Touching moments shared at Story Beat LIVE!

On July 11 we wrapped up our Northwest Narrative Medicine Series with Story Beat LIVE—an evening of intimate storytelling and careful listening. Our group was made up of a variety of individuals from all different walks of life. We were joined by doctors, patients, students, and writers—all of us brought together by the shared experience of how illness and medicine have touched our lives.

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Stacy Brewster kicked off the evening with a guided writing prompt to open up the space and break down the barriers between this brave group of strangers. The room grew silent as everyone started free-writing on the following prompts:

“Between you and me…”

“The first thing I felt was…”

What started off as the same opening fragments branched off in different directions as we chased tangential thoughts and wrote without reservations. We went around and shared our unpolished, messy thoughts, which helped to ease the nerves of sharing deeply personal work later on.

After free-write sharing, participants were invited to read from a piece of writing brought from home. We heard painful illness narratives that were balanced by humor and wit, poems that caught our breath and brought some to tears, and snapshots of distant lives that reminded us that everyone has a story.

Storytellers were given the option to either receive or opt-out of feedback after reading. Everyone who read chose to receive feedback, which led to interesting and meaningful discussions about the pieces shared as well as the unique and shared experiences of illness and pain.

At one point, someone brought up a video made by the Cleveland Clinic called Empathy: The Human Connection to Patient Care, which shows the silent thoughts and lives of people passing through a hospital.

Story Beat LIVE, like the Cleveland Clinic video, is an exercise in empathy. It is an opportunity to peek into someone’s life and understand the challenges you may not be able to see by just looking. Editor Trent T Gilliss of
On Being puts it nicely: “When we relate to those around us by understanding their back stories and their circumstances, we improve the way we work, the way we live, the way we take care of one another, the way we relate going forward.”

Thank you to everyone who showed up and participated. Your brave vulnerability is deeply appreciated and respected. Thanks for sharing.

If you have a piece you would like to share, please consider submitting to our Story Beat LIVE event during this year’s NWNM conference on October 21. More details can be found on our website.

2017 Conference Registration Now Open!

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We are thrilled to announce that registration is now open for the 2nd Annual Narrative Medicine Conference, October 20-22, 2017, sponsored by The Northwest Narrative Medicine Collaborative and The OHSU School of Medicine. Register before September 15th to receive the early bird pricing.

What can you expect? Spend three days learning side-by-side with healthcare professionals, students, scholars, social workers, patients, caregivers and patient advocates. Build concrete skills to develop narrative competence – the ability to absorb, interpret and be moved to action by the story of illness.

INTERPROFESSIONAL

Throughout the conference, participants will be exposed to new perspectives and challenged by compelling stories, often very different from one’s own. Foundational narrative workshops ground participants in the fundamentals of narrative medicine. Through self-selected topical workshops, participants will explore plays, poems and even clay pots as portals to understanding illness. By hearing from and working closely with content experts, and exploring unfamiliar topics and utilizing many different mediums of expression, participants will build their narrative competence and develop new skills they can incorporate into their own work.

ENGAGING

Hear inspiring, dramatic stories of life-changing challenges from keynote speakers and instructors that will forever change how you understand the patient experience. Keynote speaker Bryce Olson, Intel’s Global Marketing Director for Health and Life Sciences, was diagnosed with Stage IV metastatic prostate cancer at the age of 45. Having his tumors sequenced at OHSU was the first step toward a passion for precision medicine and his eventual cancer remission. Since then, he’s found his voice using his love for music to raise awareness for precision medicine with his F.A.C.T.S. (Fighting Advanced Cancer Through Song) movement.

BUILDING BRIDGES

Spend three days reveling in how narrative medicine can be a bridge between caregivers and those facing illness. Hear unforgettable stories from healthcare workers, patients, caregivers and artists. Watch a troupe with Parkinson’s Disease express themselves through dance. Spend Saturday night at Story Beat LIVE—an enjoyable evening of storytelling and spontaneous audience participation.

Check out the complete 2017 Conference Program and then register here. We’ll see you in Portland in October! 

 

You Can’t Tell By Looking. . .

By Stacy Brewster

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I have several prompts I love to throw out the first week of a writing workshop. Where I come from…, Out my window…, On my way here…. Prompts which, when shared aloud, help break the ice between strangers by giving some insight into each person’s perspective, their style, their humanity and how it’s evoked through language. Even with a short write, eight minutes say, you already begin to appreciate all the disparate ways we have of telling stories — with prose and with poetry, in linear ways and circular ways, with wit or surprise or humor or an exquisite eye for detail.

