Summary:

This DVD, a documentary of a medical student retreat to a museum, illustrates an approach to cultivating empathic understanding in medical students and residents by using the visual arts.  Florence Gelo, D.Min, created the arts program and the video. She is Behavioral Science Coordinator, Family Medicine Residency, Drexyl University College of Medicine. Students observe closely four paintings and are encouraged to experience their feelings about what they are seeing, and to express those feelings. The paintings are Prometheus Bound (Peter Paul Rubens 1618), Massacre of the Innocents (Pacecco de Rosa 1640), Rachel Weeping (Charles Wilson Peale 1618), and The Agnew Clinic (Thomas Eakins 1889; see annotation in this database).

Prometheus Bound is a disturbing scene of an eagle ripping the liver out of Prometheus. Students comment on the nakedness. the vulnerable position and the helpless expression on the face of this strong man, and on the eye contact between the eagle and Prometheus. In Massacre of the Innocents Dr. Gelo calls our attention to the faces of the mothers, helpless to save their children from the swords. In Rachel Weeping Gelo asks the students if they noticed the vials of medicine before the days of allopathic medicine.  Did they notice the one tear dropping from Rachel's face? (Peale added the medicine vials and his wife weeping to the original portrait of his infant daughter Margaret who died of smallpox.)

Two physician speakers, Horace DeLisser, and Rhonda Soricelli provide additional commentary about how engagement with a painting is similar to engaging with a patient, and how learning technology-focusing on the scientific and the medical- detracts students from learning to look at the big picture and the humanistic side of medicine.  Traditional medical education does not teach doctors to be present to patients, to sit by their sides, to listen and invite dialogue of suffering and to not deny those aspects of what it means to be ill.  Dr. DeLisser further acknowledged his personal struggles with feelings of frustration, anger and grief when patients died in the ICU.  The importance of talking about the vulnerability of physicians, the concerns about what else they might have done, propelled him to develop Grieving Rounds.

A cancer survivor contrasts a "callous" physician's response to her care with  another physician who exemplified someone who has the expertise not only around the disease, but  has the ability to acknowledge the whole person and offer his companionship to be there to the very end: "...what we're going to do is....We'll take this step by step."

 

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The Island is a collection of three stories sharing a similar setting (Italy) and populated by several characters who are outcasts. In the title story, the relationship between residents of an island and its medieval monastery, the Certosa, decays over time. When a talented stonemason is accidentally injured, his damaged senses are replaced by pain and suffering. His struggle and sacrifice, however, ultimately result in redemption for all those who inhabit "The Island."

In the eighteenth century, a 20 year old leper is condemned to live the remainder of his life in a tower fittingly known as the Tower of Fright. Although befriended by a stranger, the occupant of "The Tower" must nevertheless endure solitude, and he does so with the patience and grace of a saint. With the backdrop of a plague, "The Second Coming" is a medieval tale that recounts the torture of a doubting priest, an unknown pilgrim’s participation in a miracle, and the death of a pope.

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A teenager with a learner's permit drives his father to the emergency room. The father is hemorrhaging from the nose--the result of blood that is too thin and a punch thrown by his son. The father is abusive, especially when he drinks. Feeling endangered when his father shoves him, the boy retaliates by hitting the man in the face.

The father has valvular heart disease caused by a bout of rheumatic fever. He also has a cardiac arrhythmia requiring treatment with anticoagulation, but the dose of blood thinning medication must frequently be adjusted. After a frenetic ride, they arrive at the hospital and the father immediately enters the emergency room. The boy remains in the car listening to the radio and hoping the noise will somehow expunge the ugly words and perilous sentiment in his head. He discovers too late that a bloody nose can kill a man.

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A Doctor's Story of Friendship and Loss, this book is, in a sense, a sequel to Verghese's earlier memoir, My Own Country: A Doctor's Story of a Town and Its People in the Age of AIDS (see this database). The Tennis Partner tells the parallel stories of Verghese's disintegrating marriage as he establishes new roots in El Paso, Texas and of his new deep friendship with a (male) medical student who shares his passion for tennis. Both men are struggling to re-establish order in their personal lives: Verghese, in easing himself out of a dying marriage while trying to maintain a close relationship with his two sons; David (the tennis partner), in remaining drug-free and successfully completing medical training, which had been interrupted by his addiction.

