- Email: [email protected]
Essay: Writing and healing
Essay Writing and healing Anne Hudson Jones “All sorrows can be borne if you put them into a story or tell a story about them.” Isak Dinesen
The famous opening sentence of Leo Tolstoy’s novel Anna Karenina, “All happy families are alike; every unhappy family is unhappy in its own way”, implies that unhappiness is more artistically interesting than happiness. Tolstoy’s assertion, although arguable, conveys a profound human truth. Unhappiness and suffering do seem to stimulate creativity and have evoked some of the greatest literature, art, and music in western culture—works such as Dylan Thomas’s “Do Not Go Gentle Into That Good Night”, Picasso’s Guernica, Shostakovich’s symphony 13 (Babi Yar), and, more recently, John Adams’s On the Transmigration of Souls. Similarly, it is more often illness than health that compels people to find creative ways to express their experiences. Indeed, the German writer Thomas Mann believed there was a special affinity between susceptibility to an illness like tuberculosis and heightened artistic sensitivity; he explored this affinity in his stories and novels—“Tristan”, “Tonio Kröger”, Buddenbrooks, and The Magic Mountain, for example. Ironically, Mann himself was healthy enough to live to the age of 80. Not only great artists, however, have been inspired by illness. In recent decades, especially in the USA, illnessinspired writing has resulted in hundreds of autobiographical accounts of patients’ experiences with illnesses from AIDS, Alzheimer’s disease, autism, bipolar disorder, bulimia, cancer, through heart disease and lupus, to schizophrenia and stroke. A subgenre of autobiography, these accounts have spawned a critical and theoretical discourse of their own. In her book Reconstructing Illness: Studies in Pathography, Anne Hunsaker Hawkins offers a taxonomy of such works, classifying them according to the prevailing myths, whether archetypal or ideological, that authors use to confront or accept their illnesses. Not surprisingly, she finds that most people choose the archetypal myths of battle, journey, and death and rebirth in writing their pathographies. In narrative reconstructions of their illnesses, these patients seek to answer the questions of why they became ill, what their illnesses mean in the context of their lives, and how they can reshape their lives to accommodate the significant changes that illness brings. From her reading of hundreds of pathographies, Hawkins believes that writing their illness stories is the final stage in healing for many of the authors. That writing about physical disease or psychic trauma offers a powerful means of healing may seem selfevident not only to people who regularly read www.thelancet.com Medicine and Creativity Vol 368 December 2006
Lancet 2006; 368: S3–S4
pathographies but also to those who use writing as a therapeutic intervention with patients and trauma victims. Yet finding a way to demonstrate the healing effects of such writing to a sceptical biomedical audience has presented quite a challenge. Things changed substantially in 1999, however, with the publication of a JAMA article by Joseph M Smyth and colleagues, who had completed a randomised controlled trial of different writing interventions for patients with chronic illnesses— asthma or rheumatoid arthritis. The researchers concluded that writing about stressful life experiences, as opposed to writing about “emotionally neutral topics”, did indeed improve patients’ health, as measured with standard clinical tests and assessments. Although the research design and results were immediately called into question by sceptics, the article’s greatest contribution was the impetus it gave other researchers to investigate and report on similar writing interventions. Finding measurable outcomes that can demonstrate the beneficial effects of patients’ writing about their illnesses is essential if this low-cost, low-risk therapy is going to be made readily available to more patients and their families. We will need many more practitioners trained to follow the paths of trailblazers such as James Pennebaker, Marian MacCurdy, Charles Anderson, and Gillie Bolton. In The Wounded Storyteller: Body, Illness, and Ethics, published in 1995, just a few years after his account of his own illness experiences, the sociologist Arthur W Frank ups the ante. In his theory of postmodern illness and medicine, patients’ first-person narratives of illness are essential for those who cannot quickly be restored to the degree of health they enjoyed before illness struck. Of the three narrative types Frank thinks are available to patients—restitution, chaos, and quest—only in the quest narrative can the distinctive voices of the ill be expressed and heard. The quest narrative requires patients to accept illness as a journey that can lead to new insight, meaning, and purpose for their lives. Epiphany and transformation are the paradoxical gifts of illness, the boon conferred by the quest. Frank believes that it is incumbent on those who have returned from their illness quest to tell their stories, not only for themselves but also to others. He calls for these wounded storytellers to share their wisdom with people who are still well and may not want to hear. Correspondingly, he argues that there is an ethical obligation for the healthy to listen to the stories of the ill and thereby witness the human suffering they have endured. Telling and listening to such stories are moral acts that we owe each other as fellow human beings. Presumably Frank intends for the ill to offer their insights and wisdom so that others can learn from them and heal their lives without
