Poetry in Healthcare

By Diane Kaufman

I am a poet and a child psychiatrist. Beginning in childhood and all the way through my now senior years, I have found poetry to be a life saver. It is a paradox that poetry written in words can help convey that which feels beyond mere words to express. Poetry is like magic. It casts its spell by using language in unique ways through a concentration of resonating elements such as but not limited to sound, rhythm, structure, imagery, energy, and intention.

When a teenage patient of mine tragically turned to suicide to relieve her pain, I found myself thinking of her (she remained always close in my thoughts), when given the exercise to write a “poetic progress note” during an online course about creativity. That is how the poem, “What Makes Us” was born into the world. It is a poem about suicide that aims to prevent suicide. The poem was written on Memorial Day 2016. How appropriate. The meaning we give to our memories or perhaps our memories give to us, and how we use our life experiences, no matter what the pain, to grow ourselves further in healing ways, can be a gift of poetry.

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A Life Far Distant from My Own

By Lisa Goren

A Letter

On behalf of the Social Security Administration’s Cleveland Office of Disability Adjudication and Review, please accept our condolences on the loss of your brother and our colleague, Dr. Hershel Goren.

I speak for everyone when I say that our thoughts are with you and your family.

I hope that you find solace at this time, as you learn of the difference which he made in lives far distant from your own.

Respectfully,

XXXX

U.S. Administrative Law Judge

Hearing Office Chief

That’s the letter my dad received in early 2013 two weeks after his older brother’s death.

The Unimportant Details

At 9:30 p.m. on a Friday night in late December, my dad called me.

“Hi.”

“Hi.”

“Uncle Hershel died.”

“Um, what? How? Where? Of what? Can you tell me more information?”

Pause.

Pause.

“Not really. They found him in his apartment. They don’t know when it happened.”

They didn’t know when it happened because he lived alone. He lived in the same one-bedroom apartment in the Shaker Heights neighborhood of Cleveland for 40 years. The only way they knew something was wrong was because of the deal he struck with the building super (I picture him like Schneider a la “One Day at a Time,” but only because Pat Harrington fills in a lot of blank face Every Men in my imagination). The deal was if there were two newspapers outside his door, Schneider should further explore. A neighbor alerted Schneider of the two papers and he promptly retrieved the apartment keys. I can only imagine the feeling he must have had when he put the key in the lock. I know I’m projecting when I imagine my own knotted stomach and shaky hand, while conjuring an image of what awaited on the other side of the door.

The details of what Schneider found are unimportant, as there was nothing horrifying, or tragic (despite the obvious) and only the most certain indication that my uncle died immediately of causes that will always remain unknown, but decidedly natural.

This happened during the weekend before the new year, so arranging a Jewish funeral in Michigan when the body was in Cleveland and ensuring the burial and Shiva could all happen in good time, was a bit challenging, but as is usually the case, things fall into place. At the funeral, I sat between my dad and my aunt, staring at the simple pine box hovering over a six foot deep hole, thinking about how little I knew about the occupant of said box.

The Man

Dr. Hershel Goren completed his residency at the Mayo Clinic, served in Vietnam, spent most of his career as a neurologist at the Cleveland Clinic and in retirement became an expert witness for the Social Security Administration. He was awarded a full ride to Michigan State University and as a debt of his gratitude, started the Hershel Goren Scholarship. A similar opportunity exists for medical students at Wayne State University.

He graduated from medical school and went straight to Vietnam, an experience captured in only a handful of slides, a short diary, neatly pressed uniforms and a prayer shawl Jewish soldiers were told to bring with them to the war in case they never made it home. Members of my family divided up the small number of possessions we found personally valuable, including the reflex hammer neurologists use, which sits on my parent’s mantle.

Hershel never married, never moved, rarely took a new route to work and stopped traveling after 9/11. His Saturday could not be disrupted by family visits because he had a regular trip to the fish market to complete and cookbooks to adhere to in alphabetical order, no less. We imagine those endless weeks of consuming chicken to be the most dreary.

When one lists the details of my uncle’s life, it seems confusing, or sad or monastic or unfulfilled. However, my dad made what is likely the most accurate statement: “His internal life was fulfilled.” While the rest of us are busy amassing large quantities of stuff—bigger houses, nicer cars, iPads, iPhones, full DVRs, children and food, my uncle lived no differently than he did during his four years of residency.

