The Loom 2019

Spring 2019

The Loom

Paths of Seeing The Lilian and Benjamin Hertzberg Palliative Care Institute Creative Arts Journal by patients, families, caregivers, and staff.

Table of Contents Anonymous . . . . . . . . . . . . . . . 4

Paul Esposito . . . . . . . . . . . . . 22

Sophia Benavente Sayani . . . . . . . 5

Johnny Bel and Susan . . . . . . . . 23

Shamya Ray Wilson . . . . . . . . . . 6

Robert Lager . . . . . . . . . . . . .

Aurora Jackson . . . . . . . . . . . . . 7

Kevin Johnson . . . . . . . . . . . . 25

Kenny Foster . . . . . . . . . . . . . 8-9

Margaret Ruttenberg . . . . . . . . 26

Robert Lager . . . . . . . . . . . . . . 10

Paul Esposito . . . . . . . . . . . . 27

Mike Flynn . . . . . . . . . . . . . . . 11

Sidd Foster . . . . . . . . . . . . . . 28

Kevin Johnson . . . . . . . . . . . . . 12

Kimberly Hong . . . . . . . . . . . . 29

Louisandro Mercado and Marisol . . 13

Sara Suleman . . . . . . . . . . . . . 30

Elizabeth Sullivan . . . . . . . . . 14–15

Lasharn Harris . . . . . . . . . . . . 31

Aurora Jackson and Kyann James . . 16

Peter Bell . . . . . . . . . . . . . . . 32

Robert Lager . . . . . . . . . . . . . . 17

Suzy Goldhirsch . . . . . . . . . . . 33

Ech . . . . . . . . . . . . . . . . . . . 18

K’maia Leoni Allen Martin . . . . . 34

Mike Flynn . . . . . . . . . . . . . . 19

Sophia Benavente Sayani . . . . . . 35

Anonymous . . . . . . . . . . . . . . 20

Lasharn Harris . . . . . . . . . . . . 36

Shanna Cole . . . . . . . . . . . . . . 21

Sophia Benavente Sayani . . . . . . 37

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Karen Elder . . . . . . . . . . . . 38-41

The front and back cover images reflect artwork created by interdisciplinary team members of the Lilian and Benjamin Hertzberg Palliative Care Institute in 2018.

The Loom Staff . . . . . . . 22 . . . . . . . 23

Lauren D. Smith, MPS, LCAT, ATR-BC, CCLS

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Editor-in-Chief

. . . . . . . 25

Wendy Borges

. . . . . . .

. . . . . . . 26

Design and Production

. . . . . . . 27

Karen Elder

. . . . . . . 28

Guest Patient Editor

. . . . . . . 29

Olusegun Apoeso, MBBS

. . . . . . . 30

Guest Editor

. . . . . . . 31

Rabbi Edith Meyerson, DMin, BCC

. . . . . . . 32

Contributing Editor

. . . . . . . 33

Amy Newman, RN, BSN, CHPN

rtin . . . . . 34

Contributing Editor

ni . . . . . . 35

R. Sean Morrison, MD

. . . . . . . 36

ni . . . . . . 37 . . . . . 38-41

Ellen and Howard C. Katz Chair, Brookdale Department of Geriatrics and Palliative Care

Introduction “His words lights my path and orders my footsteps”

Adapted from Psalms 119:105

Because palliative care helps improve the quality of life for patients and families who are facing the stresses of serious illness, we feel that the ‘art’ and practice of palliative medicine should be an integral part of the management of all disease states at every stage. After all, the need for effective symptom

management, good communication skills and the establishment of the goals for patients and their families is relevant at every stage of every disease treatment.

The ability to successfully cope with the stresses of illness, grief and loss, is not only related to what we know, but also how we think and feel. The various

disciplines of the palliative care interdisciplinary team (IDT)- Spiritual Care,

Social Work, Yoga/Massage Therapy, Music and Art Therapy, Child Life and other forms of complementary care-help provide insight, enlightenment, and

knowledge. The practice of mindfulness, for example, or seeing ourselves as we really are, may open the door to usher in better coping skills and comfort.

