Commentary by Patricia Stanley, M.B.A., M.A., Guest Faculty, Program in Narrative Medicine, Columbia University’s College of Physicians and Surgeons; Clinical Coordinator, Masters in Narrative Medicine
There is a short story, “The Shawl”, by Louise Erdrich, which is about story and memory and the reworking of old stories into new ones to effect healing. (1) A story of a child being thrown to the wolves is transformed generations later into the child’s heroic leap to save a family, the tribe, the pride of the reservation. This story has particular meaning for me since I too have transformed a tragic story from a past time of much suffering into a reason to heal and to bring healing to others through my work as a health advocate. As Arthur Frank writes in The Wounded Storyteller (pp. 23-24):To think with a story is to experience it affecting one’s own life and to find in the effect a certain truth of one’s own life . . . Being responsible to these stories, thinking with them, depends on telling certain stories over and over, hearing different nuances of potential meaning as the story is told in different circumstances and at different ages of our lives.
After my husband’s death from a ten year battle with cancer, I was beset by loss, the loss of my husband, the loss of my old life. I needed a new purpose. I also was haunted by images of patients, alone and isolated as they tried to navigate the medical maze of specialists, community hospitals and urban teaching medical centers, insurance regulations, clinical trials, endless interventions and medical decision making. Towards the end of that decade, a small seed for a new beginning was planted after a doctor remarked: “You know, you should consider becoming a patient advocate.” And so in January, 2002, I enrolled in the Masters in Health Advocacy Program at Sarah Lawrence College under the expert guidance of Marsha Hurst and began my transformation from a Westchester widow to an agent for change. That summer, I took Sayantani DasGupta’s popular course: “Illness Narratives: Understanding the Experience of Illness.” There I found my niche in the new literary genre related to memoir and autobiography called illness narratives or pathography.
As part of the grieving process and finding meaning in my new life and in need of developing skills to help others as an advocate, I developed an insatiable thirst for these stories of suffering. They became a way for me to connect to the embodied suffering that I had recently experienced with my husband. In this class I witnessed the healing that develops from the process of writing in which patients discover their story of survival, move it from talk to the visible page, where they can recover, revise and thereby control the meaning of what has happened to them. I experienced how writing and sharing a story enables a person to feel the connection with stories that reach beyond one’s own personal story, a connection to something larger than oneself. Witnessing these stories enabled me to understand the many variations on suffering and to respect the connections and the differences that each story evoked. Most importantly, I felt that I was not alone with my experience but that I was part of a community.
A Door Opens
I was hooked. Because Sayantani included a fair amount of narrative theory in the syllabus, I became acquainted with and actually quite dazzled by the writings of Rita Charon. I asked Sayantani for an introduction to the veritable source of “narrative medicine,” not once but at least twice to see if I could become an intern. I also repeated Sayantani’s course in the fall to take advantage of a more complete syllabus than was given in the intensive six week summer course and an additional oral history project. That winter and spring, I helped a Sarah Lawrence economics professor teach Economics 101 to inmates attending the college at the Bedford women’s correctional facility. That experience fueled my interest in stories, how they are ever so singular while still so clearly part of the common human fabric.
Fortunately the next summer Rita Charon had been awarded an NEH grant to develop a curriculum to train health care providers with narrative competence. I met her and she took me on as an intern to assist in the coordination of that grant and to help in whatever way possible with the seemingly endless list of projects in which she was involved. I have never left.
The oral history project that Sayantani DasGupta assigned in that fall course began another interest and passion for interviewing and recording the stories of others, primarily those involved in some way with illness. I did a capstone project for my Masters which was to conduct oral histories of patients from the Dickstein Cancer Center. I interviewed, recorded, transcribed and wrote their interviews and gave each patient both the oral and written narratives for their own use. I was astounded by how eagerly they talked to me, sharing hours of memories, reflecting on the meaning of illness in their lives. This oral history thread has continued to be a significant part of my narrative work.
Field Work in Narrative Medicine
I have been immersed in narrative medicine since the summer of 2003. As part of Rita’s NEH project, I became a member of the faculty that facilitates the annual workshops conducted by the Program in Narrative Medicine to train outside healthcare providers and others in the art of narrative competence. I have also been part of the planning process for the Masters in Narrative Medicine which begins this fall at Columbia. Based upon my fieldwork that I will describe in the next few paragraphs, my ongoing role for the Masters will be to supervise clinical internships for the students.