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Storytelling in the Exam Room

By Patricia Kullberg

Mrs. Truong is tired inside, dizzy behind her eyes, and her sleep is no good. There is a buzzing in her chest. The left side of her body feels swollen, her left arm hurts and doesn’t work right. The pain, she says through the interpreter, is very deep. Perhaps worst of all, her bones are cold. Impossible, I think to myself. Yet, how miserable it must be to suffer a chill in such a deep and inaccessible place. She is middle-aged, a refugee from Vietnam and has come to consult me, as her primary care doctor, about her medical problems. She wishes to know what is wrong with her and she wants a remedy. Like all patients, she expects me to re-construct her story in medical terms, to make clinical sense of it in a way that will produce an effective therapy and relieve her suffering.

Her physical examination is normal and diagnostic testing reveals nothing but the minor findings of a well-controlled thyroid condition. She appears, however, indescribably sad. I know what is wrong with her. I see it already at the first visit. In that same moment I suffer the premonition that I will not be able to help her. Mrs. Truong has lost nearly everything dear to her: her husband, most of her family, her community, her cultural surrounds, and her homeland. She’s been cast adrift in urban America, isolated and lonely, with precious little to occupy her time. She is, as most anyone would be in her circumstance, depressed.

Over months of encounters I try to read her as one would read a book, drawing on information from her daughter and the interpreter and my own perspectives on the Vietnam War. I read between the lines of her story, rich with unintentional metaphor and striking for what neither she nor her daughter can or will tell me. I construct a narrative that takes into account the social, psychological, political, and moral dimensions of her illness. What’s the point? My hope is that a more complete and comprehensive assessment will deepen our therapeutic alliance and help me tailor my therapeutic approach to her values, desires, understandings, and circumstance.

But clinical encounters are constrained in so many ways that can sabotage this process. In Mrs. Truong’s case, our respective stories about her illness are embedded in two irreconcilable understandings of disease and disorder. We are unable to breach this gap. The idea of mental illness is too problematic. Her rejection of my story spirals into unnecessary investigations and leads to a therapeutic impasse. I am not, as I had feared, able to help her feel better.

As a speaker for the Northwest Narrative Medicine Project, I will discuss the role of storytelling in the exam room, drawing on narratives from my book, On the Ragged Edge of Medicine: Doctoring Among the Dispossessed, to explore various factors that impinge on the power of storytelling to enhance the clinical encounter. The stories I will tell speak to both sides of the stethoscope, the patient and the practitioner. I expect that participants will have their own stories and perspectives to share. I will pose problems for discussion. I won’t have the answers. But good answers always start with good questions.

Patricia Kullberg, MD MPH, will speak on Tuesday, March 14, 7:00-8:30 pm, in the second floor auditorium of the Collaborative Life Sciences Building at 2730 SW Moody.

The Northwest Narrative Medicine Project: A Monthly Series

Starting Tuesday, January 10, the Northwest Narrative Medicine Collaborative launches a monthly series with a focus on how stories – spoken, written, visual or performed — help shape our experience of healthcare. Facilitated by patients, writers, and healthcare professionals, each 1.5-hour session will share a unique perspective and include an interactive component for participants.

When:

7:00 PM – 8:30 PM

Second Tuesdays, January – June 2017 (Jan 10, Feb 14, Mar 14, Apr 11, May 9, Jun 13)

No RSVP required, but please arrive early. All sessions will begin promptly at 7:00 PM.

Where:

The Collaborative Life Sciences Building

2730 SW Moody Ave.

Portland, OR 97201

Room 3A003A [2nd Floor]

Accessible by MAX Orange Line, South Waterfront Streetcar, and multiple bus lines.

Parking: If you plan to drive, leave extra time to find neighborhood metered parking. CLSB garage parking is available for $4/hour (entrance where SW Meade meets SW Moody Ave)

Who:

We welcome all people interested in the creative exploration of the stories and experiences of health and illness. Healthcare providers, students, patients, caregivers, scholars, writers, artists, performers, and members of the public are encouraged to attend. The series is free and open to the public.

Be sure to bring paper and something to write with and feel free to contact us at nwnmc.pdx@gmail.com with questions or to request an accommodation.