Verghese, an experienced physician trained in infectious disease and an expert on AIDS treatment, relishes his role as David's mentor; David, a former tennis "pro," enjoys teaching Verghese how to play better. Playing tennis together for the sheer joy of it, each finds release. Tennis becomes the route through which each can unburden himself to the other, seeking solace in a difficult time. Through it "we found a third arena outside of the defined boundaries of hospital and tennis court . . . at a time in both our lives when friendship was an important way to reclaim that which had been lost." (339)

While the reader suspects that David must have a drug problem because the Prologue to the book, narrated in the third person, describes a "young doctor from El Paso" in drug treatment, Verghese the biographer has no inkling of the problem until one-third into his first person narrative. He is shocked, but in some ways the bonds of their friendship are strengthened. Each has only the other as a confidant.

David, however, has another addiction: women. The friendship becomes increasingly complicated as Verghese tries to remain both supportive and objective. Eventually David resumes "using" and Verghese must decide how to respond, both professionally and on a personal level. The turmoil in both lives ends tragically for David and causes profound grief in Verghese.

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Robert Murphy was a professor of anthropology at Columbia University when he became progressively paralyzed by an inoperable spinal cord tumor. His book is a personal journey through profound physical disability, an exploration of the self, and a study of the social construction of disability ["Disability is defined by society and given meaning by culture; it is a social malady" (4)]. As he writes The Body Silent he is virtually quadriplegic, hitting the keys of his computer with the eraser end of a pencil held in place by a 'universal cuff' wrapped around his palm. He is still traveling to Columbia to teach his classes.

Murphy applies the metaphor of an anthropological field trip to his experience: "This book was conceived in the realization that my long illness with a disease of the spinal cord has been a kind of extended anthropological field trip, for through it I have sojourned in a social world no less strange to me at first than those of the Amazon forests. And since it is the duty of all anthropologists to report on their travels . . . this is my accounting" (ix). Drawing not only on his own experience but also on research for which he received funding, Murphy instructs his audience in the metaphysics of his situation, and in the social as well as physical challenges of disability.

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Before Jamie Weisman went to medical school and became a physician she wanted to be a writer. As she struggled to make a career out of writing, she was forced to acknowledge that the obscure, life-threatening condition that had plagued her since adolescence could not be factored out of her plans. Writers don't have easy access to affordable health insurance and her monthly intravenous infusions of antibodies and interferon were very expensive. Yet they were essential to fend off infection, for she had an immune system malfunction.

Of course, finances were not the only reason that Weisman decided to go into medicine. As is often the case, her own experience of illness was an important motivating factor, as was the fact that her father, of whom she is very fond, was a physician. This memoir describes significant stages of Weisman's illness, her interaction with the physicians she consulted, and the issues she grapples with as she pursues her life as a physician, wife, and mother (she graduated from Emory University's school of medicine in 1998 and practices dermatology).

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The author, who writes and teaches nonfiction writing, began research on the lawsuit that forms the fascinating subject of this book in February, 1986. While the book focuses on Jan Schlichtman, the lawyer for the plaintiffs, and on his strategy in the case, there is much here that is relevant for health care professionals.

The lawsuit, which lasted nine years, concerned the tragic consequences of exposure to toxic waste: deaths from childhood leukemia; skin rashes, nausea, burning eyes, and other ailments. It was brought by eight families who lived in Woburn, Massachusetts against two companies, W. R. Grace and Beatrice Foods. The lawsuit claimed that these companies were liable for illnesses and deaths attributable to trichloroethylene (TCE) contamination of the water supply.

The story of how the families and the lawyers pieced together the fragments of the puzzle to determine cause and effect is gripping. One gains an appreciation for environmental epidemiology and the difficulty of reaching conclusions when only a small number of individuals are affected. Medical experts, public health specialists, geologists, civil engineers, government agencies, and the intelligence and driving motivation of the affected families and their lawyers were all necessary to establish the credibility of the claim.

In the end, however, the financial power and stonewalling of the companies, and the partiality of the presiding judge for one of the defense lawyers resulted in a verdict that favored the defense. Jan Schlichtman, the plaintiff's lawyer, was forced to declare bankruptcy.

Only when the Environmental Protection Agency (EPA) decided to launch a clean-up and filed suit against W. R. Grace and Beatrice Foods to pay a share of the cost, was any semblance of justice obtained. The EPA project will take 50 years, and even so, "all parties agree that it will prove impossible to rid the site of TCE and perc [tetrachloroethylene] completely . . . . " (Afterword; p. 494) Nevertheless, most of the families have not moved.

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In this superbly written essay, Nancy Mairs, a feminist writer who has multiple sclerosis, defines the terms in which she will interact with the world. She will name herself--a cripple--and not be named by others. She will choose a word that represents her reality, and if it makes people "wince," "[p]erhaps I want them to wince. I want them to see me as a tough customer, one to whom the fates/gods/viruses have not been kind, but who can face the brutal truth of her existence squarely. As a cripple, I swagger" (9). She muses on the euphemisms that are used by others, concluding that they describe no one because "[s]ociety is no readier to accept crippledness than to accept death, war, sex, sweat, or wrinkles."

