Guest Blogger: Brianna Barrett

When That Illness From Your 20’s Becomes a Lifelong Artistic Mission

Cancer survivor Brianna Barrett writes “After This Episode,” a short play about a young adult cancer survivor, to be played by a fellow cancer survivor at the NW Narrative Medicine Conference.

I want to change the way people think. Whether it’s books, movies, theater, music, or any other medium, the arts hold incredible power to shape societal views. There are a lot of stories we’ve heard before. If you’re looking for it, you’ll notice there are certain types of characters we see often enough that they become part of our accepted cultural narrative. In my own writing, it’s important to me to focus on the stories or characters that I don’t feel are necessarily getting a fair shake in mainstream media.

How I Got Here

I was diagnosed with cancer in my early 20s. One of the many things a person suddenly becomes aware of when diagnosed with cancer is how disappointingly few relatable depictions of the young adult cancer experience can be found in existing media. Cancer patients are often seen as fragile, sage-like characters who die leaving friends and family with some valuable life lessons. I’ll just say it: that doesn’t feel so warm and fuzzy when you’re the one who’s sick.

Bizarrely, depictions of young people who have actually lived though cancer and are now getting their lives back together are quite rare. As a person fighting cancer pretty early in life, you look at the stories out there and you start to feel like there aren’t a lot of blueprints for what you are supposed to do with your life after you get through treatment.

The long-lasting effects of being a survivor (physically, emotionally, financially) are often-overlooked subjects that are rich with the kind of drama perfectly well suited to theater or film. Not only that, but in not telling these stories we are overlooking a large and growing population of young people who share this experience. When we talk about diversity, and bringing more diverse perspectives into the world of arts and entertainment, there is a conversation to be had about how we depict people with chronic illnesses or people who might be differently abled. I’m not talking about the “look how hard some people have it” angle that is inspiring to people who don’t have to deal with the same problems. I’m talking about the stories we can all relate to: our friends who are hilarious and messy and complicated and face uncertainty and insecurity and occasional moments of levity like everyone does.

Hitting Close to Home

Both personally and professionally, I’m lucky to have had the opportunity to connect with a lot of young adult cancer survivors and hear a lot of important personal stories. This play was born out of dozens of intimate, thoughtful conversations I’ve had with fellow survivors from across the country. While the story is fictional, it’s certainly also informed the dynamics I noticed in my own life once I had enough distance to be able to reflect on everything I’d been through. Whether you personally are sick, or a friend is sick, or a family member is sick, everyone involved in a medical crisis is dealing with an inherently stressful situation and everyone copes with stress in their own ways. Not all of those ways match up and that can lead to friction or misunderstandings that can be hard to address. This is one of the themes I wanted to explore in writing this piece.

It is with all of the gratitude and admiration in the world that I get to say I’m collaborating on this project with someone who is almost eerily well-qualified for the job of portraying a cancer patient in a play written by a former cancer patient. Rae, the young cancer survivor in my play, will be played by Brianne Whitacre – a remarkably talented and delightfully uninhibited actress from Portland who actually lived in a patient housing apartment while receiving treatment for cancer in her 20s, much like the character she portrays in this play. We have these amazing moments in rehearsal where she’s all, “this is how I remember always having to put on my shoes while I was in treatment,” and it really adds this whole other layer of subtext to the show. The insight and honesty she is able to bring to this role is reason enough to register for the conference – not to mention the phenomenal work of Theresa Park (who plays her long-suffering older sister) and Melanie Meijer (who plays her cheery childhood best friend). I’m thrilled to have such a capable, compassionate group of women tackling this project with so much energy and heart. It will be a very special, very unique performance and you don’t want to miss it.

Guest Blogger: StoryCorps + OHSU

Screen Shot 2017-10-08 at 7.50.31 PMStoryCorps Legacy: Through the cancer journey with Josh

You’ve likely heard the compelling conversations produced by StoryCorps, the national nonprofit organization whose mission is to record, preserve, and share the stories of Americans from all backgrounds and beliefs. But did you know that StoryCorps has now partnered with OHSU to bring to life the stories of OHSU patients, caregivers, healthcare professionals, and volunteers?

