Summary:

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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Professor of performance studies at New York University, Peggy Phelan narrates the story of a vision disorder that began when she was 23 years old, caused by "open-angle glaucoma," a difficult-to-treat condition in which the vessels draining ocular fluid periodically constrict. The episodes are excruciatingly painful and disorienting: "I feel a staggering push behind my right eye. The right upper half of my face is on fire: I am certain that my eye has fallen out of its socket . . . " (508).

Phelan resists patienthood, beginning with her first visit to the doctor, in which she underplays what has happened to her. Rejecting surgery, coping with side effects of the drugs she must take, and concerned about her ability to continue as a visual arts scholar, she muddles through for several years. Then she experiences a frightening, vividly described episode of temporary blindness, which is followed by a migraine headache. Six months later she agrees to have surgery.

During the surgery, under local anesthesia, "my eye, which is frozen, can still see things as they pass over it . . . colors I have never seen before . . . I am seeing the roof of my own eye from the interior side. It is utterly breath stopping. I cannot speak" (521-522). Enabled to see her eye from a perspective that was not available to the physician, and grateful for this "visionary experience," Phelan finally accepts her situation. She is not cured, although her condition improves. "My story is finally the same as those of all the other patients . . . The only difference between me and them comes from the words I’ve suffered to find and the words I’ve suffered to flee" (525).

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In his dedication to the book, the author addresses his sons: "The secret to life? Clean your room." The meaning of this becomes clear as Vernon traces the story of his brother, Paul, with whose death the book begins. Paul was 15 years older than the author and had been only a shadowy presence in his life. When Paul died, John Vernon had to exercise his duties as executor of Paul's "estate," an estate that turned out to be a festering, stinking nightmare of a house.

The house was filled with 20 years worth of trash that represented 20 years of Paul's life as a recluse. This memoir is an attempt to imagine Paul's life and to understand the reasons for the course it took. It is also an attempt to "bear painful news" and to reflect on his own reactions to what he discovers and to Paul's death.

In order to do this, Vernon calls on history, interweaving his memories and what was revealed of Paul's life after his death with discussions of the beliefs and discoveries of past eras. Finding himself nailing a thermometer to the outside of Paul's house, the author describes the development of thermometers, and the nature of heat ("Heat"). What, he asks, is meant by "normal" atmospheric pressure? How abnormal was his brother? After all, he bought nursing-home insurance a year before he died. And how normal is he, John Vernon, affixing a thermometer to this wreckage?

As he builds a primitive set of steps to the house, the author explores the history of tool making and speculates about what distinguishes humans from animals; did Cain murder Abel with a hammer, and is he, John Vernon, his brother's keeper? ("Tools") Similar expositions and speculations interdigitate in subsequent sections entitled "Body," "Corpse," "House," "Origins." [At the end of the book, there is a bibliography of references for each section.]

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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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Poet and essayist Floyd Skloot gives us his third memoir; each of the three concerns a somewhat different facet of his attempt to recover from and live with mental and physical damage resulting from a viral illness that struck him in 1988. This book, written approximately 15 years after the initial insult, "is a memoir of the reassembled life" (ix). Life for Skloot is different than before, but a kind of order--Skloot calls it "harmony"--has been constructed out of memory loss, mental disorder and incoherence: "I have learned to savor the fragments themselves, and to live in the moment" (xi). A World of Light is perhaps more a collection of essays than a memoir.

Most of part one and some sections of parts two (Ch. 5, "1957") and three (Ch. 15, "Taking Stock") concern Skloot's interaction with his aged mother as she slides further and further into dementia. Anyone who wants an idea of what it is like to interact with a person who has Alzheimer's disease should read these sections. Skloot masterfully reproduces the often bizarre conversations that occur--the sometimes maddening repetition of comments during attempts at conversation.

Skloot's mother admires his wife, Beverly, and repeatedly instructs them to marry each other, no matter how often they assure her they are already married. She forgets their previous visits to her in the nursing home, although they visit regularly, and becomes anxious when they leave, even though she isn't certain who they are. Skloot writes about how receptive his mother is to music, which delights her, and how she sings snatches of old songs triggered by the words of any offhand comment--phenomena that have been noted in some other descriptions of Alzheimer's patients.

The essays in part two look back on Skloot's childhood, his family's background, and on his development as a writer. Part three centers on his current life with his wife, Beverly, whose home in rural Oregon provides a refuge for them both (although they are now in the market for different surroundings).