Doesn’t the navigation of our way out when we are lost start with the ability to

identify where we are now? Many other creative modalities that you will see in this volume- legacy work, art, poems, reflective writings and music— also promote healing by giving birth to hope, expressions of love and comfort.

The importance of what we learn to ‚see‛ through the lenses of past and present experiences, relationships and religious, spiritual and cultural beliefs cannot be over-emphasized. The theme ‚Paths of Seeing‛ appropriately describes one of

the key components of palliative care, and I consider it a profound privilege to introduce this edition of The Loom.

Olusegun Apoeso, MBBS

Medical Director, Wiener Family Palliative Care Unit at the Mount Sinai Hospital

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Letter from the Editor Creating this issue of The Loom has been a labor of love. As I organized these pages, I recalled so many special moments spent with patients and their

families as they shared sacred family stories, moments of pride and times of

unbearable loss. I remember sitting on the floor with children surrounded by crayons and writing extraordinary letters to loved ones in a special language only known by children and their most special people – their grandparents,

parents, aunts and uncles. I recall the deliberate mixing of paint and the brush passing across heavy paper, absorbing the saturated water and providing calm

and ‘flow’ in a moment of worry. I have sat with patients and families in silence, patiently waiting until the image materialized. I have held many hands and

sculpted many lasting impressions of those we will always remember and carry

close to our hearts. I have delighted in the secret poets that have emerged in our

community and the creativity that has overflowed throughout the last year to fill our issue with the voices and images of our vibrant shared experience.

The Loom is a reflection - of love, of hope, of grief, of joy, of memory, of time, of relationship. It comes from patients, families, caregivers, staff and students,

alike. Thank you to every person who contributed to this beautiful issue. The

‘paths’ we find ourselves on may not always be familiar or comfortable, but my hope is that we will continue to travel with each other safely and with trust, compassion and generosity of spirit.

This spring issue of The Loom, ‚Paths of Seeing,‛ is dedicated to all those who carry the light of creativity with them, as we all find our way.

Lauren D. Smith, MPS, LCAT, ATR-BC, CCLS Licensed and Board Certified Creative Arts Therapist & Certified Child Life Specialist

The Lillian and Benjamin Hertzberg Palliative Care Institute Brookdale Department of Geriatrics and Palliative Medicine

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Untitled

Anonymous 4

Maybe I Can Hear

Sophia Benavente Sayani

5

There are two worlds and one side is horrible and one side is good.

One side is hungry and one side is not hungry. In the middle there stands a woman With hope to get to the not hungry side. But before she reaches her destination she has to accomplish a mission on the hungry side. I don't want to see that side.

The Door to a Miracle

Shamya Ray Wilson

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The Door to a Miracle

Aurora Jackson

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Cry Every Day

(Homage to Kyla Aesha Foster) April 11, 2016 8

You learned to fly, while I stayed on the ground I felt so lost as you became heaven bound I search the clouds and sky for your face, Believing You are every place, like God We Loved and learned and laughed Smiled and joked, laughing at mine Still kind when you spoke Seeing your face in the cloud A silent voice, silent smile so loud Your life name whispered Been here before, wish you’d come back again We loved bouncing to Bob and Stevie Love you and cried every day The hurt burnt amid frozen tears I say your name every day Please never go away I thought I saw you the other day And almost cried you away ‚Gets easier‛, they say I’m waiting, praying, yearning for that day My love makes the grief hard, hard to put at bay But now I don’t cry, not every day (Daddy)

Cry Every Day

Kenny Foster

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Untitled

Robert Lager 10

Let peace fill your heart, not ugliness...

Mike Flynn

11

I am…human.

I feel….sad.

I need…love.

I have…resilience.

I wonder…if I have another year.

I hope…I can find peace.

I am … present.

I feel…melancholy.

I need… attention.

I have…a way to move forward.

I wonder… if I will ever fall in love again.

I hope… that I can find peace in every step.

I am…sweet like a fresh apple.