The printed journal includes an image merely for illustration
Anne Hudson Jones is the Hobby Family Professor in the Medical Humanities and Graduate Program Director at the Institute for the Medical Humanities of the University of Texas Medical Branch in Galveston, where she has taught since 1979. A pioneer in developing literature and medicine as a subspecialty of the medical humanities, she was also a founding editor of the journal Literature and Medicine, which she served as editor-in-chief for more than a decade. She has a special interest in the therapeutic use of writing and in patients’ narratives of illness, especially narratives of mental illness. Institute for the Medical Humanities, University of Texas Medical Branch, 301 University Boulevard, Galveston, TX 77555–1311, USA (Prof A Hudson Jones PhD) Correspondence to: Prof Anne Hudson Jones [email protected]
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Succession Picasso/DACS, London 2006/AKG-Images
The printed journal includes an image merely for illustration
Picasso, Guernica
Further reading Anderson CM, MacCurdy MM, eds. Writing and healing: towards an informed practice. Urbana, IL, USA: National Council of Teachers of English Press, 2000. Bolton G. The therapeutic potential of creative writing: writing myself. London: Jessica Kingsley Publishers, 1999. Literature and Medicine: Writing and Healing 2000; 19: 1–135. Pennebaker JW. Opening up: the healing power of expressing emotions. New York: Guilford Press, 1997. Smyth JM, Stone AA, Hurewitz A, Kaell A. Effects of writing about stressful experiences on symptom reduction in patients with asthma or rheumatoid arthritis. JAMA 1999; 281: 1304–09.
S4
having to undergo the pain and suffering of illness personally. Yet even if all patients were able to tell their stories of illness and find healing through their telling, not all such stories would be told skilfully enough to convey wisdom and healing to others. In fact, only a few patients’ narratives, crafted with skill and touched by grace, can bridge the huge chasm between the worlds of illness and health. One narrative that has such power is JeanDominique Bauby’s The Diving Bell and the Butterfly. At the age of 43, Bauby was in his prime as the successful editor of the French fashion magazine Elle when he was suddenly struck down by a massive brainstem stroke on Dec 8, 1995. Three weeks later, as he began gradually to regain consciousness, it became apparent that he was suffering from locked-in syndrome: his remarkable mind was trapped in a body that was almost completely paralysed. He could move only his left eyelid. Such a nightmarish prospect is so horrifying that, in a primitive form of self-protective denial, most of us would prefer to believe that patients such as Bauby are not conscious of their fate. Reading his beautifully crafted book quickly strips away any such fantasy and makes it impossible to disregard either his profound suffering or his extraordinary achievement and gift. He composed, edited, and memorised the essays during his long nights alone and then “dictated” them, letter by letter, eyeblink by eyeblink, as the letters of the French alphabet were recited to him over and over again by Claude Mendibil, an editorial assistant sent by his publisher. The feat of composition is itself dazzling, but that is only the beginning of what Bauby has to offer. Although anchored in his bed by the heavy diving bell of his body, he allows his mind to fly free, like a butterfly, as he revels in the rich sensuous details of his memories and his imagination. Fed by a stomach tube, he remembers preparing delicious meals of snails, Alsatian sausage,
boeuf bourguignon, wine, apricot pie, melon, and red fruit, and savours in his imagination their vivid aromas and tastes. One week he flies to Hong Kong early each morning. Even though he has never actually been in Hong Kong, he knows that his photo is incorporated into the décor of a chair at the Felix Bar in the Peninsula Hotel there, and he enjoys the rather salacious thought of charming young Chinese women in miniskirts sitting on him. Some days he is able to enjoy being tended physically like a baby, having his bottom wiped; other days the experience brings him to tears. From all these accounts, readers can’t help but realise how lucky they are if they are still able to engage in the simple pleasures: bathing and dressing themselves, eating good food, drinking good wine, talking with each other, holding and physically touching others. Although his plight is horrific, Bauby triumphs just as surely as does Albert Camus’s absurd hero Sisyphus, who was condemned by the gods to the futile labour of pushing a huge boulder up a mountain time and time again, only to have to watch it roll back down each time. Like Sisyphus, Bauby transcends his fate because of the lucidity and joy with which he embraces his life even in the face of profound limitations and suffering. Despite his locked-in condition, he lives fully and passionately, bringing all his powerful intelligence, imagination, and will to bear on the moment before him. This is the gift that he offers his children, his friends, and his readers. Having witnessed his suffering, we all would do well to accept his gift of joy and try to live fully wherever we find ourselves, whether in illness or in health. Reflective writing can help both patients and clinicians in our mutual quest for healing, our desire for health and life in face of the inevitability of illness and death—what Camus calls the absurd and Milan Kundera calls the unbearable lightness of being. In the end, as in the beginning, is the word. www.thelancet.com Medicine and Creativity Vol 368 December 2006