Mom’s New Friend

By Anne Richardson

Part of processing my mother’s unfolding journey with Alzheimer’s has been to write poetry. This was the first poem where Alzheimer’s evolved as its own character and I allowed myself to address “her” directly. Even that took several drafts, as I originally kept myself at a distance (referring to myself as “daughter” not “I.”) Alzheimer’s can be frustrating, dis-empowering, and draining. Reading my poem released my bottled up story and gave back some of the power that “Alzy” has taken away from the relationship between my mother and I.

-Anne Richardson

 

At first Alzy stopped by for occasional visits.

She enjoyed reminiscing and distracting you from

the boredom of everyday retirement, widowhood, aging.

Then she became that new friend who invited herself
along on a trip to the grocery store.
Telling you what you need and discarding your list.

Soon she was inviting herself to dinner, staying for dessert,
watching TV into the wee hours.
She never offered to do the dishes.

Eventually she moved in and she became so familiar—
you forgot to tell your daughter about her.
And she said it was okay to take long naps in the afternoon,
those bills really didn’t need to be paid,
and why take that medication anyway.
She would go driving with you and give you bad directions.

When your daughter found out about Alzy
and asked about why she is taking up so much of your time
you got upset, so she just stopped asking.
And the three of you learn to dance together
in a new sort of relationship
that feels lonely.

Your daughter wonders what happened to your forgotten memories.
Did Alzy shred them?
Put them in recycling? Or maybe they are in the storage unit and
she’ll bring a few back some day.

Some moments you understand your new friend had taken over your life
but the moment passes. And Alzy?
She has days she is generous
and some days she is stingy in
sharing you.

Your daughter wants to ask Alzy if she has a daughter
who is waiting to be her unbidden friend, waiting for
30 years to pass
so she can sidle up
beside her with a case full of pastel
paints ready to cover her
history.

And when she visits with the two of you—it
feels lonely and
she wants to
tell
your unwelcome friend
to
go
away.

 

Polka Dot Pelvis

By Valerie Correa

 I wrote this poem about my bone biopsies for leukemia in one writing after being awoke from a dream in the middle of the night.  I had gone to a masseuse for a massage and was telling him what my “polka dot” scars where from.  It was healing to write about  repeated traumatic experiences and get it on the page and out of my body.  Then, presenting it at the conference was amazing.  It was my first experience sharing my poem in such a public forum.  My legs were shaking, not just from remembering my experience but also the charge from seeing people connect to my experience through my writing.  The validation of a human experience in such a visceral way was verbalized and felt by the audience.  It was life affirming in my healing.  Thank you for that opportunity and the conference was so enriching on so many levels.  I can’t wait for next year’s conference.  It was spectacular.

Polka dots burrowed into my skin
Remnants of intrusion, fear and pain
Memories stained in the skin
Scars
Stabbed in the back
A physical betrayal
Broken
Open with force to dig deep
To find answers
Will I live or die
I breathe
I hold still
The knife hits a nerve
Each time
Traveling down my leg
As if the pain
Is trying to escape down my leg
Out my foot
Charlie horse
My leg spasms
Knowing it can’t escape
I focus
I release,
I pray
Please protect me
Please let this be over soon
Get the information
Coded in my cells
Deep in my marrow
Killing me
And saving me
One more sample now she says
Take a breath
This is going to hurt
As if it hasn’t been excruciating already
I need to break off the bone
Shatter it
Disconnect it from me
That which lets me stand
Steady myself
Now I will crack it open
Break it
Take it
It is gone
To wait
For answers
Will I die
Will I live
This chard of bone
Will tell me
The body knows
But does the spirit?

