Summary:

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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Simi Linton, a major voice in disability rights activism, has written the story of her journey from car accident "victim" to college professor, disability studies scholar, and political activist. Her memoir of personal experience is interwoven with the evolution of her thinking about disability as social construct and the development of the disability studies movement and political engagement.

In 1971, Linton was a young married hippie--a college dropout hitchhiking her way to a protest march against the Vietnam War, together with her husband and best friend. Suddenly there was a car crash: her husband and best friend were killed and Simi sustained a spinal cord injury that left her legs paralyzed. There followed a year of hospitalization, surgeries, and in-house rehabilitation.

Although forced to be a recipient of attention and care, Linton even then was not inclined to play a passive role. "Even in this forest of overseers, where every move I made was scheduled . . . I had opinions. . . . Doctors . . . had saved me, and saved all my new friends, but I was outraged when they spoke for me or spoke down to a nurse I liked" (15). While still institutionalized, Linton took on the cause of petitioning the medical staff to educate patients like her about leading a sexual life as a disabled person. She determined to return to college as a psychology major so that she could eventually implement sexuality programs in rehab centers.

Linton details the activities of daily life that she had to adjust to and the strategies she adapted to maneuver, with her wheelchair, in her home, to go shopping, to travel, to attend classes. Family and friends and some social services were helpful but everywhere, life was designed for the abled body. This was a "fact of life"--"I had a feeling it could be different, but didn't know where to begin. I was having enough trouble just getting around" (28). She kept from thinking too much about her situation and her losses by staying busy and trying to be as independent as possible, but eventually needed the support of a therapist "who could bear my weight" (37).

It was in 1975 that Linton's disability rights "consciousness" was first stirred. On her own, she left her New York apartment to live in Berkeley, California for awhile. There she discovered "The Center for Independent Living" where the employees and volunteers were themselves disabled and whose goal was to assist disabled individuals to find ways of living independently. "I had been so tentative about my disability, and had, up to now, only ascribed a very personal meaning to it--this is what happened to me, this is the effect on me--that their forthright ownership of disability and their drive to take action based on the collective experience set my mind racing" (53).

Another defining moment came when Linton took a course on the psychology of women at Barnard College. "We examined the myths inherent in the so-called objective knowledge base" (64). Simi drew a parallel between knowledge generated from the male perspective and knowledge presented from the perspective of the abled body. "Unlike the [classroom] readings . . . which challenged traditional conceptualizations of women's roles and framed issues from an insider's perspective, the rehab literature recounted clinicians' views about disabled women's needs and experiences that seemed far removed from the way that I and the disabled women I had been meeting actually felt. It looked at us, and, it felt, through us, and I mistrusted all of it" (64).

The memoir continues with Linton's decision to work outside the realm of institutional medicine, her co-organizing the National Coalition of Sexuality in Disability, her falling in love with and marrying the man who is her (second) husband, her growing awareness of the silence surrounding disability and questions of access, and her dedication to change individual and society's discriminatory practices and to bring awareness of what we now call "the social construction of disability."

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Written in a style resembling religious litany, this is the tale of a disastrous teen-age marriage and its criminal consequences. The setting is California. Maria is a poor Mexican-American who meets and attracts Russell, a working class Anglo. Although ambivalent, Maria sees marriage to Russell as the path to American, white respectability. Her earlier hopes of achieving this status through her own efforts have been frustrated by the reality of poor academic performance. She is eager to get away from the household of her deeply religious mother. Russell is brooding, taciturn, and carries the physical and psychic wounds of an abused childhood--his father is a partially reformed alcoholic who deliberately burned Russell's hand.

The pair are ill-equipped for marriage or parenthood and Maria soon feels trapped. Their son, John, avoids provoking them by being a "good boy," hoping to prevent their frequent arguments. Russell's deprived childhood accounts, perhaps, for his obsessively jealous fixation on Maria. He is jealous even of the attention she gives their son.

The catastrophe that seems always close at hand finally occurs: Russell sets fire to his own child. The second part of the novel is told primarily from John's perspective as he undergoes a prolonged, painful rehabilitation and tries to find meaning in these events. It is also the story of the plastic surgeon who attempts to restore John's horribly scarred body and who has come to doubt the purpose of his profession (there is nothing he can do about destructive family relationships and psychic scars). Russell, who has been brutalized in jail, is released, seeking redemption. Fire, significant throughout the story, plays a final shocking (redemptive?) role.

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Subtitled "A Daughter's Search for Her Father," this memoir chronicles author Mary Gordon's quest to recapture the essence that was her father, a man she idolized and adored while he was alive--and long after his death when she was only seven years old. This death she saw as the single most defining event of her life. Identification with her father was essential to the conception of self, both as a creative writer, and as a worthwhile person. So she "entered the cave of memory" but found that memory was discordant with the facts.