Mairs describes the uncertainty of a (correct) diagnosis early on, the kind of person she was before, and how that has changed and not changed since her illness. She discusses her need for assistance, but balances that by saying that there are many people around her willing to help; she describes her dependence on her family and how lucky she was to have a husband and children before she was taken ill. Nevertheless, there "always is the terror that people are kind to me only because I'm a cripple" (15).

Mairs has many astute comments to make about how disability does not fit well in our youth-oriented, physical-fitness-obsessed culture, and on how social expectations influence whether she adapts or fails to adapt. She also understands what is at stake for the medical professionals who care for her: "I may be frustrated, maddened, depressed by the incurability of my disease, but I am not diminished by it, and they are" (20).

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Lucy Grealy, poet, tells the story of her childhood and young adulthood, a twenty year period of overwhelming physical and mental suffering. Yet the author is so resilient, so intelligent, so insightful, and such a good writer that her story transcends mere illness narrative. At age nine, first misdiagnosed and finally identified as having facial bone cancer (Ewing’s sarcoma), Lucy underwent several surgeries and more than two years of intensive chemotherapy and radiation treatments. Pain and nausea, anxiety and fear of more pain and nausea were only part of the ordeal.

The young Lucy became aware of what it is to be severely, chronically ill. Her sisters behaved differently toward her: they were polite. "Suddenly I understood the term visiting. I was in one place, they were in another, and they were only pausing." Even her father felt uncomfortable at her hospital bedside, and Lucy was relieved that he came infrequently.

But being at home was worse: in the hospital the other patients and the staff expected little from her and she felt no guilt or shame; amidst her family, she blamed herself for the tension, arguments over money, and her mother’s depression, even though these elements had existed prior to her illness. Her hair fell out and she became dimly aware that people were staring at her face. Nevertheless, "I . . . was naturally adept at protecting myself from the hurt of their insults and felt a vague superiority . . . . "

Well enough to return to school, Lucy’s disfigured face drew taunts from classmates; she understood finally that she was perceived as ugly and that she would not be loved. Only on Halloween, when she could mask her face, did she feel free and joyful, unconcerned about her appearance, "normal." Her moods now alternated between despair, determination, and escapism. She became convinced that only facial reconstruction and a restored appearance would make life bearable.

During years of reconstructive surgery Lucy evolved complex rationalizations to give meaning to her suffering. Two anchors had stabilized her existence throughout the misery: a passionate adolescent love of horses, and an adult love of poetry. Eventually outward appearance and inner life became harmonious. "The journey back to my face was a long one."

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The author, a scholar of autobiography and other forms of life writing, has expanded his scholarship to include what he calls "autopathography"--autobiographical narratives of illness and disability. This book is the result of an extensive study of such narratives. The works discussed are full-length and recently published--most were published in the 1980s and 1990s. Couser is particularly interested in issues of narrative authority, in how autopathography can be counterdiscursive to the prevailing biomedical narrative, and, especially, in how autopathography is counterdiscursive to the cultural stigmatization and marginalization that often accompany illness or disability ["insofar as autobiography is the literary expression of the self-determined life" (182)].

Since social/cultural counterdiscourse is of particular importance to Couser, he has focused on four specific illnesses/disabilities that have been associated with stigma: breast cancer, AIDS, paralysis, and deafness (182). His analysis of each condition is diachronic because he is searching for "the enrichment of the genre by successive writers who defy, complicate, or refine its conventions" (44). In addition, Couser asks, to what extent do authors "integrate illness narrative into a larger life narrative?" (14). He considers who narrates illness stories (biographer or autobiographer), how the stories are constructed, whether and how they achieve a "comic plot" and narrative closure.

The book's introduction (chapter 1, "Human Conditions--Illness, Disability, and Life Writing") provides a framework, relating what will follow to current issues in life writing, "identity politics," the culture of medicine, and illness experience, as well as to other work on illness narratives such as Anne Hunsaker Hawkins's Reconstructing Illness: Studies in Pathography and Arthur Frank's The Wounded Storyteller (annotated in this database).

Chapter 2, "Medical Discourse and Subjectivity," develops further the questions of narrative authority, representation, and resistance to a dominant medical or cultural narrative. Each subsequent section--breast cancer, AIDS, paralysis, deafness--is prefaced by an informative discussion of the cultural and narrative issues that are relevant to the particular condition; the subsequent analyses of individual texts further elaborate these themes.

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