The Wounded Storyteller by Arthur Frank

I want to share with you this Preface by Arthur Franks to his book The Wounded Storyteller:
I wrote the outline of The Wounded Storyteller in early spring 1994, while I still had stitches from the biopsy that determined I was not having a recurrence of cancer… Writing The Wounded Storyteller was as much a work of self-healing as of scholarship. I needed to gather around me voices that shared what I had been through during the previous years of illness. I had written about my own experiences  in a memoir, At the Will of the Body, but I needed the insights and articulations of other ill people to assure myself I wasn’t crazy. I needed others’ thoughts in order to become fully aware of my own. That is the book’s consistent message about why suffering needs stories: to tell one’s own story, a person needs others’ stories. We were all, I realized, wounded storytellers.  The wounded storyteller is anyone who has suffered and lived to tell the tale. Suffering does not magically disappear when the tale is told, but the more stories I heard the less space my own suffering seemed to take up. I felt less alone. This book was my attempt to widen the circle, to amplify and connect the voices that were telling tales about illness, so that all of us could feel less alone. The wounded storyteller is a guide and a companion, a truth teller and a trickster. She or he  is a fragile human body and a witness to what endures.  People need a guidebook for the day when  they become wounded storytellers, because most people find themselves unprepared. I certainly needed such a book, despite having spent much       of my professional life [as a sociologist] studying health care. The Wounded Storyteller was my attempt to provide that guidebook.” What surprises me rereading the book is how little my ideas about bodies, illness, and ethics have changed. Since I wrote this book I have read new memoirs of illness and interviewed ill people, but as generous as those people were about their experiences, the voices here are the ones that continue to resonate in my thinking, defining illness for me. The voices that speak to us at particular moments in our lives, especially during transitions or crises, imprint themselves with a force that later voices never quite displace. Returning to the The Wounded Storyteller,        [20 years later] I realize how deeply I loved the voices of those whose stories I retell, both people         I actually knew and writers whom I came to feel I knew… This book was written at two particular moments. In my life, I was at the end of a decade when it seemed all my conversations ended up being about illness, and most started that way.           The book was also written at a particular public moment when ill people were claiming the right to tell their own stories, but that right had yet to be attained. Today, illness stories proliferate, especially on the Internet and in mass media, but when I was gathering the materials for this book, speaking publicly of illness felt new and necessary. …[W]hen I joined a cancer support group sponsored by a national organization, we were not allowed to post fliers in the local cancer center, to tell patients where and when meetings were being held. My sense of what was deeply wrong was affirmed when I read Audre Lorde, who wrote as a breast-cancer survivor around 1980, “My silence had not protected me, your silence will not protect you.” That quotation is one of the lines that resounds loudest when I think about illness.                                  My questions are always: who is preserving what silences, what do they imagine is being protected by silence, and who suffers by being kept silent?” Lorde shows a way out of silence: speech that has the power to create community. “But for every real word spoken, for every attempt I had ever made to speak those truths for which I am still seeking, I had made contact with other women while we examined the words to fit a world in which we all believed, bridging our differences.” The Wounded Storyteller was written to expand that contact between people who had stories to tell of illness.          I sought to examine the words in which people attempted to speak the truth about illness, words in which they tried to “fit a world” that seemed worth believing in. This book is not a memoir, as deeply rooted in my own experience as it is. I wrote it with a sociologist’s core conviction that people’s sense of their own originality is highly overrated.  This book reflects a tension between two recognitions of human life that sound paradoxical but are actually complementary. First, people’s experiences are intensely personal; claims to the uniqueness of experience are true and deserve to be honored. Second, people’s ability to have experiences depends on shared cultural resources that provide words, meanings, and the boundaries that segment the flow of time into episodes. Experiences are very much our own, but we don’t make up these experiences by ourselves.  People tell their own stories about illness, but what seems worth telling, how to format the story, and how others make sense of the story all depend on shared ways of narrating illness. The core chapters of The Wounded Storyteller describe three narratives that storytellers and listeners use to structure and interpret stories, respectively: restitution, chaos, and quest. Each is also a way of experiencing illness.                                   