Summary:

This anthology of 38 autobiographical works by women with HIV/AIDS is edited by two women who are HIV positive. The introduction summarizes how the editors solicited writing or other expressions from HIV-positive women in order to publicly recognize the stories of women living with HIV/AIDS. Although most of the works are from Canada and the USA (including some from native populations), 12 other countries are also represented, including many African and European countries. Most of the pieces are prose, but poetry, art and photography are also included.

The pieces are very diverse and reflect multiple perspectives: activist, feminist, mother, teenager, drug addict, prostitute, lesbian, heterosexual, victim of abuse, etc. The stories are personal, introspective, direct and specific. Yet, throughout the anthology, universal themes of loneliness, isolation, hope, love and love lost recur.

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DeSalvo, a writer and biographer, relates her experiences with adult onset asthma. Because her symptom complex centers on coughing, rather than wheezing, there is a delay in diagnosis and appropriate treatment. Nine months after her symptoms begin, she reads an article about asthma and sees a pulmonologist who confirms the diagnosis.

The author details the many ways that her life has changed, the medications and precautions she must take, and mourns the loss of her earlier easy-breathing life. She is helped by a saint-like husband, open access to medical care and medication, and a compulsive avoidance of triggering agents.

As a writer interested in writers' lives, the author examines the effect that asthma had on the writing and lives of Marcel Proust, John Updike, Djuna Barnes, Olive Schreiner, Michael Ryan, and Elizabeth Bishop. Due to her own traumatic childhood (including being fondled in the bath) and her readings, the author concludes that "asthma is caused by terror, by trauma, by abuse (of a child, of the environment), by deprivation" and specifically that "asthma is a breathing disorder that is caused by abuse and that it is probably a manifestation of post-traumatic stress."

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The title and first line, "My Beautiful Grandmother / died ugly," set the tone for contrasts that continue throughout the poem: health and illness, beauty and ugliness, youth and age, life and death, staying and leaving. The poem initially describes the grandmother as aged, ready to die, anorexic and in such pain that she required six years of morphine. The needles used to inject medication, which left her arms bruised "black and blue" are contrasted with her previous embroidery needles, which she had used to stitch "pink cornucopias / on square after square of white cotton."

The grandmother was ready to die for a long time, to a place and time apart--to the mountains and to her spirited youth, when she was "dashing" and her "mind was as quick / as the stitch of a sparrow's wing." The poem continues with the compression of time yet marking the effects of time: old love letters to the grandmother crumble "like stale bread" in the hands of the granddaughter. The poem concludes with a short stanza alluding to difficulties that the granddaughter experienced leaving the Georgia town where her "beautiful grandmother stayed."

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This outstanding anthology of poems, stories, excerpts and essays by African-American writers is prefaced by a poem ("Aunt Sue’s Stories" by Langston Hughes), a foreword, two essays and an introduction. The book is then divided into three sections: Section I, Illness and Health-Seeking Behavior; Section II, Aging; and Section III, Loss and Grief.

Each section begins with an introduction which clarifies the choice of the section’s theme and briefly describes each piece. At the conclusion of each section is a list of ten to fifteen questions which "are intended for personal reflection and group discussion." Brief autobiographical information for each of the thirty-one authors is presented in Appendix 1.

As Secundy notes in the introduction, a divide exists between the health care worker and patient, which is particularly prominent when color and economic status are different between them. Secundy, as an educator in the medical humanities, selected pieces that reveal "the significance of color and social distinctions" when African-Americans face illness or enter the health care system.

The selections chronicle struggle and survival, illness and loss, humiliation and pride, triumph and sorrow. These pieces speak to all of us, as Edmund Pellegrino states in his essay, "Ethnicity and Healing": "[p]aradoxically, as we learn more about the uniqueness of African-American culture, we are drawn closer to the common humanity we share with the subjects of these stories and poems."

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During the opening credits, the camera slowly pans over the myriad medications for Marvin (Hume Cronyn), the elderly, bedridden invalid cared for round-the-clock by his daughter, Bessie (Diane Keaton). The film opens with Bessie visiting Dr. Wally (Robert DeNiro), a pathologist cum primary care physician, for diagnostic tests which show that she has leukemia.

Bessie also takes care of her Aunt Ruth, whose electric unit for pain relief and penchant for soap operas provide comic relief in this bittersweet drama about families and responsibilities. Because Bessie's best chance for survival is a bone marrow transplant, she contacts her sister, Lee (Meryl Streep), estranged since their father's first stroke and Lee's decision not to help care for him.

Lee's oldest son, Hank (Leonardo DiCaprio), is a troubled seventeen-year-old who sets fire to their home and is hospitalized in a mental institution. Released for this special trip to visit his Aunt Bessie, Hank continues his rebellion by refusing to be tested as a possible donor. Lee is a dysfunctional mother: she does not respond to her son's apology regarding the arson, she has her younger son light cigarettes, and she confuses discipline with control.

The family unites in and around Marvin's room. Reunions are never as smooth as planned, and tensions, stored bitterness, and anger erupt. The sisters confront each other in their failures as sisters--Bessie had never contacted her nephews in any way and Lee had never looked back. But through it all, love and caring emerge: the sisters come to a new understanding, Bessie's reaching out to rebellious Hank is reciprocated, and Lee even learns to communicate caring to her son.

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Worlds Apart is a set of four documentary videos designed to stimulate thought and discussion about the effects of culture on communication and medical decision-making. Each video encapsulates the story of a real patient and his or her interactions with physicians and family.