The famous opening sentence of Leo Tolstoy’s novel Anna Karenina, “All happy families are alike; every unhappy family is unhappy in its own way”, implies that unhappiness is more artistically interesting than happiness. Tolstoy’s assertion, although arguable, conveys a profound human truth. Unhappiness and suffering do seem to stimulate creativity and have evoked some of the greatest literature, art, and music in western culture—works such as Dylan Thomas’s “Do Not Go Gentle Into That Good Night”, Picasso’s Guernica, Shostakovich’s symphony 13 (Babi Yar), and, more recently, John Adams’s On the Transmigration of Souls. Similarly, it is more often illness than health that compels people to find creative ways to express their experiences. Indeed, the German writer Thomas Mann believed there was a special affinity between susceptibility to an illness like tuberculosis and heightened artistic sensitivity; he explored this affinity in his stories and novels—“Tristan”, “Tonio Kröger”, Buddenbrooks, and The Magic Mountain, for example. Ironically, Mann himself was healthy enough to live to the age of 80. Not only great artists, however, have been inspired by illness. In recent decades, especially in the USA, illnessinspired writing has resulted in hundreds of autobiographical accounts of patients’ experiences with illnesses from AIDS, Alzheimer’s disease, autism, bipolar disorder, bulimia, cancer, through heart disease and lupus, to schizophrenia and stroke. A subgenre of autobiography, these accounts have spawned a critical and theoretical discourse of their own. In her book Reconstructing Illness: Studies in Pathography, Anne Hunsaker Hawkins offers a taxonomy of such works, classifying them according to the prevailing myths, whether archetypal or ideological, that authors use to confront or accept their illnesses. Not surprisingly, she finds that most people choose the archetypal myths of battle, journey, and death and rebirth in writing their pathographies. In narrative reconstructions of their illnesses, these patients seek to answer the questions of why they became ill, what their illnesses mean in the context of their lives, and how they can reshape their lives to accommodate the significant changes that illness brings. From her reading of hundreds of pathographies, Hawkins believes that writing their illness stories is the final stage in healing for many of the authors. That writing about physical disease or psychic trauma offers a powerful means of healing may seem selfevident not only to people who regularly read www.thelancet.com Medicine and Creativity Vol 368 December 2006
Lancet 2006; 368: S3–S4
pathographies but also to those who use writing as a therapeutic intervention with patients and trauma victims. Yet finding a way to demonstrate the healing effects of such writing to a sceptical biomedical audience has presented quite a challenge. Things changed substantially in 1999, however, with the publication of a JAMA article by Joseph M Smyth and colleagues, who had completed a randomised controlled trial of different writing interventions for patients with chronic illnesses— asthma or rheumatoid arthritis. The researchers concluded that writing about stressful life experiences, as opposed to writing about “emotionally neutral topics”, did indeed improve patients’ health, as measured with standard clinical tests and assessments. Although the research design and results were immediately called into question by sceptics, the article’s greatest contribution was the impetus it gave other researchers to investigate and report on similar writing interventions. Finding measurable outcomes that can demonstrate the beneficial effects of patients’ writing about their illnesses is essential if this low-cost, low-risk therapy is going to be made readily available to more patients and their families. We will need many more practitioners trained to follow the paths of trailblazers such as James Pennebaker, Marian MacCurdy, Charles Anderson, and Gillie Bolton. In The Wounded Storyteller: Body, Illness, and Ethics, published in 1995, just a few years after his account of his own illness experiences, the sociologist Arthur W Frank ups the ante. In his theory of postmodern illness and medicine, patients’ first-person narratives of illness are essential for those who cannot quickly be restored to the degree of health they enjoyed before illness struck. Of the three narrative types Frank thinks are available to patients—restitution, chaos, and quest—only in the quest narrative can the distinctive voices of the ill be expressed and heard. The quest narrative requires patients to accept illness as a journey that can lead to new insight, meaning, and purpose for their lives. Epiphany and transformation are the paradoxical gifts of illness, the boon conferred by the quest. Frank believes that it is incumbent on those who have returned from their illness quest to tell their stories, not only for themselves but also to others. He calls for these wounded storytellers to share their wisdom with people who are still well and may not want to hear. Correspondingly, he argues that there is an ethical obligation for the healthy to listen to the stories of the ill and thereby witness the human suffering they have endured. Telling and listening to such stories are moral acts that we owe each other as fellow human beings. Presumably Frank intends for the ill to offer their insights and wisdom so that others can learn from them and heal their lives without