You can’t tell by looking… is another one I pull out early for the way it gently pushes us up to the line of what we sometimes feel uncomfortable naming. Even though I train participants to speak about each other’s writing as though it were fiction — to keep the focus on the words, not the writer — still it is hard to write on this prompt without using first person. And when we share, we are often giving others a glimpse into our own vulnerability, the fear or shame or pain we keep secret, the words between the words.

You couldn’t tell by looking, but in the summer of 2015, my own hands began to fail me. My creative practice was in high gear. My writing group was going well. I was turning out the most intimate, personal fiction I’d ever attempted. Older pieces — a mix of poetry, flash fiction and traditional short stories — were steadily finding homes in literary journals and magazines. I had two bigger projects mapped out ahead of me and was gearing up to facilitate a 10-week writing workshop for Write Around Portland. All this while working a full-time day job. I was completely oblivious as to how serious my carpal tunnel syndrome was or how much further it was being activated by the additional stress I carried in my neck and shoulders.

You couldn’t tell by looking then because at first it was just some numbness in my fingers or a weird thrumming vibration in my arms I didn’t really know how to describe, let alone name. Wasn’t this the price for doing the work, for working my hands too hard — a morning writing practice, commuting by bike, a day job heavily reliant on email, not to mention a normal day’s worth of text and social media? Wouldn’t some exercises, some ergonomic adjustments at home and at work, do the trick? Wouldn’t there be a payoff?

You couldn’t tell by looking but my whole world was gradually being sucked into an acquired disability invisible from the outside. In addition to my arms and hands, two other unrelated conditions flared up as well, the combined force of which triggered more anxiety, more depression, a sense that my entire body was betraying me. I had sought different specialists, tried different remedies, bought new keyboards and mice, overhauled my posture, texted less, responded less to email, tried a two-week electronics diet, stopped biking, stopped doing yoga, stopped holding workshops because my handwriting couldn’t keep pace, even bought a new computer and new assistive dictation software to allow me to control everything by voice. All to avoid a diagnosis I feared and surgery I didn’t want until I’d tried everything, including physical therapy.

My transition from abled to disabled was too gradual and internal for anyone to take much notice who didn’t know me or work with me. My embarrassment, confusion, frustration, impatience, pain and fear had to be churned over, dissected, the script flipped in my own head first so I could accept the challenges that awaited me. You couldn’t tell by looking, but for most of last year it felt like someone had pressed the mute button on me. And, even after bilateral carpal tunnel release surgery this past February, it is still a very gradual process of my volume coming back, prompt by prompt, word by word.

Whether in a short workshop write with strangers or our repeat visits with specialists, we never stop revising our stories, trying in small ways to make visible that which you can’t always tell by looking, to put in words what medicine sometimes can’t. As a patient, I’m constantly reminded that not all medical histories are written down. It is the same with writing. There are always words between the words, and it is our great privilege to listen for them.


Stacy Brewster is a writer, editor, writing workshop facilitator and longtime volunteer with Write Around Portland. He is the co-founder of the Full Frontal Writing Collective and owner and principal of Launch Creative NW, dedicated to helping writers of all levels and stages of their careers get creative projects completed and shared with the world. Stacy co-hosts the Northwest Narrative Medicine Series, a monthly speaker series at OHSU. Join him on Tuesday, June 13th for a mini-writing workshop and talk about what it means to have a creative practice interrupted by illness. More at stacybrewster.com.

 

 

 

 

A Night of Art and Healing with Sharon Agnor

By April Brenneman

Glass and steel artist Sharon Agnor shared her illness narrative as well as her art at the Northwest Narrative Medicine’s Monthly Series on May 9th.

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Agnor has vivid memories of being sick and in the hospital as a child. Struggling with her health on and off most of her life, the decade of her 50s turned out to be the most challenging. Her son was diagnosed with two debilitating illnesses, her mother suffered an aneurysm that permanently disabled her, and short while later, her father suddenly collapsed and died. As if that were not enough, Sharon was diagnosed with stage 3 breast cancer and began the grueling treatment: double mastectomy, chemotherapy, radiation and multiple surgeries.