I feel…sad because today I talked with the doctor about how much longer I have, and I’ve never broached that topic before.

I need…to be touched and loved and feel loved in a physical way.

I have…spirit.

I wonder…if I can conquer one more dream. For me, I believe I’ve conquered so much and if I can conquer this.

I hope…my appetite comes back.

I Am

Kevin Johnson 12

Anubis

Louisandro Mercado and Marisol 13

Elizabeth Sullivan 14

Elizabeth Sullivan 15

Untitled

Aurora Jackson and Kyann James 16

Untitled

Robert Lager 17

Standing here in silence as we pay respects in formal. Am I in a nightmare or is this my life’s new normal.

Moving in slow motion, as if I was in space. Everyone I look upon I swear I see your face.

Looking for distraction, headed back to my routine. Thoughts of your last days fill every second in-between.

I said how much I loved you and held you as we cried. Our special bond will live on strong inside me till I die.

Final Days Remembering you in everything We see, We hear and touch Lord only knows how we are missing you so much

Since your depart, with tears we've cried, the oceans have been filled.

If we should live a thousand years, our hearts would miss you still.

Remember You No cure for your illness, It is, now gods will. Long hours and days pass, But you hold on still. Perhaps it’s because, You want to make

sure. We have time to accept this, grow strong to endure. Although this will break us, More than you'll ever know. It is time for your peace now. It’s ok to let go.

Letting Go

Ech 18

Reflections Unto Myself

Mike Flynn

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‚Americans do not like dark.‛ Lite sells.

Not just on television.

In medicine, too.

Big banners hailing miracles.

With Doctors in the dark.

Telling the truth.

No one wants to hear.

Truth in the Dark

Anonymous

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Untitled

Shanna Cole 21

Nobody else knows the things we've been through They ask if there's something that they can do They offer their thoughts: they offer their prayers But sometimes it seems, as if nobody cares We can make it Believe me honey We'll be playing with the house's money All we need is me and you We've still got a lot of work to do Around here Give thanks to the Lord as you greet the new day As everyone else would rather complain They look in the mirror and think of themselves.

When all we need is our love and our health We can make it Believe me honey.

Maybe someday this will all seem funny Hold my hand I'll see you through it There's work to do and you will do it Some people will say, Everything will be fine But now our life is just one day at a time I long for the day we can walk on the beach Though right now that all seems way out of reach We can make it, believe me honey We'll be playing with the house's money So let's say a prayer and light a candle God only gives us what we can handle

Nobody Else Knows the

Things We've Been Through

Paul Esposito 22

‚Never regret anything you have done with sincere affection. Nothing is lost that is borne of the heart‛ -Basil Rathbone

‚True friends are like the stars; you don’t always see them but you always know they are there.‛ -Christy Evans

Our Favorites

Johnny Bel and Susan 23

Untitled

Robert Lager 24

When I think of water, I remember a motel that my family stayed in Morro Bay. Its claim to fame is that it was the Gibraltar of the Pacific. The motel was a 1930s or 40s motor inn, but it also had little houses – one we got every year – we stayed about a week – and they had a pool there and it was my favorite pool I’ve ever been in.

It was white and it was surrounded by glass and the fog would come in all of a sudden. It was sunny, nice and warm, and the fog would come in and it would surround the pool and you would just be floating. I remember sitting in the pool for hours. It wasn’t very deep or shallow. It was a celestial and almost heavenly kind of place. The fog would go away. We went there two or three times, maybe more.

We would sit there in this heavenly pool and there was nothing quite like it.

When I talked to my brother a while back he mentioned he had gone back to Morro Bay and the hotel was gone.

A Pool a Fog

Kevin Johnson

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Grandma’s Rug

Margaret Ruttenberg 26

The promises we made on that evening in July, Were never meant to fade, now I’m left to wonder why, I’m still standing here and part of you is gone.

The heart won’t disappear and we’re forced to carry on.

A kingdom and two crowns, a castle in the sand.

It all came crashing down, never ending like we planned.

I’m still standing here, with no reason and no rhyme.

