Opening Thoughts from Dr. John Evans

Our May newsletter begins with some questions Satia sent me about the work that I am doing at Duke Integrative Medicine followed by my responses. This issue also includes a book review of Stories of Illness and Healing by Sayantani DasGupta and Marsha Husrt, a thought-provoking poem by Greg Brown, Debbie McCulliss's short piece on Narrative Medicine, and Satia's closing remarks about her own Narrative Medicine experience.

Write and be well!

Best Wishes,
John

Interview with Dr. John Evans

Satia: I recall that you were a patient at Duke Integrative Medicine last summer and now you are doing wellness and writing work there. You did not start with workshops but rather with the Immersion Patients who were in the same place you were 9 months before. Tell us about that experience.

John: I started by writing a summary of writing-to-heal research and practice for the Immersion patient handbook. I met with Immersion Patients first thing in the morning of their first day and at the close of their last day at Duke IM. Writing in this way frames and provides a structure for their Immersion experience. Think of the first day's writing as one side of a ladder and the last day's writing the other side. The writings between the first day and the third day are like the rungs on a ladder of experiences toward wellness. The Immersion Patients are given journals and encouraged to write about their experience every day according to the prompts I create specifically for them.

Satia: What were the first workshops you offered?

John: From the beginning, one of my goals was to create a Caring for Caregivers workshop to serve the doctors, nurses, and therapists who work at Duke IM. I suggested we meet in the library, an inviting, intimate space, where we could read and write in oversized leather chairs. Included in this group are a pediatrician, an internist, a psychologist, nurses, and therapists. With this group, I am combining writing-to-heal practices with poetry therapy and narrative medicine approaches.

As word of our writing experiences spread throughout the Duke IM building, others wanted to join our writing groups but could not find time in their schedules, so I decided to pilot an email exchange where the writing prompts are sent to them each week. The email exchange group includes health/life coaches, nurses, and receptionists. Just the interest expressed so far indicates the possibility of year-round writing-to-heal and narrative medicine workshops.

Satia: Can you share a story, from your own experience or perhaps through the work you're doing, where narrative medicine helped build communication and community?

John: Not long ago, I had lunch with Louise Goldstein, Duke IM Nurse Program Coordinator, and Isabel Geffner, Duke IM Director of Communication, to talk about the Wellness & Writing Connections project. After I described the activities and involvement so far, Isabel asked me what I thought I had accomplished. I think we are starting to create a healing community among ourselves that will make the whole of our endeavors more powerful and sustaining. The writing that so many people are doing at Duke Integrative Medicine is raising consciousness of what it means to experience the human condition in all its splendor and agony and to know we are all one in the circle of life. Maybe this sounds corny, to our sometimes cynical ears, but I believe we will create or discover a new language for compassion and empathy.

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Book Review: Stories of Illness and Healing

Stories of Illness and Healing: Women Write Their Bodies edited by Sayantani DasGupta and Marsha Hurst is a powerful collection of essays written by women, with the exception of one lone male contribution, that share a spectrum of personal experiences. From the professional caretaker to the caretaking family member, from the mental to the physical patient, from the curable to the incurable disease and/or condition, in prose and in verse, the stories these contributors offer to the reader are compelling because they are both personal and universal.

What elevates this book from being merely relevant to downright essential is the editorial choices made by DasGupta and Hurst. As they state in the very first essay of this collection, this book is "an invitation into the suffering body" (1). There is implied within this statement not merely the suffering body of the patient but the suffering body of the current medical system. This is remarkably exposed in the verse and prose of Cortney Davis who shows the power of the healthcare professional and the universal vulnerability of women in parallel pieces of a singular experience. From the elevated status of the caregiver, Davis quickly shifts to potential victim of society when a stranger begins following her late one night (205-214).

Many of the stories shared weave a more subtle form of connection. In "All Patients Are Political Women", Jasmina Tesanovic (*) writes about her experiences in a Serbian hospital but most Western readers will recognize the same vulnerability of powerlessness in the face of all-knowing doctors and the way community is built between patients. Later, Arthur Frank shares a different type of connection; His words read like a confession when he says, "I had cancer too long ago to read any of these stories with any ease. Today, it takes concerted effort to let myself be reminded" (72). The discomfort he feels as a result of this connection is haunting, a reminder that sometimes the medical professional has moments of helplessness in the face of a medical condition.

