In 1989 I was trying to put life back together after my wife and I had gone through three years of what I now call deep illness, that is, illness that you believe will change forever who you are and how you understand the world you live in. I had a virally induced heart attack in 1985, then was diagnosed with cancer in 1986, and my mother-in-law, Laura Foote, died of cancer in 1988. My response was to put these events into a story, which became my first book, At the Will of the Body, published in 1991 and reissued in a new edition in 2002. I mean seriously my phrase "put these events into a story." The story became a kind of container for the events; it held them in memory, but also gave my life some distance from illness.
Curiosity about issues of how illness can be narrated led me to study other people's illness narratives and eventually to writing The Wounded Storyteller, published in 1995. My most recent book, The Renewal of Generosity (2004), expands the scope of concern further, using stories of not only ill people, but now including physicians' and nurses' stories to imagine a more generous health care and beyond that, a more generous way of living lives that include suffering. Writing these three books has been both an adventure of thought and an experience of personal healing, and that healing continues.
What have I learned so far, that might be useful to other people?
1) Distinguish what medicine calls cure from what you need to experience as healing. Medicine, fortunately for me, was able to cure me. But medicine did nothing to heal me from the multiple dislocations of illness. Physicians and nurses, in most places, most of the time, see themselves as under siege: set upon by more social ills than they have personal or institutional resources to address. So—and a complex story lies behind that little "so"—they practice their work within barriers, more or less strictly limiting their sense of who they can be in relation to their patients. I won't debate that strategy here, or ask which barriers are self-imposed and which are institutionally erected, though these are crucial questions for any health care provider to ask him or herself. My point is that deep illness disrupts life in all its facets—in sense of self, in personal relationships, and in how a person feels related to the cosmos, whether that means God, fate, or the quantum universe. Healing requires finding a new balance, a new sense of who you are in relation to the forces and people around you. Healing requires telling a new story about your life.
2) Telling this new story requires a sense of connection between your personal story and stories that reach beyond you. I'm not terribly fond of epiphanies—moments presented as bringing sudden insight—when these occur in personal narratives. As a storytelling device, epiphanies are too easy in their drama and often too simple in their message. But epiphanies do happen. While I had cancer, one afternoon I was sitting in our living room, dazed by chemotherapy, looking at nothing in particular. Then I suddenly saw something, in the sense that seeing can be a physical connection. I saw a print that had been on my wall for years, showing the biblical scene of Jacob being blessed by the angel with whom he has wrestled all night. Since then, "Wrestling with the angel" has been the title of at least books about illness. There was nothing original in my making this connection between Jacob's story and mine. But originality isn't the point; what counts is to feel that connection as one's own. Suddenly my suffering was more than my own personal misery. In the connection to Jacob, what was happening to me became diffused in time and generalized in significance. The story gained some small increment of resonance, and I gained a great deal in dignity. Healing may begin in feeling part of something larger than yourself.
3) Healing requires telling a story that tells the truth. Most ill people learn, pretty soon, that society does not want to hear the truth about illness. We build "care facilities" to keep the ill sequestered, out of view. Newspaper stories feature medical breakthroughs and "gee whiz" technologies, not stories of everyday loss and sadness. When people are dying in newspaper stories, they are doing so with some special measure of heroism. Medicine treats disease more than it cares for the ill. Treatment is delivered; caring requires being with another, as two persons together. At worst, most people who have lived in deep illness have multiple experiences of violence against themselves: the indifference of employers, the abandonment by friends, the embarrassment of family, and—far too often—the blame by medical staff when their work goes wrong. These injuries—real and imagined—need a story to put them out there, in public view, because as long as they remain within our own imaginations, they fester and eventually poison. Plus, we owe it to others, to show them that their injuries, while deeply personal, are not theirs alone.
4) We need to tell stories in order to learn to tell better stories, because only through better stories will we all be healed, together. We each tell our own stories, but no story is one person's alone—that paradox is crucial to the sense of connection to larger stories that was my first point. The sociologist in me recognizes that whenever anyone tells a story, we draw on modes of narration—constructing plots, setting scenes, establishing points of view, building suspense—that we have learned from other stories. Maybe most importantly, we draw on sources of value that we have learned from other stories, and we call on those who hear our stories to accept those sources of value. Stories are much more than telling the news to those who weren't there to see it happen. Stories relate teller and listeners in evaluations of what happened. As we tell each other stories, we share our affirmations as well as our indignations.
In my recent writing, I hold up generosity as a source and standard of value, and I collect stories that uphold different ways of being generous. I do not mean material generosity, though charity is always nice. I mean generosity in how a person understands and acts on the connection between another's life and his or her own. Generosity begins by treating other people as if we are connected, because I believe we are. That's pretty much the Golden Rule of doing to others as you would have them do to you, and if health care applied only that wisdom to health care, that would improve everyone's life—patients and providers both. But generosity involves more.
The reciprocal part of generosity is recognizing the equally important non-connection between others and ourselves: seeing how others may not want to be treated as we ourselves would want, and creating a space for their values and desires. The generosity I imagine always takes place on a boundary or border between what is too close and what is too distant, and that boundary shifts as relationships change. Generosity begins in the willingness to ask constantly: Where does this other person need me today, in what relation of proximity or distance? That question seems a beginning of generosity.
Generosity is learned through stories that depict other people being generous, and stories remain central to how generosity is practiced. Some practices of generosity involve listening to other people's stories; as I called it in The Wounded Storyteller, being a witness to their stories. Other practices of generosity involve acting toward others—being a character in other people's stories—in ways that give them good stories to tell. We humans both tell stories of actions past, and we enact stories waiting to be told. In both moments, we seek stories that perpetuate what we find valuable.
In conclusion, illness is terrible but, with some luck, it can also be full of wonders. The terrors assault us at once; the wonders take longer to become visible. Stories help us gain some distance from the terrors and learn to perceive the wonders, but storytelling is a skill, and like all skills, it takes practice to be most effective. Stories offer witness to all that is badly wrong and needs to be changed, and stories offer imaginations of a more generous life that can be. In telling all kinds of stories, we find healing.