All the grief piled on top of the other took its toll and Agnor found she could not function. Walking out into her studio, she’d look around then go back inside her home. She knew she needed to process all of her loss. Eventually, her medical experiences from her 50s helped her focus on what making art could do for her. Agnor described some of her large scale sculptures and smaller pieces as she spoke.

“In a work of art, I could contain the problem and control it and figure out how I wanted to regard it. I did not have to be a victim,” she stated.

Next, she guided the participants in creating their own pinch pots using clay. The room grew quiet as everyone focused on their own medical journeys, shaping and controlling the clay. Near the end of the evening, those who wanted to share showed their completed piece and told the meaning and expression behind it. The creativity and shared narratives were powerful.

One participant sighed and said, “This is what I needed tonight.”  

Through her work, Agnor explores the effect of life’s unpredictable events on the human form and spirit. She believes that our ability to sustain loss and heal is both amazing and central to our existence. The stories of these events, both joyous and tragic, are carried within our forms.

Currently, Agnor’s large scale work and rotating exhibits can be found here:
“The Choice” (rotating exhibit) Washougal, WA
“The Wave” property of Cannon Beach, OR, near public parking
“Walking Warrior” (rotating exhibit) Hillsboro, OR
“Earth” property of Washougal, WA
“Renovation” (rotating exhibit) Redmond, OR summer of 2017
“Genesis” (rotating exhibit) Lake Oswego, OR
“Urban Rhythm” property of Vancouver Housing Authority, Vancouver, WA
“Wendy Rose” collaborative work property of City of Vancouver, WA
“Pillars of Fulfillment” collaborative work property of WSUV, Vancouver, WA
“Luke’s Star” in the Luke Jensen Sports Park in Hazel Dell, WA

Northwest Narrative Medicine Collaborative thanks Sharon Agnor for her time, her donation of the materials for the event and her art. www.sharonagnor.com

Participants look forward to picking up their fired pieces on June 13th for the next NWNMC Series, a writing workshop facilitated by Stacy Brewster.

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Poems from the Body

By Judith Barrington

I come to the thrilling idea of narrative medicine as first a poet and second a patient. My first poetry book was published in 1985 and my fifth (a “New and Selected”) will come out next spring from Salmon Publishing. In between, there have been chapbooks, collaborations with artists and musicians, and poems that will never be published but provoked a good round of laughter at someone’s birthday.

I have always been dedicated to the study of prosody (the patterns of rhythm and sound used in poetry) a subject that will never run out of surprises and new insights. One crucial piece of my learning was the strong connection between the rhythms of language (in poetry the rhythms of poetic lines and stanzas) and the sounds of language (vowels, consonants and words), and the body from which those rhythms and sounds emerge. Although I took very few classes in poetry or poetics, I was very fortunate in that my first teacher used a text book that is so amusing and smart that I still use it in my own workshops, although my copy is almost entirely held together with sticky tape. *

Why not buy a new copy? you may ask. Well, there is a good reason that I keep the first edition: a chapter called “Gold in the Ore: the sounds of English” is illustrated by drawings of what we must do with our bodies, particularly our mouths and throats, to produce various vowels and consonants. My two favorite are “Man saying ‘Ugh!’” and “Woman saying ‘Sn—!’” If you try saying these sounds yourself, and slightly exaggerate them, you will see immediately how essential your body structure is to their production. Sadly newer editions of the book omitted these splendid illustrations.

The rhythms of language that we manipulate into pleasing poetry, are not rhythms that exist solely among the words of poems and songs. The fine poet, Alfred Corn, in his book aptly titled The Poem’s Heartbeat, says that the word rhythm comes from the Greek meaning “measured motion.” To hear it, the ear must hear a recurrent sequence of accents at predictable intervals. For many reasons human beings find this experience pleasurable and deeply engaging. Why? he asks. Well, because this regular recurrence is found in contexts that may be fundamental to forming our consciousness: an infant develops hearing before it is born and of course s/he hears the mother’s heartbeat—a regularly recurring sequence. Add to that the steady rhythm of the mother’s walk, experienced as a physical sensation of rocking to and fro. At birth there comes the addition of a new rhythm: the intake and exhalation of breath, which is crucial to the structural form of a poem (where to break the lines, for example). Later there are all kinds of visual rhythms: night and day; a flight of steps from one level to another; repeating patterns on textiles or wallpaper; phases of the moon. Continue reading

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.