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.