Gordon's father was a writer, and a convert from Judaism to Catholicism. His persona was that of an intellectual, a graduate of Harvard, a frequenter of literary circles in Oxford and Paris. He claimed to be an only child, born in Ohio. As Gordon explores her memory and the historical record, forcing herself to confront her father's political opinions--opinions which are repugnant to her, and which she had earlier chosen to ignore--she uncovers a charade.

Her father, it turns out, was an immigrant from Vilna (in Eastern Europe) and had never finished high school. He had two sisters whom he never acknowledged to his family--one spent years in a mental institution where she ultimately died. Among his published writings are pornography and political diatribe (he was an anti-Semite and a facist); his writing was stylistically flawed.

This memoir is Mary Gordon's attempt to come to terms with what she learned about her father. It is the narrative deconstruction and reconstruction of the author's self; it is both biography and autobiography; a reflection on loss and recovery.

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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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Southern Baptist missionary Nathan Price brings his wife Orleanna and his four young daughters to the Belgian Congo in 1959, just before its turbulent passage into independence as the state of Zaire. The Prices’ stay in the tiny village of Kilanga occasions escalating conflicts of cultures and values. The differences between the social, religious, and political habits of the United States and Africa are a source of both wonder and strife.

Orleanna and most of her daughters develop bonds with the people of Kilanga whose dimensions are much deeper than they first realize. At the same time, the family finds itself increasingly at odds with each other. All the women are engaged in a passage to personal identity and independence from Nathan: Orleanna, the dutiful minister’s wife; materialistic teenager Rachel; fervent, idealistic Leah, who emulates her father until it’s impossible to continue; her brilliant twin sister Adah, who walks with a limp and perceives the world in palindromes; and adventurous five-year-old Ruth May.

While all the women are changed by Africa, Nathan becomes more and more zealous in his refusal to change. The novel draws Nathan as a man whose identity has been definitively shaped by a World War II trauma that launches him on a downward psychological spiral from which there is no exit.

The novel is broken into seven books, all but the seventh bearing the titles and epigraphs from books of the Hebrew Bible and Apocrypha. Within the sections, the story is told as a round robin, with the Price women contributing alternating first-person narrative.

The daughters’ stories begin in 1959 in Africa and record events as they happen, gradually working their way forward to the 1990s. Their mother, in contrast, tells her story retrospectively, writing from Sanderling Island, Georgia, long after her return from Africa. Nathan is the only family member who never narrates.

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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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Lenny's development from childhood to adolescence concurs with India's independence from Britain and the partitioning of India into India and Pakistan. The interwoven plots give each other substantial meaning. Partly because Lenny's family are Parsees, a religious and ethnic minority that remained relatively neutral in post-Partition religious conflicts, she has access to people of all ethnicities and religions, both within Lahore and in other locales. More significantly, she has access to a wide variety of viewpoints both pre-and post-Partition through her Ayah, a beautiful woman whose suitors are ethnically and religiously diverse.

Lenny's passionate love of Ayah and the loss of innocence that accompanies their changing relationship through the Partition is an energetic center to the plot. Lenny's relationships with her mother, her powerful godmother, and her sexually invasive cousin are also important to the novel. Lenny's polio forms a significant early narrative thread. Other minor but compelling subplots include Lenny's parents' changing relationship, the murder of a British official, and the child marriage of the much-abused daughter of one of Lenny's family's servants.

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According to the U.S. Department of Health and Human Services, nearly thirty-one percent of the American public is obese; obesity accounts for 300,000 deaths a year, making it the second-most common preventable cause of death after cigarette smoking; individuals who are obese have a fifty to one-hundred percent increased risk of premature death from all causes.  On the opposite end of the scale, so to speak, is anorexia, which, as one of the deadliest of psychiatric diseases, claims up to fifteen percent of its sufferers who either die of suicide or complications related to starvation; about one-third spend their lives dominated by their obsession with food, and almost half never marry. 

How can we ever understand the psychological, physical, emotional, cultural and spiritual complexity of eating disorders, whether they result in morbid obesity or in a starving body digesting itself?  Ann Pai's memoir opens a window to reveal the inner world of a food obsession, her own, and holds up a mirror to reflect the outer experience of a dying, five hundred fifty pound woman, her sister.

The narrative weaves together three strands:  the sweet but unsentimental history of two sisters growing up in the midwest--Joyce, the elder of the two, and Ann, younger by almost five years; the detailed and horrific account of Joyce's sudden hospitalization on September 11, 2001, and her inexorable decline through multiple, undiagnosable and fatal illnesses as the result of her obesity; and the stream-of-conscious and raw monologue of Ann's own struggle to manage a compulsive eating disorder.

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