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This is a vivid, partly autobiographical tale of clinical depression and the struggle for selfhood, written by an early feminist. The story is told by means of a journal which the narrator secretly keeps against the orders of her physician-husband, who believes this intellectual effort is contributing to his wife-patient's nervous condition. The narrator, a new mother, has been brought to a country house for a "rest-cure" by her husband; he selects for her the room with the yellow wallpaper, the (former) nursery, where the "windows are barred for little children" and the bed has been nailed to the floor.

Forbidden to write and think, prescribed for and infantilized, the narrator becomes increasingly dysfunctional. She obsesses about the yellow wallpaper, in which she sees frightful patterns and an imprisoned female figure trying to emerge. The narrator finally "escapes" from her controlling husband and the intolerable confines of her existence by a final descent into insanity as she peels the wallpaper off and bars her husband from the room.

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This great literate novel is the tale of Hans Castorp, the "delicate child of life" whom we first meet at age 23, ambivalently embarking on a career as a ship-building engineer in his home city of Hamburg, Germany. Before beginning his professional work, however, he journeys on what is intended to be a vacation and a pro forma visit to see his tubercular cousin, Joachim Ziemssen, at a sanatorium in the mountain town of Davos, Switzerland. Yet as the train pursues its course through the alpine scenery, Hans and the reader become aware that this is no ordinary journey. The impressionable Hans is transported away from the life and obligations he has known, to the rarefied mountain environment and insular community of the sanatorium.

At first uneasy, he soon becomes fascinated with and drawn to the routine established for the "consumptives" and to the social scene which flourishes there. Ordinary life seems increasingly unreal to him; his perceptions are heightened and he becomes aware of his physical, spiritual, and emotional vulnerability, as well as of his own sexuality. He is greatly attracted to one of the patients, a married woman of Slavic background, Madame Clavdia Chauchat. She reminds him of a schoolboy to whom he had been strangely drawn as a child. The turmoil brought on by this romantic obsession seems even to be reflected in his physical state, which is unstable and feverish.

As his intended stay of three weeks nears its close, the director of the sanatorium advises Hans to stay on to recuperate from a heavy cold, which appears to reveal an underlying case of tuberculosis. Hans is almost relieved at this news, for it provides him with a reason for remaining near Madame Chauchat as well as the opportunity to continue intriguing, profound discussions and cogitation about illness, life, time, death, religion and world view initiated by another patient, Herr Settembrini.

Settembrini is an Italian man of letters and humanist who believes that reason and the intellect must and will prevail, in daily life as well as in world affairs. He is contemptuous of the foolish flirtations and empty talk in which most of the sanatorium inhabitants indulge, and warns Hans repeatedly of the dangers inherent in cutting off all ties to real life and responsibility.

Nevertheless, Hans remains at the sanatorium for seven years, freeing himself from the constraints and conventions of life "in the flatlands" and instead engaging in a prolonged "questioning of the universe." This questioning includes a critical flirtation with death, stunningly described in the chapter, "Snow." Hans does not return home until the outbreak of World War I, in which he fights and survives.

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The poet considers pain as a place she inhabits, from which she could (hope to) escape, " . . . returned magically to life . . . ." But it is inescapable, "like your softest skin . . . a room no one else can come into . . . . " Finally, it is "only feeling" that defines this place, a place of silence, suffering, and separateness.

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This thought-provoking book is a collection of readings which the editors have found to be particularly useful for a course they teach, "What’s Normal?" It is their intent to facilitate consideration of how the world is experienced by those who are socially marginalized because of their physical appearance. The title of the anthology derives from an article written by the literary critic, Leslie Fiedler, and reproduced as the lead-off essay. Fiedler argues that the propensity of cultures throughout history to define the normal and to make political decisions about physical "abnormality" has reached a point where the rich will perpetuate the cult of normalcy (by paying for medical treatments that ensure it) while "the poor . . . will be our sole remaining Freaks."

The anthology is divided into several sections: Part I contains nonfiction articles, essays, and excerpts from books. Part II reproduces fiction, poetry, and drama and is further subdivided into "Abnormal Weight and Eating Disorders"; "Abnormal Height-Dwarfism"; and "Deformity and Disability." Many of the pieces have been annotated individually for this database (e.g. Fat by Raymond Carver, annotated by Carol Donley and also by Felice Aull and Irene Chen; Skanks by Rennie Sparks; The Fat Girl by Andre Dubus; Weight Bearing by Patricia Goedicke; Dwarf House by Ann Beattie; The Song the Dwarf Sings by Rainer Maria Rilke; The Dwarf by Ray Bradbury; The President by Donald Barthelme; The Birthmark by Nathaniel Hawthorne; The Elephant Man by Bernard Pomerance and others).

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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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