During this year’s NWNM conference, Jessi Broberg and T Timbreza, employees in the OHSU Patient Experience department, will facilitate a workshop focusing on the healing power of storytelling through the mission of StoryCorps Legacy and their partnership with local and national healthcare organizations.

In addition, two StoryCorps recording sessions will be held during the conference. If you’re registered for the conference and might be interested in recording a StoryCorps interview on October 21 or 22, please send an email to nwnmc.pdx@gmail.com.

Below are a few words from Jessi and T.:

Grief. Elation. Surprise. Frustration. Optimism. Myriad emotions fill the hearts of those whose lives intersect with healthcare. Each of those individuals – patients, loved ones, care providers, and researchers alike – has a story to tell and the OHSU partnership with StoryCorps Legacy is an opportunity to do just that. Participating gives people the opportunity to reflect, in an open and safe space, on the things that are meaningful to them. It allows individuals like Josh Brenneman and his mom, April, to capture and preserve some of their experiences in an audio recording.

The youngest of five children, Josh was diagnosed with Ewings Sarcoma in 2004 at the age of four.  Now 17, he and his mom sat down and discussed this diagnosis and the impact it had on their lives and the community that rallied beside them. Listen to their story here.

This edited story is an example of the type of work we’re privileged to do at OHSU. We have the honor of being facilitators of and bearing witness to the powerful stories told during the 40-minute interviews. We believe in creating space for the experience of others, and that sharing stories that inspire and connect us are some of the greatest gifts we can give.

We hope you’ll join us during the conference as we share learnings and challenges in listening for the multiple stories within the audio recording, understanding the process of honoring the integrity of the story, and identifying the components that tell the most impactful story possible.

Guest Blogger: Marcy Cottrell Houle

Marcy Cottrell Houle is a professional wildlife biologist, national speaker, and award-winning author of four books. Her most recent book is The Gift of Caring. Houle will be a keynote speaker at the NW Narrative Medicine Conference, October 20-22, 2017.

A LETTER TO THOSE ATTENDING THE NW NARRATIVE MEDICINE CONFERENCE

Dear Friends:

Houle Author photo

Keynote Speaker: Marcy Houle

I am looking forward to meeting you on Oct. 21 when you attend the NW Narrative Medicine Conference!  Its theme is exciting and new, and will equip us all to become effective messengers on a very important mission:  improving the quality of life for our loved ones, for ourselves, and for those whose care is entrusted to us.

So how does “narrative” do that?

Narratives can be expressed in all sorts of ways. Through art, music, words. As an author, of course, I love words.  I see how even the simplest words, strung together, can build up images that have potency and can direct us into action.

For example, realtors have a phrase they routinely refer to.  Three words are used to promote prime real-estate: “Location. Location. Location.”

I offer that there are three words that doctors, nurses, social workers, therapists, patients, caregivers, and families could use as a guide in providing exceptional health care: “Communication. Communication. Communication.”

Unfortunately, as many of us know, that often is not the case.

Rather, what happens in discussions among providers and patients is this:  Both sides of the health care equation are speaking different languages – but with no interpreter. This “great divide” in dialogue often leaves patients and families frustrated and confused, and their busy, harried providers at a loss to understand why their patients don’t get what they’re saying

How are we to bridge this fissure in today’s too-often fragmented health care delivery system?  How can earnest providers give the kind of quality care they want to, and patients feel their needs and concerns are being heard?

Well, having lived through this scenario the hard way – seeing my wonderful aging parents fall through the cracks of the health care system over and over, and not knowing how to help them – I finally found something that worked.  I didn’t learn it all at once. And a lot of it only happened after my parents had passed away. But the lessons I discovered are powerful and have made a great difference in my life and that of many others.

I learned the best way to find a connection between us is to slip into each other’s shoes for a moment, and try to see life from another’s perspective.

The easiest and most vivid way to do that?  Sharing our stories.

Moreover, when these stories can get into other people’s hearts and minds, then people are moved to action.

The result?  These stories can make life better for others.