The printed journal includes an image merely for illustration
Anne Hudson Jones is the Hobby Family Professor in the Medical Humanities and Graduate Program Director at the Institute for the Medical Humanities of the University of Texas Medical Branch in Galveston, where she has taught since 1979. A pioneer in developing literature and medicine as a subspecialty of the medical humanities, she was also a founding editor of the journal Literature and Medicine, which she served as editor-in-chief for more than a decade. She has a special interest in the therapeutic use of writing and in patients’ narratives of illness, especially narratives of mental illness. Institute for the Medical Humanities, University of Texas Medical Branch, 301 University Boulevard, Galveston, TX 77555–1311, USA (Prof A Hudson Jones PhD) Correspondence to: Prof Anne Hudson Jones [email protected]
S3
Succession Picasso/DACS, London 2006/AKG-Images
The printed journal includes an image merely for illustration
Picasso, Guernica
Further reading Anderson CM, MacCurdy MM, eds. Writing and healing: towards an informed practice. Urbana, IL, USA: National Council of Teachers of English Press, 2000. Bolton G. The therapeutic potential of creative writing: writing myself. London: Jessica Kingsley Publishers, 1999. Literature and Medicine: Writing and Healing 2000; 19: 1–135. Pennebaker JW. Opening up: the healing power of expressing emotions. New York: Guilford Press, 1997. Smyth JM, Stone AA, Hurewitz A, Kaell A. Effects of writing about stressful experiences on symptom reduction in patients with asthma or rheumatoid arthritis. JAMA 1999; 281: 1304–09.
S4
having to undergo the pain and suffering of illness personally. Yet even if all patients were able to tell their stories of illness and find healing through their telling, not all such stories would be told skilfully enough to convey wisdom and healing to others. In fact, only a few patients’ narratives, crafted with skill and touched by grace, can bridge the huge chasm between the worlds of illness and health. One narrative that has such power is JeanDominique Bauby’s The Diving Bell and the Butterfly. At the age of 43, Bauby was in his prime as the successful editor of the French fashion magazine Elle when he was suddenly struck down by a massive brainstem stroke on Dec 8, 1995. Three weeks later, as he began gradually to regain consciousness, it became apparent that he was suffering from locked-in syndrome: his remarkable mind was trapped in a body that was almost completely paralysed. He could move only his left eyelid. Such a nightmarish prospect is so horrifying that, in a primitive form of self-protective denial, most of us would prefer to believe that patients such as Bauby are not conscious of their fate. Reading his beautifully crafted book quickly strips away any such fantasy and makes it impossible to disregard either his profound suffering or his extraordinary achievement and gift. He composed, edited, and memorised the essays during his long nights alone and then “dictated” them, letter by letter, eyeblink by eyeblink, as the letters of the French alphabet were recited to him over and over again by Claude Mendibil, an editorial assistant sent by his publisher. The feat of composition is itself dazzling, but that is only the beginning of what Bauby has to offer. Although anchored in his bed by the heavy diving bell of his body, he allows his mind to fly free, like a butterfly, as he revels in the rich sensuous details of his memories and his imagination. Fed by a stomach tube, he remembers preparing delicious meals of snails, Alsatian sausage,
boeuf bourguignon, wine, apricot pie, melon, and red fruit, and savours in his imagination their vivid aromas and tastes. One week he flies to Hong Kong early each morning. Even though he has never actually been in Hong Kong, he knows that his photo is incorporated into the décor of a chair at the Felix Bar in the Peninsula Hotel there, and he enjoys the rather salacious thought of charming young Chinese women in miniskirts sitting on him. Some days he is able to enjoy being tended physically like a baby, having his bottom wiped; other days the experience brings him to tears. From all these accounts, readers can’t help but realise how lucky they are if they are still able to engage in the simple pleasures: bathing and dressing themselves, eating good food, drinking good wine, talking with each other, holding and physically touching others. Although his plight is horrific, Bauby triumphs just as surely as does Albert Camus’s absurd hero Sisyphus, who was condemned by the gods to the futile labour of pushing a huge boulder up a mountain time and time again, only to have to watch it roll back down each time. Like Sisyphus, Bauby transcends his fate because of the lucidity and joy with which he embraces his life even in the face of profound limitations and suffering. Despite his locked-in condition, he lives fully and passionately, bringing all his powerful intelligence, imagination, and will to bear on the moment before him. This is the gift that he offers his children, his friends, and his readers. Having witnessed his suffering, we all would do well to accept his gift of joy and try to live fully wherever we find ourselves, whether in illness or in health. Reflective writing can help both patients and clinicians in our mutual quest for healing, our desire for health and life in face of the inevitability of illness and death—what Camus calls the absurd and Milan Kundera calls the unbearable lightness of being. In the end, as in the beginning, is the word. www.thelancet.com Medicine and Creativity Vol 368 December 2006