After I graduated from Sarah Lawrence with a Masters in Health Advocacy, Rita offered me an opportunity for my own workshop with patients. I had had a previous opportunity one summer to co-facilitate with Rita a narrative intervention with the doctors, nurses and social workers on the pediatric oncology floor at Morgan Stanley Children’s Hospital (CHONY). I also had sat in on narrative rounds, a thriving biweekly group of clinicians, nurses and social workers from the oncology floor at NY-Presbyterian Hospital who wrote together about their clinical experiences and read to one another what they had written. From this experience came the idea to add the patient’s voice. Rita offered me the chance to begin a narrative writing workshop that combined oncology outpatients with family caregivers and clinicians. One oncology doctor had funding from the patient foundation, Team Continuum, and an oncology social worker was eager to co-facilitate. We put up flyers and sent out the call for participants.
As a result, one Tuesday evening in September 2006, thirteen courageous people arrived on the sixth floor of Milstein Hospital in search of something called a narrative writing workshop. That first year the group was composed of all women: one oncologist, two nurses, two caregivers and seven patients. We read together Rita’s book, Narrative Medicine and excerpts from illness narratives. We wrote at each monthly meeting and shared our writing, and we became a community. Let me quote from one of the members:Do not be deceived, this is no ordinary group…There is no doubt they lost a lot, almost everything, but they found the strength to come together to talk, to write, to read, to trust again, and to continue living.
With the ongoing financial support of Team Continuum, we planned the second year, invited some guest speakers and ventured forth to see a movie together, The Diving Bell and the Butterfly.
Now at the end of our third year, our workshop has 19 members and a waiting list. We are a diverse group including patients who are in remission and patients who are in active treatment, patients who are living with chronic illness and those who are just now experiencing the pain, fear and loss of control owing to a new diagnosis or a recurrence. We have doctors, nurses and social workers; we have members who fit into several categories simultaneously: clinician, patient, bereaved persons. And we have men and women.
We have read together a wide range of work from Joan Didion to Marcel Proust; explored visual art from master paintings to comics; shared our favorite songs; and every session we write together all in the service of using art to inspire creative exploration of the experience with chronic illness and loss.
We have expanded the program to include some daytime events that gather additional patients, caregivers and clinicians around a table making books, writing poetry, combining text and art through collage. We have put poems in the waiting rooms on the oncology floors for patients and families to enjoy and take home.
We have expanded our team of facilitators to include an artist, a poet and a writing coach who have in turn inspired members of the narrative writing workshop to put together a book, Inspiration, an anthology of poetry and prose, photography and collage. In June, we held a reading event at the hospital during which members read from the book to an audience of 100+ doctors, patients, family members, friends, and colleagues. Copies (1000) of the anthology have been dispersed far and wide to other hospitals, clinicians, families and patients. This workshop is fully funded for the coming year and the members are eagerly working on another book.
Fieldwork: Oral History, a Narrative Application
My interest in oral history has been a constant thread in the fabric of my narrative work. I am in the process of conducting a series of oral history interviews with the past president(a reign of 40 years) of Blythedale Children’s Hospital in Valhalla, NY. He transformed Blythedale from a small convalescent home into the highly regarded independent children’s rehabilitative hospital that it is today. The oral history thread also led me to initiate the weaving of a video story project into the curriculum at the Mt. Pleasant Blythedale School. The students at this Special Acts District School are all patients of Blythedale Hospital. This project is based on the StoryCorps model and in fact the school has become a community member with StoryCorps. Parents and children have recorded interviews in the StoryCorps booth at Grand Central Station and at the school. An oral history expert from Columbia University’s oral history department has trained the teachers on the use of oral history in a secondary school curriculum. We have built a video story studio and have received a grant from Pace University to purchase professional video equipment, computer and editing software. The project has become a multi-pronged initiative incorporating the idea of story, listening, interviewing and writing throughout the curriculum giving the students the skills and opportunity to advocate for themselves, to give voice to their feelings and to utilize narrative competence for any number of creative and useful projects.
In “The Shawl,” the narrator at the end of that saga of suffering says:Now, gradually, that term of despair has lifted somewhat and yielded up its survivors. But we still have sorrows that are passed to us from early generations, sorrows to handle in addition to our own, and cruelties lodged where we cannot forget them. We have need to forget. We are always walking on oblivion’s edge. (1)
My experience with narrative medicine and with the video story project at Blythedale has become my new story, one of survival from a tragic experience of personal loss. The sorrow is still there but something so strong and affirming as this work in narrative medicine has given me a healthy distance from oblivion’s edge. For that I am most grateful.
NOTE: I found the metaphor for the title of this commentary in Sherry Reiter’s new book: Writing Away the Demons: Stories of Creative Coping through Transformative Writing (St. Cloud: North Star Press, 2009) p.257.
Reference 1. Erdrich, Louise, “The Shawl”. Literary Cavalcade, May 2002 54 (8): p.23.