Sharing personal narratives has the power to improve quality of care by connecting physicians and providers and the families they care for by making inroads of understanding.  Stories can help people not feel alone, and they can also inspire positive action. 

The Gift of Caring: Saving Our Parents – and Ourselves – from the Perils of Modern Health Cares is the story I wrote after living through a 17 year journey of caring for my mother and father.  It is the narrative of the struggle we endured to try to ease their pain when they were suffering as they aged.  Through time, we saw health care at its lowest ebb … and also, at its best. Many times it was a battle – a battle that thousands upon thousands of families find themselves in, and not knowing where to turn.  Many times, people just give up.

I’m here to say: Don’t give up.  The Gift of Caring has another story running through it, too. Co-author, Elizabeth Eckstrom, MD, MPH, MACP, and professor of medicine at OHSU, tells a story, not of despair, but of hope.  As I learned, and we jointly explain, there is a different way to age! One of meaning, dignity, purpose, and greatly reduced suffering. This narrative tells of the strategies we can use – whether physicians, nurses, all kinds of providers, as well as seniors, families and caregivers. With the proper knowledge, as transmitted and actualized through stories, we have the opportunity to reduce much of the misery that older persons experience. 

I know that.  I have seen it.  And the thrilling thing?  From what we are hearing, these stories are affecting change.    They are calling people to action. And I suspect that’s why many of you are coming to this innovative and important conference — because you want to see changes to the health care system, and to promote high quality of care, for our patients, our loved ones and ourselves. On some intrinsic level, you understand that personal narratives and telling stories is a powerful way to begin that action. They pull us in.  They make us see another side to the story we may not have thought about before.  Most of all, they make us connect, as human beings. 

Isn’t that what it’s all about?

I know each of you is going to make a difference. 

Warmest wishes,

Marcy

Guest Blogger: Charlene Happel

1200 - glory bound - january 2017Charlene Happel, glory bound, 2017, water and ink

Who am i….to stand for creativity?

I believe that art is medicine. That creativity allows you to tap into the power of your heart in a way that defies logic. And that accessing your ability to create is one of the keys to healing. Art is how i fly.

I have been an artist/creator for many years. The desire to create has been an important part of me for as long as i can remember. Prior to my cancer diagnosis and treatment, i experimented with printmaking and painting as a respite from the overflow of thoughts in a day. That part of me was put on hold as i maneuvered life during treatment. After my treatment was complete, it took about a year for my creative desire to push to the front again. I knew that i wanted art back in my life and that it had to be simple and something new. I wanted it to be grounded in gentle curiosity and based in who i was in that moment, rather than who i used to be. I decided to explore the idea of a daily creative journal.  

I starting with sketching and painting simple designs and images using markers, pencils and watercolor in a travel journal. My creative play quickly turned into watercolor paintings of all types of flowers. Before i realized it, i was painting flowers as though my life depended upon it. Little did i know that there was a deeper truth ready to show up for me. It wasn’t really my life that was at stake anymore, but my heart.

My paintings began to reflect my emotional journey back to my true self. They became the map points of my curiosity and exploration. Each painting a story that reflected some aspect of that exploration. The imagery became more and more abstract as my paintings echoed the essence of my healing. Recently my poetry showed up to add another dimension to the story and deeper meaning to the visual. My paintings have now become more than just the images or the words. They are symbols of my movement through the world and they tell the story of my flight  to home.

The Crow (wingspan)

Who am i
To say i want that.
To stand
Here with my heart out.
Needing
To be loved,
And fed
By the beauty and the pain
Of this place.
I am enough
And i am filled
With light and dark
And love.

– Charlene Happel
September 2017

The invitation to be part of this conference, has allowed to me reflect on how my “art as medicine” journey began.  I’m currently developing my own creativity journal, using my paintings and poetry as inspiration with space to write, paint or sketch.  I’ll be one of the exhibitors during the conference and i would love for you to come by and say hello….maybe we could create something together.  Let’s fly.

charlenehappel.com

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 in Portland, Oregon on October 20-22, 2017. Sponsoring for this event is provided 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