From the Literature, Arts and Medicine Blog:
by Sayantani DasGupta, M.D., M.P.H., Assistant Clinical Professor of Pediatrics and Core Faculty, Program in Narrative Medicine, Columbia University; and Faculty, Graduate Program in Health Advocacy at Sarah Lawrence College
The mystery of illness stories is their expression of the body: in the silences between words, the tissues speak. It’s about hearing the body in the person’s speech. — Arthur Frank(1)
Hearing the Body
A woman with a history of thyroid cancer is giving a life history interview to a student as part of a graduate seminar assignment. Her narrative shows how complex and interworven the pieces of an individual’s story are to one another. “My parents never felt strong enough to share with me that I was adopted,” she reveals, “but deep down I had an inkling that was the case…I recall my mother, who had a separate walk-in closet from my father…saying to me many times over, ‘You’re welcome to try on my clothes…but never touch the strong box that’s on the shelf because it contains important papers related to our house.’” At age 12, she finally opens the box, discovering the truth of not only her parentage – in the form of letters between her adoptive and biologic parents – but the key to her genetic health risks. When, years later, after having a child herself, she decides to contact her biologic mother, she discovers that her mother is terminally ill with ovarian cancer – 20 years after having had breast cancer as well – and that she herself is genetically predisposed to both diseases. (2)
Another student interviews her elderly father, a brittle diabetic who is slowly losing his ability for independent living. She compares him to Jean-Dominique Bauby, the completely paralyzed author of The Diving Bell and the Butterfly(3), describing her father’s condition as “The locked in syndrome of the aged.” She both celebrates her connection to him and mourns his losses – present and future. “Sustained by memories, reflections and dreams and the adventures of the wanderings of the mind,” she writes, “time will be fleeting and yet it will be all that he has…I know there is ‘no currency strong enough to buy his freedom back from the kingdom of the sick.’”(4)
A young woman interviews her cousin, a man with a life threatening peanut allergy. She admits to her instructor that she picked her cousin for his sense of humor – “I didn’t want my illness interview to be depressing.” Yet, although she has known about her cousin’s illness her entire life, the interview process inspires her to advocate for the safety of those with food allergies. Using Arthur Frank’s precept of living for others and ‘placing oneself within the community of pain,’(5) she writes, “What Frank is advocating, I believe, is empathy – a quality that shouldn’t just translate into feeling but also action…I hope to carry on (my subject’s) message, combining both our voices into one, action oriented campaign.(6)
For the past seven years, I have taught a class on illness narratives at the graduate program in Health Advocacy at Sarah Lawrence College, a class in which students read autobiographical as well as scholarly writing about illness. The idea of teaching listening through the close reading of narratives is one that is consistent with my work at the Program in Narrative Medicine at Columbia University, where my colleagues and I teach medical students, residents, fellows, and practicing clinicians the skills of medical listening through the close reading of texts, as well as the writing and sharing of the students’ own texts.
However, the final assignment for my illness narratives class deviates from this tradition in medical humanities to use either literary or cinematic narratives in our teaching. Rather, I turn to the discipline of oral history to assign the students the task of conducting, transcribing and analyzing an oral history life story interview of a subject with a chronic illness. Before describing some more details about this exercise, it is useful to describe some ways oral history theory can illuminate our understanding of medical listening.
Read more here