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of Alpha Omega Alpha honor medical society Add Winter 2008 Alpha Omega Alpha Honor Medical Society ´Αξιος ώφελεˆιν τοὺς άλγοˆυντας “Worthy to Serve the Suffering” Managing Editor Editor: Editor Emeritus: Associate Editor and Managing Editor (in memoriam) Administrator Designer Portland, Oregon Editorial Board Art Director and Illustrator Atlanta, Georgia Manuscripts being prepared for The Pharos should be typed double-spaced, submitted in triplicate, and conform to the format outlined in the manuscript submission guidelines appearing on our website: www.alphaomegaalpha.org. They are also available Requests for reprints of individual articles should be forwarded directly to the authors. © Circulation information: The Pharos is sent to all dues-paying members of Alpha Omega Alpha at no additional cost. All correspondence m.celebi@alphaomegaalpha.org Officers and Directors at Large President Vice President Secretary-Treasurer Augusta, Georgia Seattle, Washington Councilor Directors Pennsylvania State University and Science Student Directors www.alphaomegaalpha.org
Editorial “There is nothing more hostile than water turning into ice” —Paul Klee, on his Raynaud’s 1p21 David P. Hill Edward D. Harris, Jr., MD Until the early 1970s, the physician’s understanding of his or her patient’s disorder during their first encounter was obtained most often in the form of a highly scripted, dry, verbal questionnaire that the physician confidently expected was complete. The doctor asked, and the patient answered, providing the principal ingredients of the information base about his or her affliction. Then, thirty-five to forty years ago, as Delese Wear and her colleagues pointed out in an insightful essay in The Pharos in 1999, “the postmodern experience of illness begins when ill people recognize that the medical story only tells part of their story.” 2p34 The authors drew upon the work of medical sociologist Arthur W. Frank, who provided a useful classification of the ways that patients sense and construct their illnesses, opening the opportunity for physicians to learn (when they listen and ask the right questions) how illness has affected and transformed them. 3 Frank described three types of narratives most patients use. The first, the type that doctors want to hear as often as possible, is the restitution narrative. The patient says, “I know I am sick, but I can and will get well again.” The opposite type is the chaos narrative: the patient is despairing, vulnerable, impotent in the face of this crisis, and not at all optimistic about recovery. The quest narrative, more difficult to understand when a patient is moving through it, is the story that the patient wants others to hear. Whether or not a return to normal for herself is possible, she uses suffering to move others forward in ways such as spearheading patient support groups, or being an activist for federal funding. Wear urges physicians, during their first and subsequent encounters with patients, to look for clues while listening to them tell their stories. Is it a restitution, chaos, or quest narrative that the patient tells? The physician must then seek to enter each patient’s world by listening. Generating almost infinite complexity in this scheme is that the narrative of each patient will be affected by the acuity, pattern, and degree of chronicity of the particular affliction, and the extent to which it is visible or audible to others. The amputee and paraplegic never need to explain to others their principal disorders. In contrast, the man who has had surgery and radiation for metastatic prostate cancer has, generally, no outward signs of his illness. He must make a decision, often with help from his physicians, about how much to let his fear of the future affect his work life, family interactions, and friendships. To whom does he tell his narrative? A striking essay by James Gamble describes the life and paintings of Frida Kahlo, an artist revered in Mexico and elsewhere, who died at age forty-seven in 1954. 4 A victim of polio and subsequently of trauma to her spine and pelvis that generated unceasing pain, she painted self-portraits that were nonverbal cries of chaos narrative. Did depicting her nude body split open to reveal a crumbling pillar with nails penetrating her flesh give her any solace or respite from agony? We must hope so. In this issue, Richard Silver gives us another example of how the narrative of illness can be expressed through nonverbal creativity. 1 Paul Klee developed the first symptoms of scleroderma in his mid-fifties. Put yourself not in the role of a physician listening to Klee’s choice of narrative, but rather into the mind of Klee himself as his disease developed. Imagine his gnawing concern at the first episode of Raynaud’s phenomenon, his fingers turning white and being searingly painful in cold weather. Then one day he feels stiffness in his hands. The stiffness progresses. He finds that he can no longer pinch up the skin from the back of his hand. The skin is becoming leathery and thick. The tips of several fingers turn black and auto- amputate. The skin changes involve forearms and then his face, sparing only the loose skin around his eyes. Several years go by . . . and compounding the skin changes are the insidious onset of fatigue, dysphagia, chest pain, and difficulty breathing with the slightest exertion. There is no relief, only progression to his death. What other narrative than chaos could Klee express? What could have given comfort? It is unlikely that his physicians had seen many similar rapidly progressing cases. Few, it is likely, could empathize with his verbal narratives, and Silver notes that Klee rarely spoke of his illness. His narrative was expressed by his paintings. He could pour those feelings of chaos into art, generating 1253 works the year before his death. Of the tightening in his face, he painted Maske. Months later, Tod and Feuer presaged his death—but it was his creative talents that resolved his chaos. He could say, “I won’t mind dying if I have done a few more good paintings.” 1p22 He had added a fourth form of narrative: visual creation. If only it were possible for each of us to have such a resource for the illnesses that lie ahead. Lacking that talent, we must rely on one of the three types of narrative. References 1. Silver RM. Captive of art, not disease: Paul Klee and his illness, scleroderma. Pharos Winter 2008; 71: 16–24. 2. Wear D, Jones T, Nixon LL. Making meaning of illness: Arthur Frank’s The Wounded Storyteller. Pharos Winter 1999; 62: 33–38. 3. Frank AW. The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University of Chicago Press; 1995. 4. Gamble JG. Frida Kahlo: Her art and her orthopedics. Pharos Summer 2002; 65: 4–12. The Pharos/Winter 2008 1
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