IBS. And if I ever say those words out loud
to you, and you say, “What?”, please understand that I’m still going to change the subject. I want to tell you my story, but at the moment, I can’t do that without sacrificing my dignity and comfort. IBS has already cost me so much. I want to keep whatever I have left.
But it is my hope that someday, this will not be the case. Someday, saying
“I have IBS” will be like saying, “I have a migraine.” Teachers will let you go home. Your friends will offer you Advil. You won’t have to explain that it means pain, fear, and being alone, because they’ll already know.
Allison Ruvidich is a sophomore from Apex, North Carolina who is majoring in English and Classics.
the light Tabeen Zain
i’m here again. in a chair in a cold room, with needles ceaselessly piercing my mouth telling myself it’s okay, it’s okay, it’s okay i’ll forget this pain tomorrow i’m here again. letting my face get pulled every which way expected to still put on a smile when it’s over even though it hurts. i’m here again. the nurse can’t find a vein. she finds a pincushion, not me. her pokes still don’t hurt as much as when i’m the punchline of a joke i can’t laugh at i’m here again. swallowing the pain and regurgitating it in secret hoping my hurt doesn’t hurt anyone else praying my loved ones don’t see me like this thinking, asking, begging what sin did I commit before existing to be born broken to know that each suture and each operation cuts me more without fixing anything i’m here again. staring into that bright orb above me hoping this is the last time but knowing it is not its glow will perhaps haunt my memory forever
27 i’m here again. surrounded by these walls painted with butterflies and lions and giraffes things that once brought me such happiness but now create a bitter taste in my mouth because I don’t understand why i’m here again.
Tabeen Zain is a sophomore from Raleigh, North Carolina who is majoring in Biology.
ned Madison Welborne
I’d been in inpatient treatment in Arizona for about two weeks, and I didn’t
want to get better. Actually, I didn’t think I was sick.
By that time I was fifteen and hadn’t had a period in two years due to my
body being in starvation mode. The osteopenia and depression and heart condition and exercise addiction and malnutrition and “dangerously low weight,” and screwedup labs and my mountain of lies meant nothing to me because I didn’t feel thin enough. It was like the line between human and animal had become so thin it collapsed. I was gone. I was starving. I went feral for a little while.
I remember Ginger, my nutritionist, sitting me down one day. “Madison,
we need to talk,” she said.
“Okay…” It wasn’t our scheduled appointment time. I thought, Did she
find the gristle in my sneaker? Have I gained weight? Did the video-cam catch me doing crunches last night?
Ginger pulled me into the small nurses’ station in the basement. We sat
down on the metal chairs.
“Your metabolism is on fire,” Ginger said.
I hadn’t expected this. I said to Ginger, “I don’t understand.”
Ginger placed her palms on her thighs and took a deep breath. “As you’ve
starved yourself for so long,” Ginger said, “your metabolism has shrunk to nothing but embers. Now that we’ve been re-feeding you, we’ve added more fuel, and the fire has heated up.” I scrunched my nose. “No, it’s a good thing,” said Ginger. “It means your metabolism is working again.”
Her office was cold, and I didn’t like the direction in which this
conversation was heading.
Ginger cleared her throat. “Now that there are flames,” she said, “your
metabolism has gone from embers to a forest fire.” I must’ve had a blank look on my face, because Ginger said, “I’ll put it simply: you’ve lost weight. And it’s not good, Madison. I can’t risk you losing any more. You’re supposed to gain. And your current
29 weight is lower than when you were first admitted here two weeks ago. At this rate, you won’t be able to leave within sixty days…”
“Okay…” I said, pleased with my weight loss. But I think I knew what she
was hinting at, and it horrified me.
Ginger said, “I’m recommending the feeding tube.”