The four videos are: (1) Kochi Story--an Afghan man, diagnosed with stomach cancer, decides about chemotherapy amidst miscommunication due to translation issues and religious convictions; (2) Chitsena Story--the mother of a four-year-old girl from Laos is caught between physicians who tell her that her daughter needs surgery to correct an atrial septal defect, and her mother who upholds the traditional Khmu beliefs that scars, including surgical scars, are injurious to a person in future lives; (3) Phillips Story--an African-American man on dialysis discusses the prejudices against black people in the health care system, particularly the decreased chances for receiving a renal transplant; (4) Mercado Story--a 60-year-old Puerto Rican woman who lives in Hell's Kitchen, New York City, explains the complex social situation which affects her ability to take care of her chronic health problems, such as diabetes and hypertension.

The films depict the patients and families in various settings--in doctors' offices, at other health care facilities, at home or work, during religious ceremonies. Phillips Story is different in that only the patient speaks during the film--in the other three stories we hear family members, translators, and physicians. The pitfalls of translation by a family member or friend are discussed, as well as the need for the physician to elicit information from patients about the social contexts that may affect their health and decisions.

For example, Mr. Kochi's religious beliefs contravene the use of continuous infusion chemotherapy, but not other regimens--this distinction is not elucidated for many months. Hence cultural competency in health care requires that the provider not assume reasons for patients' behaviors and decisions but rather emphasizes communication to understand the particulars of the situation.

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A man begins to lose his word-finding abilities, his ability to perform everyday activities and his ability to communicate with his wife. He realizes his growing losses and incapacities. Even as he worries how to make amends to his wife, he grows distant and isolated. The poem ends with a vivid scene: the man stands in front of the woodpile with the axe raised--he looks at but does not recognize his wife screaming behind the closed bay window. "[H]e never / hears what it was she never said."

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The lives of writer Cathy Crimmins, her lawyer husband Alan Forman, and their seven-year-old daughter were changed forever on July 1, 1996, at a lake near Kingston, Ontario. "Alan’s brain got run over by a speedboat. That last sentence reads like a bad country-western song lyric, but it’s true. It was a silly, horrible, stupid accident." (p. 5). While Alan steered a small boat back to dock at the end of their vacation, a teenager drove a speedboat literally over him, causing major traumatic brain injury (TBI) including seizures, coma, hemorrhage and paralysis.

Crimmins chronicles her husband’s remarkable recovery with a mix of humor, medical information, anger at HMO denial of benefits, and gratitude for the care of physicians, nurses, therapists, EMT, friends and family during this grueling, and in many ways, never-ending ordeal. Although Alan survived -- and is now capable of walking, speaking, reading, loving, working and driving -- he is a different person. The injury to his frontal lobes causes him to be disinhibited, erratic, angry, irrational, petulant, obsessive, devoted yet cruel to his daughter, and prone to severe "cognitive fatigue."

TBI is a bizarre, unpredictable illness. Crimmins notes that the degree of Alan’s recovery is atypical for the force of his trauma. In addition, TBI survivors say and do wacky things: "Where is the mango princess?" was one of Alan’s first utterances after emerging from his coma. Alan’s pre-accident sharp-edged humor was replaced by bland affability and a disturbingly vacant gaze. Yet some of what he says and does is heart wrenching and poignant.

The book clearly documents that the trauma is not limited to the patient. As Crimmins so eloquently and honestly recounts, she, her daughter, and all who knew Alan were traumatized by the accident and its aftermath.

Crimmins is an aggressive caregiver, thrust kicking and fighting into the caregiver role. Her advocacy for her husband, including research into the best rehabilitation facility, day hospital, vocational rehabilitation program, doctors, therapists, etc., was unwavering and crucial to his optimal care and outcome.

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Constructed as a triptych, the novel chronicles several generations of a Scottish family, the McLeod’s, across three Junes: Part I Collies, 1989; Part II Upright, 1995; and Part III, Boys 1999. In the first part, patriarch Paul McLeod assuages his grief and loneliness following his wife’s death by traveling to Greece on a tour. He tells the tour guide about his wife’s lung cancer: "A terrible ordinary death, you might say. Or an ordinary terrible death." (p. 23) Paul’s unrequited yearning for Fern, a young artist, heralds a succession of missed opportunities for expressions of love involving the McLeod’s.

The second part is a first person narrative by Fenno, Paul’s eldest son. Fenno, the gay owner of a Manhattan bookstore, cares for Malachy, a New York Times music critic, who has AIDS. Paul’s death brings the three sons together (Fenno and his younger twin brothers David, a veterinarian who lives in Scotland with his wife Lillian, and Dennis, a chef, who arrives from France with his wife and children).

The family relationships are complicated, and David’s infertility leads to revelations about strengths and weakness of various family members. Meanwhile, Mal’s illness and his decisions about controlling the end of his life, also give Fenno insight into loyalties and family secrets.

The last section, a coda, reverts to third person narration and reintroduces Fern, now widowed due to a freak accident and also pregnant. Themes of parenthood, responsibility and relationships continue to be developed.

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It was during a trip to Paris in 1985 to accept a prestigious writing award that William Styron first realized that the melancholy which had been descending upon him for months was part of the onset of a crippling depression. In this brief book, Styron describes his own experience and eventual recovery, and touches upon the history and clinical aspects of depression as he talks about the many writers who have also been afflicted with this disease.

Styron gives both a retrospective account of the beginnings of his illness, and details his own theories (his abrupt intolerance for alcohol, a possible family history, characters in his early writings in whom he described symptoms strikingly similar to those he would develop himself years later) about the origins of his depression.

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