Left alone to face the fear, I live one day at a time.

Cardinals in the yard and feathers on the ground.

Memories of the past, some are lost and never found.

Feathers on the ground and cardinals in the yard.

Like a soldier in the night, I just can’t let down my guard.

The sun will rise again, I’m thankful for the day Though never knowing when this pain will go away If you could read my mind, if I could see your smile I would leave it all behind, just to see you for a while.

Paul Esposito 27

Heal my heart and make it whole again Heal my spirit so that energy flows freely Heal my body so the positive shines on all I meet Heal my mind so I will always remember That I carry you with me, a part of my body, my spirit and my heart Make me whole so that the unfathomable does not constrict my mind..... For I know She is safe, she is loved, she is free August 3, 2017

My Prayer

Sidd Foster

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A few of my Favorite Things...

Kimberly Hong 29

‚Henna design is a special part of my childhood. Want to dedicate this piece to my mother who has been my strength and taught me this art.‛

Sara Suleman 30

I remember the fear……

The gut wrenching feeling I had on September 11th 2001 when my husband called me and told me he was in the lobby of the South Tower of the World Trade Center helping guide hundreds of people out of the lobby to safety zones. Ten minutes after our phone call, the South Tower fell. I did not hear from my husband for 3 days. I had to be the parent to both of our daughters to ‚save face and act as if everything was fine,‛ not knowing if their father was ever going to return home. Those was the longest 3 days of my life.

Thankfully, he returned to us safe and sound so we thought……

Fast forward to November 2018…

I remember a fear……… of watching my husband going into cardiac arrest because of the illnesses he contracted from being a first responder 17 years earlier at the World Trade Center.

One event, ripped me to the core of my soul, not once, but twice. I have never felt so weak, so helpless, so vulnerable as I did on September 11th 2001 – September 13th 2001 and November 12th 2018 – November 26th 2018.

And today, February 7th 2019 my husband is still in ICU going through the trials and tribulations affiliated with that fateful day.

The fear of helplessness and despair is the most hurtful of emotions one can suffer. The feeling of hopelessness is so discouraging. The fear of the unknown and unexpected every time I walk into the lobby of the hospital and get into the elevator while going to the 5th floor to see my husband. Not knowing what I will find or see when I arrive.

I remember a fear….. every day for now…hopefully not forever.

Lasharn Harris 31

Untitled

Peter Bell

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Cherry Blossom Time

Suzy Goldhirsch

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My life is just starting Yes it hasn’t finished yet.

Yes, I have a dog! Yes it is a pet!

Life is hectic, yes I know, That’s why I have to learn So I can grow.

My name is Kmaia I am a queen And I am bossy So don’t play With me.

The Life Introduction

K’maia Leoni Allen Martin 34

Angels in the Sky

Sophia Benavente Sayani 35

Love shows itself by action………….Words are wonderful and

can calm the soul when used correctly but, actions, make the words, advice and opinions come to life. Telling someone

you love them every day is a wonderful gesture, but showing them is the most rewarding gift you can ever give someone.

Some people promise you the world on a silver platter.

Therefore, gaining your trust with their words. Unfortu-

nately, when this thing called ‚life‛ sometimes takes a turn for the worst, those words are all that is offered. There is no action or cause to make that person feel the love you have for them because, you refused yourself the opportunity to

step out on faith and be there for them physically, mentally and spiritually.

Love shows itself by your compassion and selflessness.

Love shows itself by never having to say the word constantly ‚LOVE‛ but by showing it on a daily basis by your actions.

Never complaining and always being thankful that you were blessed enough to have the ability to have someone to give true, unconditional love to.

Love shows itself by……Knowing and understanding the true meaning of LOVE.

Lasharn Harris 36

Like An Endless Rainbow

Sophia Benavente Sayani

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3/14/18 Dear Cancer, After all that I've been through in my life, how dare you? You showed your face in a time in my life when my youngest was graduating high school and going to college. I want you to know that if you were something tangible, something I could get at, if Cancer was a person, I would spend a lot of time trying to figure out how to do physical harm.... how I could hurt you.... the most cruel payback - torture. I know no other way to describe this.