I don’t remember what happened next because the anorexia was screeching
and plotting in my head. Fucking hell—you’re already fat—you can’t trust anyone— Ginger’s a fat cow—
These thoughts were so loud that I couldn’t hear myself. I knew what the
tube meant: two thousand extra calories each night, your stomach eating while you sleep, weight gain, the taste of peanut buttery fluid called Jevity in your mouth each morning, heartburn, night sweats, nausea, cramping, constipation, dragging your pole if you had to use the bathroom, weight gain…weight gain….weight gain in your stomach and face, fat in all the wrong places…
“Madison?” Ginger said. “Madison, are you hearing me?”
I shook my head. I said, “What if I refuse?”
Ginger crossed her arms, and I sensed war. “You can’t refuse,” she told me.
“You’re a minor. All I need is your parents’ consent.” * * *
There was lubricant on the thin, yellow nasogastric tube. The nurse held it
in her hands. Both the tube and her gloves looked like little animals.
“Which side?” asked the nurse. “I mean, which nostril do you want it in?”
I thought about how I sleep on the right side of my body and so I said, “The
I sat on the exam table holding a cup of water in my right hand and
Amanda’s fingers in my left. Amanda was my best friend in treatment so far. We had the same food rituals and fear foods. We were the same height, 5’9”, and even shared a goal weight.
Amanda had blonde hair past her breasts and jeans that threatened to
30 fall from her hips at any moment. She stood beside me and said, “It’s going to be okay,” which we both knew was cliché and a lie—no one could know whether I’d be okay—but somehow it still helped to hear. She had a light, nasally voice and spoke quietly as if she thought no one wanted to hear her. Amanda’s arms, neck, and cheeks were covered in fuzzy, blonde hairs. I had that too; it was called lanugo, and it was a fancy name for animal fur, the kind babies are born with. It grew to insulate us where we didn’t have fat, which was just about everywhere.
Amanda technically needed a tube too, but since she hadn’t refused the
staff even once, she was allowed to gain her weight back on Ensure Plus drinks. She was the perfect patient, unlike me, who could only eat one Lay’s potato chip at the Restaurant Challenge and who refused meals and hid food and exercised in secret obsessively.
Before I could say no, the snake and her gloves, which looked like two
starfish, were headed for my left nostril.
“Sip through the straw when I tell you to,” said the nurse, “and don’t stop
till I say so.”
“Will it hurt?”
Amanda squeezed my hand tight. The nurse said nothing, and I knew that
Inside the tube was a stiff, metal rod. It forced the flexible tube upward into
my nasal cavities.
“Ah!” I leaned back. “Get it out!” My nose was on fire.
“Squeeze my hand,” said Amanda, “You can do this.” But she couldn’t even
watch. I could see her looking away.
The nurse shoved the tube further and further up my left nostril. I kept
moving my neck back, trying to make space between me and the snake that was causing (what felt like) a terrible brain scrape. I expected the tube to feel softer sliding up, not like this. Not like sharp pain. Shit, I thought, maybe she missed. Maybe it went up the wrong way.
“Almost there,” the nurse said. “Now drink.”
I took a sip of water. I watched the thin, yellow tube disappear into my
31 nose. I was swallowing it into my stomach. When I swallowed, my throat pulled the tube down with it, and that hurt. I winced again when she pulled the metal rod out. My throat scratched. Did the doctors mess up on my case? Could I actually be sick? I really considered it.
There was little space in my left nostril. It was harder to breathe. It was
harder to eat. It was harder to swallow. It was harder to sleep (I had to sleep sitting up so that gravity would help me not puke during the feedings). Feedings would start that night at two thousand calories. They’d increase until three thousand then go down on my Sweet Sixteen. I’d be extended thirty extra days.
The nurse taped the tube to my left cheek and tucked the tail behind my ear
like it was a stray piece of hair.
“That’s it? Am I done?” I said, eager to leave.
“Almost.” The nurse held up a syringe. She opened the pink tube cap
and squeezed water into my tube. “Don’t worry,” she said. “This part won’t hurt. Some girls actually think it feels nice.” When she flushed the tube, it felt like I’d accidentally sniffed ice water. She was sending cold water through to make sure that I’d swallowed it down properly. I shivered.
