Summary:

The story of a woman artist's slow decline into dementia and death as told through the eyes, words, and reflections of her philosophy professor son. Through his memories of their 1950s life together, he reconstructs a speculative analysis of her early married life with his soil-scientist, Russian-immigrant father.

The one older brother becomes a neuropathologist who investigates the very disease that slowly strips their mother of herself. Their father tends to her growing needs at the family farm, but he dies suddenly and she must be placed in an institution where one nurse alone seems to respect her dignity.

The brothers' rivalries and misunderstandings are recapitulated in their different responses to their father's death and their mother's illness: the physician retreats to scientific explanations of the "scar tissue" in her brain; the philosopher looks for evidence of personhood and for reassurance that death should not be feared. His obsession with his mother's condition stems from a deeply felt sense of guilt; it destroys his marriage and condemns him to depression, hypochondria, and shame as he creates and diagnoses the same illness in himself, long before it can be detected by doctors.

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Augusto and Michaela Odone (Nick Nolte and Susan Sarandon) are the adoring parents of a bright little boy who inexplicably develops alarming behavioral problems, after they return from working in the Comoro Islands. A series of investigations results in a diagnosis of adrenoleukodystrophy (ALD), but the boy rapidly deteriorates into a bed-ridden, inarticulate state. Frustrated by the medical profession's inability to help, Augusto and Michaela embark on an odyssey of salvation, studying lipid metabolism, promoting international conferences, and trying to disseminate their findings to other parents.

Their insights lead them to experiment with at least two effective therapies, one of which is erucic acid (Lorenzo's oil). Michaela feels guilt as well as grief, when she understands that the X-linked disease is passed from mother to son. In an effort to keep Lorenzo at home, she refuses to admit the extent of his disability, alienates her family, dismisses nurses, and assumes most of the care herself, nearly ruining her own health and her marriage. The film ends hopefully with tiny signs of recovery in Lorenzo. The credits roll over the faces and voices of happy, healthy-looking boys who have been taking Lorenzo's Oil.

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Fiona has Alzheimer's disease and Grant must finally place her in an institution. He is dutiful in his caregiver role and respectful of her past beauty and affection. To his horror however, he watches Fiona establish a romantic bond with another demented patient, Aubrey, whose appearance, behavior, and education are nothing like Grant's. At first, Grant resents the threat, then he gradually accepts Fiona's need.

The situation is aggravated when Aubrey's wife, Marian, brings him home. She really does not want him there, but cannot otherwise keep her house. Fiona is miserable and begins to lose weight. Grant awkwardly tries to encourage Marian to send Aubrey back, or at least to allow regular visits. She is unwilling, but eventually she relents. However, Fiona improves anyway, her disease having rapidly eradicated the memory of Aubrey, while Grant and Marian are exchanging telephone messages about the possibility of a date.

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In September 1796, 32-year-old Mary Lamb (1764-1847), stabbed her mother to death with a carving knife during an incoherent frenzy. Almost immediately, she became calm and was sent to a madhouse, remaining away from home for months until her grieving and unforgiving father had died. Mary was released into the care of her much younger brother, Charles (1775-1834), soon to be known for his poetry and essays. She never went to prison, but would return to the madhouse many times over the next fifty years. As a result, this life is an interesting exploration of chronic mental disturbance in the early nineteenth century.

Neither Charles nor Mary ever married; they always lived together and professed to be each other's dearest friend. Obliged to eke out a middle class income--she (until her crime) at dressmaking, he in an office--they turned to writing, often together. The Lambs' famous Tales from Shakespear [sic] was written mostly by Mary, but their friend William Godwin under Charles's name as sole author first published it. Mary's other books, edifying texts for young female readers, were published anonymously.

Letters to their many friends reveal Mary's vexation with Charles's drinking and smoking and his concerns over her multiple relapses, which were triggered by being obliged to move house. Charles predeceased his older sister by ten years and she spent the rest of her life in chronic care of a private couple, visiting his grave almost every day.

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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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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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Written by a Jungian psychoanalyst about her own experience with metastatic breast cancer, this memoir is a two year chronicle extending from the day of diagnosis through sequential remissions and relapse, to the remission following stem cell transplant. In the course of this voyage, the author deals with her own fear and anger, the range of responses elicited from family and friends, and her anxiety about the technology and impersonality of the health care system.

The book ends, but Middlebrook's story does not. She is feeling well as she recovers from her transplant. She knows she still has a lethal tumor. The only thing she doesn't know is when it will claim her life.