Polka dot pelvis
Each circle
A mark
Of pain and fear
Splattered on my back
Ten times
Frozen in time
Holding my breath
For fate unknown

Two years past
No more added dots
But each hole
Created instability
I fall, I trip, I lose my balance
Each time I try to exert my past strength
The next day,
I ache, I am sore, I am stiff
Those polka dots remain
Remind me
I’m broken
And the pain has not left me
Polka dot pelvis
Shattered
And
Haunting memories
That wake me up
Out of a restful sleep
Alert me
I’m waiting for answers still
everyday

A message from Rita Charon

rita-charonGreetings from the Program in Narrative Medicine at Columbia University in New York! I so wish I could be with you all in Portland September 16-18 for the NWNM inaugural conference. I am assuming that there will be many more! Looking at the program, I see many of you–Louise Aronson, Elizabeth Lahti, Ellen Michaelson, among them–who’ve been with us at Narrative Medicine Workshops in New York from the very beginning of our work. We started Narrative Medicine at Columbia University in 2000, replacing what we had been calling Humanities and Medicine or Literature and Medicine because, as Elizabeth wrote in What Narrative Medicine Means to Me, it is so much more than simply reading or telling stories of illness and care. It is a philosophy and a practice of care that extends from the deepest interior of the clinician or the patient toward the work we do together. Through our practice, we come to realize what it means to be alive, to be with others, to suffer and to relieve suffering, to be human and mortal–all of it, within these clearings we can open for ourselves and one another.

Elizabeth’s blog, to which I’m responding, represents so eloquently exactly these realizations, as she moves from deathbed to deathbed of a Thanksgiving evening in the hospital, not facing a wall between the living and the dying but rather reaching out her hand gently to touch the veil of delicate silk that separates these two states. This sense of peace and change and endurance is called forth in the image on the conference’s website, the image of the clearing. It is one we, too, have been attracted to, for narrative medicine creates safety, protection, but yet a presence in the real, ordinary world of trees and moss and sky.

The combination of scholarly presentations, clinical observations, individual illness narratives, and artistic performances that I see on the conference agenda rings all the bells, as it were, of the transformations that take place in narrative medicine. My colleagues and I just had a first conference call with five other organizations in New York committed to healing through narrative work to discuss collaborative work we can do together toward racial justice in America. These are the narrative circles that we create–exceeding even health care issues toward seeking means to face conflict, overcome polarizations, and support justice. We see the same forces at work on the part of authors published in our on-line journal Intima and among our graduate students and alums from the Master of Science in Narrative Medicine graduate program at Columbia. Drawn from so many health professions–nursing, social work, veterinary medicine, psychoanalysis, physical therapy, integrative practices–as well as from creative backgrounds, these students and graduates and colleagues are transforming health care teams and bringing creativity into the heart of health care. Likewise, the narrative medicine work underway with our partners in Paris, in Tokyo, in Lisbon, in Jerusalem, among other sites, confirms our highest hopes that narrative clearings empower persons with a stake in effective and just health care. Remember what Roland Barthes said–“[N]arrative is international, transhistorical, transcultural; it is simply there, like life itself.” Through narrative, we cross boundaries between our sometimes warring health professions, cultural and language boundaries, and boundaries around the very concepts we hold about illness and health to together name the power of the care of the sick, to find relief from the isolation of illness or illness care, to discover the joy (remember, Richard Selzer called it a “black joy”) of helping others by witnessing suffering and illness.

We extend our hearts and minds to the thither coast, happy to have partners and friends joining in creating this field, extending its reach, originating new dimensions of its work. Although I cannot show you what it will look like yet, I want to announce that Oxford University Press is about to release the Columbia group’s new book, The Principles and Practice of Narrative Medicine. It has been a work of love, writing chapters together that not only lay out the philosophical and literary concepts that form the foundation of narrative medicine but also describe the unique teaching and clinical practice made possible through this work. Publication date is November 4, 2016 (four days before the–shudder–election). It was our contribution to the national and international conversation that you, now, in Portland are amplifying and deepening.

Thank you all for this tremendous celebration of an idea and launch of a new network of colleagues. What I’ve learned from the patients in my primary care practice is my North Star, guiding my own work toward being present, recognizing the other, humbly seeking for what might help. I agree that this work brings blessings all around–so that caregivers are graced with dignity, the care is tender and humble, and the sick are not alone.

With deep regard,

Rita Charon

 

 

Scholarship Stories

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When the NWNM Conference committee first met, one goal was clear from the beginning: make the conference accessible and affordable in order to welcome a diverse group.

We have awarded 10 scholarships. We would like to award more.

Please DONATE to support part or all of a scholarship. Click on can’t find the fund you are interested in supporting and write in NWNM Conference #25160

*Minimum donation is $10. Full Scholarship is $125.