“You did it!” said Amanda, smiling.
I smiled back, but I wasn’t happy.
“What will you call it?” Amanda asked, like I’d just given birth. I knew that
naming your tube was a tradition in treatment. Some named it Diablo or The Bitch, but I hadn’t bothered to think of a name until now.
Once it was settled inside, it was as if I’d known its name all along. It was as
if the tube had named itself. I would name it for its intended use: “Ned,” I said. “For No-Eating-Disorder.”
“It fits,” said Amanda.
I had to agree. The nurse took her gloves off, and we stood up to leave. * * *
Three months later, the tube removal felt like a stiff sour noodle being
pulled from my brain. The nurse said, “Don’t look,” but I did anyway. At the end of the shriveled, yellow tube that had lived in my stomach was brown and black liquid, dripping as it swam out of my left nostril. I tasted stomach acid.
Like before, the nurse gave me a cup of water. I swished with some water
and spit brown stomach acid back into the cup. I started to cough.
“Can I keep a little piece of it?” I asked the nurse.
“No, you can’t,” she said. “I’m sorry.”
Then she hid Ned. I think she threw him away. My face felt naked suddenly;
I didn’t realize how used to it I was, seeing the tube taped to my cheek, and feeling it pull in my throat when I swallowed food. We used to blow into the pink ends of our tubes then laugh at the funny noises our stomachs made from the air. Now there was too much room in my left nostril. I could breathe freely, and it didn’t hurt to swallow anymore.
I don’t know why I wanted to cry.
Madison Welborne is a senior from Charlotte, North Carolina who is majoring in English and minoring in Creative Writing and Speech Pathology.
Tony Asher Parents carry shards Of hope for their child. Daughter, Future gone missing * * * When a pharmacological regimen that is prescribed for a patient doesn’t work, the standard way clinicians convey the result is by saying, “the patient failed the treatment.” I’ve always found this rhetorical decision absurd. Framing the failure as an issue with the patient—by making the patient the subject of the sentence—places undue blame on the patient, whether the clinicians mean to place this blame or not. I wrote this poem after meeting the parents of a young patient who was terminally ill with cancer. Previous treatments had failed her, and her physicians were obtaining a tissue sample to determine if there were any other treatment options. Her health was declining and her parents wanted so desperately for the biopsy to reveal promising news—perhaps of another treatment option or a tumor less invasive and destructive than her providers once thought. This encounter moved me to write for two distinct reasons: one, the parents, no matter how dire their daughter’s situation seemed, did not give up hope that she could be cured. Two, after the encounter, I learned that their daughter was terminally ill, and that she was going to die. The fact that all the biomedicine in the world had failed her was crushing. It was unjust. Her future had been stolen.
Tony Asher is a first-year medical student from Charlotte, North Carolina.
interview two Annie Konzelman
Emilie, a student at UNC, describes her personal experience with depression and anxiety. * * * “I think I can explain a lot of my depression and anxiety, but in regards to people fully understanding where I’m coming from, I don’t think that that happens very often. That doesn’t mean I don’t feel supported, because I also understand that you can’t always live other people’s experiences. I think just by having friends sit and listen and be there and cry with me, or be willing to answer late night calls or anything like that, I know that they know I’m going through a hard time.” * * * “It’s a lot easier to feel like nobody understands, and all you really want to do is be alone. So, I think to be with other people shows a lot of strength in a way that I don’t think people would normally define as strength.”
This interview was lightly edited for clarity.
Annie Konzelman is a senior from Burlington, North Carolina who is majoring in Art History and Comparative Literature.
vacancy in the lane Jackie Kenny
the last time i saw our neighbor ben he was dead his high cheekbones were dusty dry his closed eyelids pale in the coffin his old heart had just given up after awhile his body looked nothing at all like the river water that he used to pour out of little clay pitchers nothing at all like the lemon balm growing still beneath his kitchen window nothing at all like his fat orange cat left to sit and prowl on the piano keys in his empty house i want to see whales ben had told me once leaning over the fence that separated our yards frizzy raindrops on his knitted wool sweater he was less old then and i was young his wife had just died of alzheimerâ€™s and he was a homebody who never traveled he saidâ€”wistfullyâ€”ive heard orcas are quite sociable and that kayakers can paddle in circles as soaring black fins glide and dive smooth through their own blue paths Jackie Kenny is a senior from Centennial, Colorado who is majoring in English and minoring in Creative Writing and Comparative Literature.
