Summary:

This collection is introduced with an essay by Suzanne Poirier (editor of the journal, Literature and Medicine). The collection, describes Poirier, looks at how such equations as "sex = disease, homosexuality = disease, promiscuity = disease, and, finally, homosexuality = promiscuity = disease" are, in fact, being challenged, resisted, and "rewritten in a healing way in today's writing about the epidemic [found] in the literary presses, obituary columns, and even freshman compositions." The book contains thirteen essays and an annotated bibliography of AIDS literature from 1982 through 1991.

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Yolanda Ramírez, a phlebotomist in Coachella Valley, California, begins worrying, in 1983, about the deaths of gay men, hemophiliacs, and women who have had cosmetic surgery. The novel unfolds with her explorations into the connections among these deaths, but it also explores Yolanda’s relationship with a gay couple, one of whose members has AIDS, the growing romantic relationship between her and Marina Lomas (who has run away from an abusive husband with her small daughter), her relationship with her father, Crescienco.

Crescienco, employed as a gardener for Eliana Townsend (whom he loves and who still has the scars from her cosmetic surgery), watches her slowly die from some mysterious and debilitating disease. Finally Yolanda convinces the hospital that her hunches about the mysterious AIDS virus having infected the blood supply are correct.

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The speaker addresses her friend, a caregiver (it’s not clear what her or his status is, possibly a volunteer) in an infectious disease clinic, noting how the friend empathizes with and carries the words of the patients within her- or himself.

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The title of Scannell’s book refers to an episode in her work with AIDS patients when she realizes that the "good doctor" she’d been taught to be--scientifically precise, medically focused and aggressive--was not what many of her patients wanted or needed. From that point on, she strove to understand the nature of her patients’ suffering and how they might be cherished and morally supported during the last weeks and days of their lives. In a series of essays she offers haunting portraits of the men and women she served--and of herself, as she learns to recognize and grapple with her own anger, grief, comfort, and joy.

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Writer Paul Monette's first-person account of living through his lover Roger's last nineteen months with AIDS, from diagnosis to death (1986), told in language that is poetic and highly articulate. The couple faces not only progressive physical degeneration (Monette calls time with AIDS a "minefield") but also the agonizing issues of truthtelling with their families, friends gay and straight, and the world, in "the double closet of the war."

Fact-finding is a constant obsession in this story, not only about who is positive and who knows, but also in the rapidly-changing medical arena, where through Monette's extraordinary efforts Roger becomes the first person west of the Mississippi to be put on the drug, AZT. Monette is so devoted a caregiver that he often loses himself--a problem he solves in part by turning to the subject of AIDS as a writer.

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This film rendition of Randy Shilts's documentary book by the same name tells the scientific, political, and human story of the first five years of AIDS in the U.S.--roughly 1980-85. Mainly it is a story of dedicated medical researchers groping to understand the horrifying and mysterious new disease and simultaneously battling the public fear and indifference that prevented, during those Reagan years, both public funding of their research and acceptance of their findings.

The central figure is Dr. Don Francis (Matthew Modine), veteran of the World Health Organization's smallpox eradication program, and the horrifying outbreak of hemorrhagic fever along the Ebola River in central Africa in 1976. Working at the Center for Disease Control in Atlanta with no money and no space, Francis pursues his theory that AIDS is caused by a sexually-transmitted virus on the model of feline leukemia. His individual antagonist is Dr. Robert Gallo (Alan Alda), the discoverer of HTLV (the human T-cell leukemia virus), who cuts off assistance when he hears that Francis has shared some experimental materials with French researchers. (Gallo sees the French team mainly as his rivals for a Nobel prize.) Gallo finally claims a French retrovirus discovery as his own and thereby acquires a coveted patent.

Besides lab work and big scientific egos, the film shows us lots of grass-roots, shoe-leather epidemiology, especially in San Francisco; the laborious questioning of AIDS patients about their sexual histories, in search of the chain of infection and its beginning, "patient zero." The film's plot ends with Reagan's 1984 re-election and Francis's departure for San Francisco to set up as an independent researcher. Preceding the credits are a number of updates that take AIDS and the story's heroes and villains from 1985 to 1993, all this appearing over stills of famous AIDS victims and crusaders.

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This is the second edition of Hawkins's groundbreaking work on illness narratives--autobiographical and biographical accounts of illness that she calls "pathographies." This edition preserves the text of the earlier (1993) work but updates it with a new preface and a new concluding chapter. This new chapter (chapter 6) surveys works written since 1992 and expands the discussion of mythic thinking and narrative.