That the editors consciously chose not to explain the connections or suggest any at all that bears witness to the necessity of narrative medicine because the reader sees the interrelationship, regardless of the difference in the details. As they, themselves explain, it is "through storytelling, the patient can begin to heal and the listener, through witnessing, can facilitate in that healing (28). By allowing the stories to be told, without quantifying any particular relevance, the meaning of each story is allowed full voice.

Because the editors have wisely selected stories from a broad spectrum of experiences the suggestion that this change in how medical professionals will approach patients is obvious. How long it will take to see this change remains to be seen. But with increasing numbers of hospitals using integrative medical approaches, there seems to be a light on the horizon and this excellent text, one that can be read and appreciated by professionals as well as laypersons, is one that will shine bright throughout.

To read more about this book or buy a copy follow this link.

* Due to software limitations, certain symbols are not supported and this author's name is incorrect. The editor apologizes to the author, the editors of the book, and to you, our readers.

A Poem by Greg Brown

Horizon

In summer, when the days are still cool
when the dew still lives on the blade
of grass, I sing, bristling with
electrified hairs, stars which are noted,
somewhere, lost.

The feet keep the beat
and the breath the bass
for that is the sound
that the body makes.

We live in decay
not rotten or time
but Hades' lady
who has come home.

Of shadow's embraced
are all incomplete-
the use of white paint,
the light at your feet,

walk on the side
away from all motor cars
exhales a gas that
to our lungs, bring scars.

To read more from Greg Brown visit his poetry blog.

A Thought from Debbie McCullis

More and more health-care providers are practicing narrative-medicine-clinical practice informed by the theory and practice of critical reading, expressive writing, the telling and receiving of stories, and reflective capacity --and are strengthening provider-patient relationships in the process. Prose, poetry, graphic narrative, drama, photography and digital storytelling about medical training and practice are helping provide more humanized, more ethical and perhaps more effective care. Professional development in narrative practice is fostered through awareness, self-expression, construction of explanation and meaning, reflection, and understanding of experiences, roles, values, and knowledge.

Through personal illness narrative, patients have the opportunity to restore personhood. Patient disclosure has been shown to be therapeutic in the healing process. Writing in lay language can facilitate patients moving from catharsis to transformation, turning illness into story.

Debbie McCullis offers several online resources including workshops that support and encourage narrative medicine. For more about the work Debbie McCullis is doing and to sign up for one or more of her workshops visit her website.

Closing Thoughts from Satia Renée

Dear Readers,

In 2006 when I woke up with a condition that took six different doctors and I forget how many tests to determine what, precisely, was wrong with me. Over a year later, I had no cure but I had pages and pages of journaling and even the rough draft of a chapbook collection of poetry in which I poured out everything I experienced during that year with no answers. Anger. Fear. Frustration. Confusion. Grief. Despair.

I hadn't heard of narrative medicine but I knew, from my years of journaling, that when faced with a crisis the best way I can keep my sanity is to write through my emotions, especially when those emotions are flying at me from so many directions. From the expressive writing that filled my journal, I was able to take images and ideas, narrowing them down into verse. I didn't really think, at the time, that I was exploring narrative medicine. But I could see how what I was doing was helping me feel better, empowering my personal sense of well-being, even when the doctors were unable to find any answers for over a year and eventually gave me an answer that offered no hope for a cure.

I also know that my writing, my exploring my health on the page, made it easier for me to approach my doctors with more pragmatism. No, this didn't keep me from starting to cry when my otolaryngologist came back with test results that yet again offered no answer. It didn't stop me from being furious with my neurologist for not giving me a referral until after three requests and the third in the form of a certified letter.

Writing didn't keep me from feeling the spectrum of emotions that came with my experience but it allowed me to approach my healthcare with a modicum of control, of wisdom. I didn't have to try to remember how I felt from one day to the next because I had written it all down and could refer to my journal before a doctor's appointment as if I were cramming for a test I actually could pass.

I would love to see narrative medicine take deep roots within the medical community. I know that changes are on the horizon and that shifts such as these can take time. But the more I read about narrative medicine, the more excited I am and I was eager to share some insight into this movement. I hope that this month's newsletter has whet your appetite to explore further. Pick up a pen and write about your own body. Write in prose or verse. Rewrite the truth into a story. Write about taking care of someone else. Just give voice to your experience and add to the chorus of change.

Wishing You Wellness,
Satia Renée