The Kingdom of the Sick

Narrative medicine helps caregivers and patients find meaning in illness

by Sayantani DasGupta, MD, MPH

Where does my illness begin and end when tracing the outline of who I am?
Beth Monkarsh MA ’13

Kingdom of the Sick

Caring for the sick and suffering requires caring for their stories. If stories are the way we human beings shape our worlds, the way we understand our identities and move through our lives, then they are doubly so in the face of illness or adversity. Stories build a bridge between our lives “before” and “after” illness, they create a map for us to follow when our old life’s plot no longer applies. Susan Sontag once wrote, “Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” If, then, our lives are an ocean voyage, a constant shuttling back and forth from the kingdom of the well to that other place, stories help us navigate those treacherous waters.

I stepped into the silent room where your body lay facing the window, your head tilted toward the night sky, the invisible mountain a dark presence in our minds. Last Sunday, you told me that you had seen land. You pointed out the dark silhouette of a remote continent, a headland looming over a distant and startlingly bright, emerald bay. You seemed relieved to be approaching landfall at the end of this long voyage.
Florence Johnson MA ’13

Stories have always been at the heart of health and healing. Before healers had fancy imaging equipment or lab tests in their metaphorical black bags, they had the ability to simply be present, to witness another human being’s life and death, suffering and joy. Narrative medicine, then, is the clinical and scholarly movement to find health care’s lost art of storytelling and story listening. No one is suggesting we get rid of medicine’s technical progresses, but rather, that we consider on equal footing the abilities to read an X-ray and “read” (elicit, interpret, and act upon) a patient’s story. A narrative understanding of health care honors the ancient, storied heart of healing, while teaching those responding to stories—clinicians, therapists, family members, and advocates—how to go about the art of witnessing.

But how does one train for listening? There seems to be a cultural myth that good listeners are simply born and not bred, that we can teach physiology or policy, anatomy or economics, but the skill set needed to engage thoughtfully with stories is ineffable. For more than a decade now, I have taught “Illness and Disability Narratives” in Sarah Lawrence’s graduate program in health advocacy, which celebrates its 40th anniversary this year. I teach the class from the firm conviction that listening can, and must, be taught.

In my “Illness and Disability Narratives” class, we watch films and documentaries, listen to oral histories, and read poetry, fiction, and nonfiction about individual embodied experiences from cancer to Deafness to multiple sclerosis. In these acts of witnessing we learn that individual stories are necessarily contextualized in families, communities, cultures, sociopolitics, and historical time periods. Although I was initially hired with the thought that a study of narratives would help future health advocates understand the experience of illness, I have come to see that teaching illness and disability narratives is not simply telling someone who has not had depression or post-polio syndrome what these experiences are “like.” (That logic would assume that having had a particular condition makes one an expert in relating to every other person with that condition.) Rather, listening to many heterogeneous illness and disability stories, and studying narrative scholarship, teaches us something far more invaluable: how to respond to stories in general.

When I was younger my family enjoyed carnivals and amusement parks. … With my father’s gradual decline into dementia and congestive heart failure … we are there again … [in] the scrambler ride. Sometimes now we are in the same car, laughing and having a good talk. … Sometimes we are in two different cars [but] we can still see each other occasionally … and even touch hands. … We stay there until the park closes, accepting the varying experiences we will have. … We can’t make this ride … stop.
Beth Abbott MA ’13

Yet, narrative medicine cannot simply be about “us” studying “them,” lest we re-create the unequal power dynamics, the “narrative colonization” of modernist medicine: a time when the doctor knew best and those suffering from illness or experiencing disability did not tell their own stories, but had their stories told to them by others. With this in mind, the students in my “Illness and Disability Narratives” class write their own embodied illness, disability, or caregiving stories. I consider the exercise a way for professional witnesses to identify their own cadre of personal stories and, in so doing, begin to understand their own frames of listening. Moreover, telling their own stories teaches students to witness themselves. Weekly writing prompts suggest students change the point of view, the genre (prose, poetry, visual collage), or other details of their personal stories, allowing them to explore how narratives work and why.

The final assignment of the class is an oral history interview of someone with a chronic illness, disability, or other embodied condition. Students transcribe their interviews and write analytical papers based on them, often gaining as much insight about their own processes of witnessing as about their interviewees’ stories.

… What are the parameters for exploring someone’s narrative? How might I stop myself from putting my own expectations of the story on what I heard? How do familial moments of witnessing differ from professional witnessing? ... Despite my genuine interest in my mother’s answers and the interview process in general … [in working through my transcript] I discovered … I had subverted the opportunity to delve more deeply into topics if they held significance on an emotional level … [which] compromised my willingness to be present with her fully.
Kirsten Pruzek MA ’13

Listening to illness and disability narratives is nothing less than listening for another’s humanity, and listening for our own capacities as witnesses to that humanity. Such witnessing requires great strength and great humility; it requires being deeply present for another’s life journey, and to be willing to share that journey for a while. Writing about traveling with her 23-year-old best friend, who was diagnosed with stage 3 breast cancer at age 20 and is still undergoing treatment for a recurrence, Sarah Aoanan ’10 MA ’13 observes:

“… The trips we’ve gone on are a kind of soul rejuvenation. There is always a meditative, prayerful aspect. Bora Bora is a worship place in Tahitian mythology, Lourdes is a holy place for Catholics, and the archaeological ruins in Belize are Mayan temples. Although we have never fully acknowledged our trips as having purpose, they are understood pilgrimages.”

Teaching too is a process of witnessing: witnessing the stories of my students and the stories that others share with them. Accompanying my Sarah Lawrence students’ journeys witnessing illness and disability stories is a sort of narrative pilgrimage, one in which I learn, and learn how much I have left to learn; one in which the teacher perpetually becomes the student.

Originally trained in pediatrics and public health, Sayantani DasGupta, MD, MPH, has taught in SLC’s Health Advocacy Program since 2001. She also teaches in the Master’s Program in Narrative Medicine at Columbia University. She is the co-author of a book of Bengali folk tales, the author of a memoir about race and gender in medical education, and the co-editor of an award-winning book of women’s illness narratives, Stories of Illness and Healing: Women Write Their Bodies.