But instead of wanting to hurt you, you have taught me to be selfish.

In the beginning, cancer taught me to be really honest with those I love and even those that I didn't care for. You taught me I could no longer play the game because of the cancer in my body. You made me a better woman because I didn't have the time to deal with what I didn't want to deal with.

It's almost as if you became a convict that murdered my entire family and now I'm sitting and looking at you and saying to myself that I'm not going to let you spend my time acknowledging the loss - I'm not going to let you have that. It is very important to not allow the hate of the disease to be bigger than the love and the desire and the want and need to allow those around me to love me.

Dear Cancer - you have made me that type of person. Because of what you have done to me as a woman - you have made me a much more 38

loving, understanding and compassionate woman - probably the biggest cheerleader for all those I love - type of woman. It is only because of the cancer in my body that I am able to do that.

Prior to Cancer, I was the epitome of a strong woman. There was no way that you would see any type of vulnerability. There is a BC and an AC. Before Cancer and After Cancer. And I like the AC Karen much more than the BC Karen, because AC Karen is much more vulnerable.

I want to be rescued now. I don't want to do this on my own. You have taught me that I have to have a support system and that I am able to have a support system.

BC Karen: single mom; job; I don't need a man. AC Karen: fell in love; there is nothing she wants to do on her own. Not even go to the doctor. I would not have made this journey without my team.

This is the season of being with a team around me that understands that living with Cancer for nine years, I needed stronger medications.

It is not just the disease the team is worried about.

I realize there is another season - the next season - when I might be in hospice. I know in the end, Cancer is going to win. There are not that many fights that you get into knowing that the opponent will win.

Cancer pushes people away - it will also put some of the strongest people you can ever meet into your life. If you're willing to admit that Cancer hurts and takes everything out of you to go on, Cancer also 39

gives you the strongest, toughest, and compassionate loving people that you'd never have met if you didn't have Cancer in your body.

I am so grateful.

Dear Cancer, you haven't only changed my life, but you have changed everyone else's life around me. You are almost a divine intervention.

I can't stay stuck on the why - I have to allow the times to say I'm mad as hell - "why did you choose me; why me?" But why not me? If you asked me where you should go - there isn't another person I'd wish you upon. In the beginning I couldn't think about anything but dying.

If I had not reached out, not only for cancer but for my mind, there is no way I could be here. If you're not mentally ready to fight, then physically it’s not going to work.

There is going to be a day when you wake up and the first thought you have is not, "you have cancer." It might be, "what am I going to have for breakfast? or Trump actually won?!" There are days where it takes a moment to remember... I'll have milestones and I'm going to win quite a few battles, but I'm not going to win the war. Unless there is a cure. In any war there are heroes and some that survive. I strongly recommend to anyone diagnosed that if you don't treat the mind, treating the body is not enough.

Dear Cancer, There are days when I felt you sitting on top of me, right on my chest. This is a day where I have won a battle. I see you,

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Cancer, my friend in the chair across from me and today that chair looks smaller.

You forced me to take care of myself and put myself first - Cancer taught me how to put me first.

You have aged me. In terms of wisdom, and what I think about - how I want my funeral. You made me put in order what I needed to have in place. I can focus so much more now that I have the right team in place: medical, psychological. It takes so much stress off of me.

Dear Cancer, it has been nine years. I am 52 and I am still here.

Karen Elder

by Karen Elder Guest patient editor

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For more information and to inquire about submissions to The Loom please contact:

Lauren.Smith@mountsinai.org

The Loom is brought to you by the generosity of individual donors who support Creative Arts and Child Life Therapy at the Lilian and Benjamin Hertzberg Palliative Care Institute. The Institute offers this program to all patients and their loved ones at Mount Sinai Hospital free of charge. To ensure that all patients and families continue to have access to this therapeutic resource, please consider making a gift to the Hertzberg Institute.

If you are interested in supporting this program, please contact

our Director of Development Natasha McCabe at (646) 605-8821.