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In Dirty Details, Marion Deutsche Cohen writes about the unrelenting labor entailed in caring for her husband Jeffrey at home as multiple sclerosis turns his symptoms from "mere inconveniences" (11) to extraordinary demands, which can disturb her sleep as frequently as twenty times a night.  The premise of her unsparing narrative is that "we have got to spill the dirty details" (26) of such arrangements before the endurance-draining responsibilities of home care such as hers can be understood and redressed.  In a culture that favors narratives of seemingly heroic individual effort, Cohen's brutally forthright descriptions of the effects of Jeff's needs on her life can be mistaken for a self-pitying complaint, rather than an urgent, revelatory, political call to action.  Like her husband, a well-published physicist at the University of Pennsylvania when diagnosed with MS at age 36 in 1977, Cohen is an accomplished professional.  With a PhD in mathematics, Cohen teaches college students as well as publishes poetry and prose.  She and her husband also shared, with increasing asymmetry, the parenting of their four children.                 

Cohen captures the wearying routine of her days in her narrative's echoing refrain, "nights, lifting, and toilet."   The nights refer to Cohen's dangerously disrupted sleep.  Her husband's respirator can sound every half hour or so, inciting her to worry "about the psychological effects of seldom being allowed to finish my dreams" (23).  (When she asks if the machine can be fixed, she's told that it's supposed to behave that way.  By implication, so is she, despite the toll on her well-being.)  Yet she daily rallies the strength to lift her husband on and off the toilet, a feat, among others, that sometimes defied the powers of several hospital nurses working together.   Toilet also means responding to Jeffrey's regular calls to her to drop what she's doing, run upstairs, and bring him a jar.  The jar at least relieves her from lifting.  She experiences only intermittent relief, however, from finding and keeping home health aides who are able to show up reliably and behave civilly during the few hours per day they can be funded.  What results from these tests of human stamina, Cohen tells us, is not "ordinary stress" that some optimistically believe can be managed by taking stress reduction workshops, but rather "dire straits."  "Calling dire straits stress," she corrects, "undermines well spouses and makes us feel alienated and confused about where we stand" (32). 

It's that standing in the broadest sense of the word that Cohen's book most searingly addresses.  While Dirty Details contains one woman's account of caring for a disabled husband at home, the book's wider purpose is to make the labor of family caregivers visible with all its strains, conflicts, messiness, failures, anger, and, at times, humor.   As the straights become increasingly dire, though, Cohen writes about what happens to love as she moves from sustaining tenderness, candor, and their physical intimacy to diminishing her compassion for Jeff and saving herself:  a "pure survival instinct" (87).   After sixteen years in his family's care, Jeff at first reluctantly enters Inglis House, a residence that provides as much independence as possible for those who cannot live independently, where he continues to write and publish.  Cohen's professional life, social life, and beloved parenting once again flourish.  The story she is freed to write (illustrated with photographs by Anna Moon taken with Jeff's consent) lead readers away from her particular circumstances toward a comprehensive interrogation of social and medical systems that operate by leaving the most chronically ill and disabled citizens in their families' care by default.   And leave the families in dire straits.

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This sonnet sequence, found in part III of the poetry collection, A Long Sound, opens with the narrator preparing to date her music teacher's son, a man she has had a crush on since age twelve. Now she is eighteen, "damaged goods" according to her mother, and about to embark on a date.

In the second sonnet, the narrator's date begins to ply her with alcohol, and by the third sonnet, she numbly acquiesces to his advances. Drunk and in a blackout by the fourth sonnet, she re-lives the emotional and physical pain of her recent abortion, an event her whole family "was in on."

In the fifth sonnet, she wakes in her date's immaculate Buick as he drives her home and asks imperiously if she "does this sort of thing often." The sixth sonnet is both touching and horrifying-she recalls that, in spite of the man's disdain, she was so hungry for love that she wished he would kiss her good night.

Returned to the house she "hated," she mourns the "sore night" of the abortion, a memory she cannot erase with alcohol and sex. In the final sonnet, the narrator--chided, belittled, and abused by both her mother and her date--experiences a moment of awful clarity. This is the beginning of her recovery, a revelation recognized in retrospect.

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Written by a psychiatrist and historian, American Melancholy: Constructions of Depression in the Twentieth Century looks at how culture, politics and, in particular, gender have played a role in the development of a diagnosis.  Hirshbein moves between several different worlds, showing how they intercalate and, indeed, are very much part of the same world: psychiatric nosology and cultural attitudes to the gendered expression of emotion and feelings, medication trials and magazine advice to women about how they should deal with the blues, the relations between treatment paradigms and how society views suffering.

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