Restitution represents my life as a patient. Health-care workers expected any experience to be interpreted within a narrative of movement toward recovery of health. Whatever happened to me could be understood only as a necessary step toward that achievable goal of health. I wanted to get well and appreciated reassurance that I would. But I also needed recognition of my suffering at that particular moment, as well as recognition that my recovery was by no means assured. I increasingly resisted the restitution narrative, especially how it positioned the physician as the protagonist and relegated me to being the object of that protagonist’s heroism. I was certainly part of this story, but it could never truly be my story. The restitution narrative had no space for the chaos part of my illnesses: the months when my rapidly progressing testicular cancer was misdiagnosed, first as a sports injury—muscle strain—and then as an unknown disease, probably, but not certainly, cancer.  Chaos was in the disconnection between the increasing pain that was sending my life off the rails and my physicians’ frustrated insistence that nothing serious was wrong. Chaos was in the claustrophobia of confronting others’ inability               to see what I so clearly felt. Many people with chronic illness, especially multiple sclerosis, have written about this diagnostic uncertainty and the relief when some physician validates how much is actually wrong, as devastating as that diagnostic news can be.  My own chaos was bad enough, but I never experienced the chaos in which many people feel trapped, when each misfortune seems to trigger some other collapse: disease leads to job loss, which creates a housing crisis, and then some other family member gets sick. However, I went through enough to recognize that desperation and the silence that chaos imposes. Those living in chaos are least able to tell a story, because they lack any sense of a viable future. Life is reduced to a series of present-tense assaults. If a narrative involves temporal progression, chaos is anti-narrative.  My period of chemotherapy was bordering on chaos when my understanding of what I was going through began to shift. A sequence of experiences brought me out of an obsession with my own pain and vulnerability and gave me a sense that I was participating in something shared. Time spent being ill ceased to be time taken away from my life. Instead, how I lived with illness became the measure of how well I could craft a life, whether I was ill or healthy. This attitude is the basis of understanding one’s story as a quest narrative. Illness remains a nightmare in many ways, but it also becomes a possibility, especially for a more intimate level of connection with others.  Illness as quest is described by Anatole Broyard’s posthumous collection of writings, Intoxicated by My Illness, which became available late in my work on The Wounded Storyteller. Broyard, a writer of some fiction and much literary criticism, presents living with rapidly progressing prostate cancer as a problem of style: “It seems to me that every seriously ill person needs to develop a style for his illness.” I understand telling stories as an especially important medium through which we discover what that style might be. Storytelling is less a work of reporting and more a process of discovery.  Broyard then writes the sentence that, in retrospect, defines not only the quest narrative but the core issue of The Wounded Storyteller: “It may not be dying we fear so much, but the diminished self.” He thus expresses what remains my crucial question: “If I become ill again, or when I do, how will I find ways to avoid feeling that my life is diminished by illness and eventually by dying?  Broyard was clear that physicians are often a               part of the problem of diminished lives.“Doctors discourage our stories,” he writes. I did not include that dig at doctors in The Wounded Storyteller, and I am surprised, rereading today, how disciplined I was in depicting health-care professionals only from the perspective of patients and minimizing even that. My intent was to write a book that kept health-care workers generally, and physicians specifically, in the background. Even criticizing doctors makes them central. …[T]aking the professional perspective undoes what The Wounded Storyteller is most concerned to bring about: a view from the ill person’s perspective, in which the central problem is how to avoid living a life that is diminished, whether by the disease itself or by others’ responses to it. The professionals in health care and other fields who have communicated with me about The Wounded Storyteller all realize that providing treatment should not be equated to offering care, however that distinction is expressed in the respective idioms of different professions. Other readers are working to make sense of their own suffering, struggling to find words and narratives that share their experiences with others.  What I appreciate most is when the boundaries between these two types of readers blur. Professionals bring their personal suffering into their work, and ill people discover forms of vocation in illness. The wounded storyteller, ending silences, speaking truths, creating communities, becomes the wounded healer.”  —Calgary, Alberta. Arthur W. Frank

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