Hawkins posits that mythic thinking pervades illness writing. Mythic constructs, she argues, organize the way patients understand their illness, how they interact with the institution of medicine, and how they write their narratives. Myths are formulative in that they attempt to create order out of the disorientation of illness. In the texts selected, Hawkins identifies "archetypal" (transcultural, transhistorical) myths--myths of journey, battle, and death and rebirth (discussed in the first edition as well).

In this edition Hawkins introduces a new term: "ideological" myths. Ideological myths are "linked to a particular culture at a particular time" (xiii). In this category is the myth of healthy mindedness, a way of thinking that was labeled "mythos" in the earlier edition. Hawkins proposes two additional ideological myths, discussed in chapter 6: the Gaia myth (that links illness and environmental problems), and the "myth of narrativity" (xiii).

The book's chapters are organized around the myths enumerated above, with many examples. Most of the works discussed were written in the latter part of the 20th century, but there are several pages devoted to John Donne's Devotions upon Emergent Occasions (see annotation in this database). Hawkins determines how, in specific cases, the myths she has identified function--whether they are "enabling" or "disabling," and whether they are "medically syntonic or dystonic" (21-24). Myths that have an enabling function are adaptive, useful, help recovery or adjustment, ameliorate suffering. They are often medically syntonic--compatible with the belief system of Western medicine. One notable exception to this is Hawkins's paradigm of the ideological "myth of healthy mindedness," in which to be enabled often means to controvert traditional medical practices.

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Peter Selwyn spent the first ten years out of medical school at Montefiore Medical Center in the Bronx, caring for HIV-positive patients--mostly intravenous drug users and their families--in the early years of the AIDS crisis. As he worked with dying young men and women and their families, Selwyn returned to his own unexplored pain surrounding the loss of his father, who fell or (more likely) jumped from a 23-story building when Selwyn was a toddler. Mirroring their function in Selwyn’s life, the stories of the five patients who most affected him serve in this book as the threshold to the narrative of how Selwyn investigated, mourned, and commemorated his father’s death, finally revaluing it as central to the person and doctor he became.

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Yesterday (Leleti Khumalo) is a young woman living in a tiny rural town in Kwazulu province in South Africa with her six-year-old daughter, Beauty (Lihle Mvelase). Yesterday becomes ill and, after several failed attempts to be seen by the lone doctor at a clinic several hours' walk away, is diagnosed as HIV positive. At the doctor's urging, she travels to Johannesburg to find her husband (Kenneth Kambule), who works on the mines there, to tell him of her diagnosis and that he needs to be tested. He beats her viciously and sends her away.

Months later, he returns to the village, dying of AIDS. He has lost his job. She takes care of him. Rumors spread in the village that Yesterday's husband has "the virus." The people begin to avoid them both, and the (true) story is told of a young woman in a nearby village who, after moving to the city and then returning home with AIDS, was stoned to death by her people. There is no room for her husband at the hospital, so Yesterday builds a scrap metal hut outside the village and cares for him there until he dies.

At one point the doctor observes that Yesterday's body is resisting the disease well; she replies that it is not her body, but that "I have made up my mind: until my child goes to school I will not die."

When the new school year begins, Yesterday gives a delighted Beauty her school uniform, and the schoolteacher promises Yesterday that she will take care of Beauty. Yesterday watches as Beauty begins her first day at school and then walks home alone.

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Tessa Quayle, the young wife of a British civil servant in Kenya, is mysteriously murdered. Tessa, a lawyer, had been an outspoken human rights activist, and something of an embarrassment to her husband. But shaken from his marital and political complacency by her death and the rumors that quickly surround it, Justin Quayle sets out to solve the mystery and in doing so inherits her cause.

Tessa had discovered, as Justin now learns, that a new tuberculosis drug was being prematurely tested on Kenyan patients: clinical trials were effectively being carried out on the African population by the drug's giant pharmaceutical producer without the patients' knowledge or consent, but with the support and cover of a global corporation with African interests and of the British High Commission in Kenya. Lethal side effects and deaths were being concealed, the drug retitrated and retested in preparation for its safer and more lucrative release in the west in time for a predicted rise in incidence of multi-resistant strains of TB.

Justin, now a kind of rogue agent, uncovers the layers of sinister plotting to be expected in one of Le Carré's intelligence thrillers, but in the process we are led to consider, vividly, the interlocking roles of international biomedical research, postcolonial political interests, and global capital in determining the fates of impoverished, uneducated, and deeply vulnerable patients in developing countries--as well as the fates of those who try, often against all odds, to offer them the best available care. The novel also gives us, in Justin Quayle's odyssey, a moving study of desire, loss, regret, and, finally, outraged action.

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