No scheduled cases for the day. I scrolled through the operating room
schedule and found no scheduled cesarean deliveries on the display. Then, second pass to be certain. After rounding on my patients, I stood at the computer cart and began writing my notes for the day, tipping back my Thermos filled with stale coffee between charts. I clicked through the note template, marking “well”, “improving”, and “tolerating” for all the available selections. I finished early and glanced at the clock—only 6:20 a.m. If I had no C-sections to attend, that would mean at least eight more hours of idling before a dismissal. Running through a list of topics at random, I landed on “Vaginal birth after cesarean delivery” and pulled up a research article.
“Hey, can you let the A.M. attending know I have to go to an emergency
cesarean?” The resident had barely made it through the door to the workroom before shedding his Patagonia jacket, packaging his hair in a surgical cap, and fleeing. I wove through the residents working beside me and trailed him down to Labor and Delivery.
I crept into the operating room, still tying my mask behind my neck and
slid through a huddle of nurses to the foot of the bed where three obstetricians were standing. The patient was splayed out in a T-shape across the operating table, bulging over its edges, with a stream of tears glued to the left side of her face. My shoulders were now square with hers, but my neck was craned to the ultrasound monitor, which was panning across the belly in search of a fetal heartbeat. Then, a heart appeared in the center of the screen, hollow and motionless.
The patient cried out, “Is he alive?”
“Who can we call to come be here with you?”
A nurse handed over her phone and the patient began dialing. “Mom!
38 Chance is dead!” Bawling echoed from the phone, sputtering around the dense concrete walls that disrupted the signal, then a muffled dial tone. “Hello? Mom?” * * *
“Uterus!” the resident called out, prompting the O.R. nurse to record the
time. After a few swipes of the scalpel and a finger poke through the womb, swirls of yellow and scarlet fluid gurgled upwards, streaming over the patient’s protruding sides into the gutters below. I reached forward with the suction line in hand and siphoned the gore from the surgical field.
“Don’t you think that hysterotomy is a bit small?” the attending asked
chidingly. The resident silently shot me a sideways stare, as if to say, “what, like I’m going to break its neck?”
He crouched down, his face inches from the gaping gut, grabbed each beefy
edge of the wound and ripped the margins wider, wider, trembling with exertion. He reached deep into the uterus, spilling amniotic fluid out of the abdomen, and pulled out the limp fetus. Thirty-four weeks grown. The sobbing woman howled out, feeling the relief of pressure down below. The pillow crunched beneath her head as she writhed back and forth. The resident plopped the baby down in the valley between the patient’s legs, clamped the umbilical cord twice, and cut it in a single snip. Out of habit, the obstetrician extended her arm to the baby and shook it forcibly, attempting to rouse it with a latex knead, but it kept silent.
“Would you like to see him?” The obstetrician lifted the infant and held
it up to the sterile plastic shield for the woman to see. “A beautiful baby boy.” The baby’s arms dangled, tinted by a thin, pinkish coat. “Cha-a-ance,” she moaned between sobs. “Cha-a-ance.”
The sterile nurses emerged behind the obstetrician and the baby swung
across the surgical field into their swaddling blanket. As the obstetricians returned to the patient, tugging at bloody muscle and fascia, I gripped the tissue retractor with
39 a cramping hand and watched the nurses wipe off the little boy. They rubbed the cheesy white film from his eyebrows, blushing neck, and ear folds; they wrapped him tightly in a cocoon and placed a pink-and-blue-striped cap over his moist coils of hair. He gently floated forward, between his motherâ€™s chest and the sterile drape. The tangle of hands that held him were careful not to cause a jostle.
