Illness and Storytelling

Illness and Storytelling

By: Collaborative Medicine Journal, Starfish Health Partners

A few years ago, I attended a workshop entitled "Spirituality and Cancer" in San Francisco. Many of the people present were living with cancer and dealing with debilitating treatments. While I found the workshop presentation to be valuable, a participant insisted upon making strong suggestions to the rest of the attendees about what she felt was the "best" path to healing and cure, based upon her personal experience. Perhaps you have heard something similar to the following: "I have conquered my disease and you can, too, if you only (fill in the blank)." I know this person meant well and wanted to help. But she didn't.

Instead, tension began to fill the room. Some could barely contain their outrage. Why didn't they jump up and thank this woman who seemed to care so much about them? She surely believed her story was important, and perhaps it might have been. To help us, Arthur W. Frank, a professor of medical sociology at the University of Calgary, has given us a framework for understanding why this storyteller encountered such anger.

In his book The Wounded Storyteller: Body, Illness, and Ethics (1995), Frank talks about the value of "illness narratives," the stories people tell about their experience of illness. He writes, "Serious illness is a loss of the destination and map that had previously guided the ill person's life: ill people have to learn to think differently. They learn by hearing themselves tell their stories, absorbing others' reactions and experiencing their stories being shared." He reminds us that in many illness narratives, the story is told through the wounded body. In the telling of the story, a different sort of map, destination and compass can emerge.

Frank's illness narrative, At the Will of the Body (1991), chronicles his own encounter with testicular cancer, in which he tells us that illness is the experience of living through disease. He contrasts "disease talk" with "illness talk." "If disease talk measures the body, illness talk tells of the fear and frustration of being inside a body that is breaking down. Illness begins where medicine leaves off, where I recognize that what is happening to my body is not some set of measures. What happens to my body happens to my life".

So what about the "helpful" woman at the workshop?

Frank has defined three types of illness storytelling:

1. The first is the Restitution Narrative, or gee whiz-remarkable recovery stories that we often read about in the media (or hear from people in workshops!). What is important to understand is that, in this case, illness is seen as transitory. In terms of the story, "It is a response to an interruption, but the narrative itself is above interruption." It is all about the body returning to its former image of itself, before illness. The illness has been managed; the body likened to a car that has broken down and been repaired.
2. The second type is the Chaos narrative: chaos being the opposite of restitution. It imagines life never getting better. The person speaks without self-reflection and without narration. It is an anti-narrative.
3. The third type of narrative that Frank describes is the Quest narrative, as told through a body that can communicate an experience. "Quest stories meet suffering head on; they accept illness and seek to use it. Illness is the occasion of a journey that becomes a quest." Quest narratives talk about what it's like to be in pain, share a person's hopes and fears, his or her sense (or lack of sense) about the meaning of suffering and the possibility of death. Rather than telling others what they should do in order to return to their former state, quest narratives bear witness to the experience and share wisdom.

Frank does this when he writes to his "younger self," before illness. He tells him, "For all you lose, you have an opportunity to gain: closer relationships, more poignant appreciations, clarified values. Your are entitled to mourn what you can no longer be, but do not let this mourning obscure your sense of what you can become. You are embarking on a dangerous opportunity. Do not curse your fate; count your possibilities."

When I listen to people telling those gee-whiz restitution stories, I find myself feeling both happy that they are well and saddened for their missed opportunity. They have missed the opportunity to grow from within. They are separate from the group because they discount and devalue the Quest story. They have missed the opportunity to fully live an experience that comes with the territory of being alive.

First published through CancerLynx and dedicated to Alexandra.

References

# Arthur W. Frank The Wounded Storyteller: Body, Illness, and Ethics, University of Chicago Press 1995
# Arthur W. Frank At the Will of the Body: Reflections on Illness, Mariner Press, 1991

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