“I am not sure I can explain why I want to go into into medicine. Maybe I wanted to be the oncologist my mother never met, the one who read the book she recommended; the one who listened to the time course of her symptoms and how she experienced illness, the one who cherished how she told her story and considered the way the shape of her illness impacted the shape and meaning of her life.  I hope a conference like this one gives me the opportunity to be that doctor.”

-Scholarship applicant

“While I am new to the practice of narrative medicine, I hope to use writing throughout my medical journey– as a processing tool, a means by which to give voice to those unheard, and as a reminder to myself and others of the intimate joys and challenges of being human. As I go through this medical journey, I hope that I will remember that for all I am going to learn about the human body, there is an infinite amount that I won’t know about my patients and how their bodies have experienced the world, what scars may be etched on or underneath their skin; that I will remember that the history of present illness can reach back generations and that it’s therefore going to take a lot more than a behavior change or a pill to treat it.”

-Scholarship applicant

 “I am passionate about mental health and eliminating the stigma that exists against mental illnesses. I am an active volunteer with NAMI, and an advocate for all who suffer from mental, developmental, and intellectual disabilities. I would like to be considered for a scholarship to this conference because I believe that I would benefit as a future medical professional. I cannot afford this conference myself because of my low-paying job and the expensive process of applying to medical school.”

-Scholarship applicant

“I am a creative intellectual, a Crohn’s Disease patient, and a yoga teacher who has explored my experiences through documentary film, narrative satire film, and writing. I am currently focused on cultivating compassion and connection with meaningful conversation and conscious living that empowers patients to embrace their stories and take healing into their own hands. Because my own mind-body-soul healing is largely because of my reflection of my own illness and wellness, I am eager to learn from others stories and impacts on their communities.”

-Scholarship applicant

Please DONATE to support part or all of a scholarship. Click on can’t find the fund you are interested in supporting and write in NWNM Conference #25160

*Minimum donation is $10. Full Scholarship is $125.

 

 

 

Lonely Expats

By Natalie Serber

Serber.bw-29 copy-1A friend and I were talking about cancer. (It pains me to write that sentence.) My friend has had a recent breast cancer diagnosis. (That sentence hurts too.) She was telling me about unexpected feelings that have showed up for her.  Aside from worry and fear and confusion, she wished, she said, “that she didn’t feel so different from everyone else.” I completely understood. When I first received my diagnosis of breast cancer four years ago I spent weeks in a daze, looking out at those who still lived in the land of the healthy. None of you people here at this coffee house, movie theater, grocery store, are like me, I thought.  Of course this outsider status was not reality based, who knows what burdens others carry, but at that time, I felt alone. And, I think my friend feels alone as well.

After some time passed, I began to look around at people in the park, the restaurant, the car beside me at the stoplight and think, have you had cancer? Statistically speaking a good percentage of them probably has dealt with some form of cancer. I wondered; what do you have to teach me?  When I tried to explain this lonely expatriate feeling to my family, they didn’t understand. In fact, I once begged off plans for dinner with friends because I just didn’t want to sit and stare and wonder who had been sick, how many people were likely to get sick, was I the only woman in the room with this tarantula growing inside her breast? When I told my husband I couldn’t bear it, he said, “Not everything is about cancer.” And you see, that’s the thing, early in a diagnosis everything is about the cancer.

Thank god for writing. Going to the page and getting the words outside of my body was essential to my psychic recovery. I had a team to see me through my physical recovery—surgical oncologist, oncologist, plastic surgeon, acupuncturist, physical therapist, yoga teacher—and they were all wonderful, I am so grateful, but they could not do the hard work of exorcising the fears from my body. To do the work of clearing worry from my axons and dendrites, the page was my best friend, the only place where I could say the unsayable. I’m afraid of dying. Why me and not ____________? (You fill in the blank, for me it was Ann Coulter. Not that I want her to be sick, it’s just, I’m much nicer than she is.) In some strange way, I wasn’t sick on the page.  I was clearly examining and trying, not to make sense, no, because there is no logic to a cancer diagnosis, but I was trying to fully witness my experience. Writing about it wasn’t the same as living it. Writing gave me distance. It gave me perspective. Did I feel less alone? Not always. But, I regained autonomy from the disease. And that is what I keep telling my friend will happen for her.  Should she write about her experience it may happen sooner.