Bret Robinson is a third-year medical student from Monmouth Junction, New Jersey.
like acetone to portraits
Paul Smith Younger than the rest of him, both knees still hurt first. The lumbar, the fingers from hauling papers with the kids before school or later working the press during the strike. It’s what my grandmother called general decline before grabbing a tissue or hurting her
Make him comfortable, keep him sound. She got him an easy-access chair which rose up to meet him, smooth and deliberate enough to taunt. The pancreas hasn’t worked in years and still doesn’t. In the chair he flinches at the insulin for the first time. What is that? What are you putting in
Don’t touch me.
Paul Smith is a senior from Asheboro, North Carolina who is majoring in Dramatic Arts and minoring in Geologic Science and Creative Writing.
reflections from an editor Meredith Dorminey
I have been lucky to be a part of this journal from the start with its
inaugural issue back in 2016. It has been a truly magical process to watch it grow and flourish into what is now our fourth edition. Working behind the scenes as an editor has been an amazing experience: getting to watch the pieces come together from selecting them for publication at the start to the completion of the last edit. We have grown in size and recognition on campus over the last two years, and it has been an honor to see it bloom. I am excited to see the journal’s progress in the years to come.
When I started on the journal two years ago, I only knew the cookie-cutter
definition of the health humanities—the intersection of the humanities and sciences to better contextualize the human experience. But being a part of the journal has allowed me to learn about the health humanities and experience it first-hand when editing each submission to its full potential. From narratives to poetry to research, each journal is filled with stories of loss, of learning, and of growth. I’ve seen stories centered around the doctor-patient relationship and ones that focus on the family’s perspective instead. Reading these stories helps me to understand what it will be like to work in the healthcare field one day. I’m certain that my work with the health humanities has taught me to better empathize and see things from the patient’s view. People are much more than their diagnoses and symptoms—they have stories to tell; all we have to do is listen.
Meredith Dorminey is a senior from Raleigh, North Carolina who is majoring in Biology and minoring in Chemistry and Neuroscience.
Working with the Health Humanities Journal over the past year has been an
amazing opportunity to continue my involvement in and expand my understanding of the health humanities field. The summer prior to coming on board the journal’s team, I was working in health law, often shadowing the lawyers who represented nurses or doctors. The clear emotion the doctors and nurses exhibited throughout the cases I watched made it very clear to me how passionately these men and women feel about their careers and the patients they impact daily. Yet, as I watched several of my own family members come to terms with serious medical needs ranging from cancer to dementia over that summer, I also saw the obvious toll the hospital system took not only on them, but on the family members tasked with supporting them through the process of navigating their health. Long hours, confusing terminology, and fear of illness seemed to create disconnects between my family members and their doctors that felt immense to me. Which is why the health humanities, and people like the team at the Health Humanities Journal who support them, are important to me. Working with the health humanities is a small way I can work to create a deeper understanding of the patient and medical professional experience, and I firmly believe that with deeper understanding comes better care.
My teammates at the Health Humanities Journal have done a wonderful job
of including the voices of patients, aspiring doctors, and other medical professionals to create a product that builds this type of understanding. Working with the journal to explore the trials of living with illness, the difficulty of medical professions, and the minutia in between both has given me a much broader view of what it means to work in the medical field, and allowed me to view the men and women providing my family with care in a more compassionate light.
I’m also leaving the journal with a new understanding that there are many
people around us who are sick. Illness is not something that is always visible in our society. I’ve found that often we conflate lifelong illness with things like cancer, but, as I’ve seen in the journal, people live everyday with illnesses ranging from IBS to
44 cystic fibrosis, and often they carry these burdens in relative silence. Iâ€™m thankful to have had the chance to work with the journalâ€™s authors to put stories like these on the page, and I hope they will have a similar impact on the rest of our readers.
Madison Schaper is a senior from Metuchen, New Jersey who is majoring in English and minoring in Creative Writing and Writing for the Screen and Stage.