Summary:

In 1977 Marion Cohen's physicist husband, Jeffrey, was diagnosed with multiple sclerosis. He was 36 years old. Cohen, a mathematician and poet and mother of four, became his chief caregiver. As her husband's illness progressed, the caregiving role became increasingly absorbing, demanding, all-encompassing. Eventually daytime attendants were hired but sometimes they didn't show up. This collection of 77 poems is a kind of journal, primarily from late 1989 through January, 1991, that chronicles Marion's ambivalent caregiving, despair, resignation, "temper tantrums," love, and compassion.

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In this novel, with the help of some friends, Gregor Samsa has survived his seeming death at the end of Kafka’s The Metamorphosis and joined a freak show in Vienna. A little man named Amadeus Hoffnung, who suffers from Werner’s syndrome (premature aging), runs this Chamber of Wonders. The human sized cockroach proves to be a big hit with the public and a good friend for his assorted colleagues, who come to admire his optimism, compassion, and sense of social responsibility. Gregor thrives, except for the festering wound in his carapace (back) that will not heal--the wound made when his father threw an apple at him during his traumatic early life in "Metamorphosis" as a human-turned-insect.

In 1923, as a result of an life-changing encounter with Ludwig Wittgenstein, and in the context of growing anti-Semitism in Central Europe, Gregor flies (literally) to New York, where he takes up residence and soon runs into Mr. Charles Ives, the composer and insurance executive, who gives him a job as an actuary. The novel describes Gregor’s subsequent adventures over the next 20 years--as a surprise witness at the Scopes trial, as the subject of Ives’s famous "Insect" Piano Sonata, and finally as the confidant of Franklin Delano Roosevelt and member of his "brain trust." Along the way, Gregor contributes greatly to the science of risk analysis and management.

In 1943, at the president’s request, Gregor joins the atomic bomb project in Los Alamos, New Mexico, where he serves as risk analyst and all-around moral questioner during the bomb’s development. Finally, Gregor Samsa, having survived 30 years as an insect, becomes physically ill as the old apple-infection turns to septicemia; and he becomes existentially ill, as he confronts the implications of nuclear warfare. He decides to commit suicide by placing himself among the instruments at Ground Zero of Trinity site, vaporizing in the explosion of the first atomic bomb; indeed, "Gregor’s was the most expensive assisted suicide in history." (p. 458)

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Aging, Jewish-Canadian gum-shoe, Benny Cooperman, awakes in hospital from a coma to discover that he has forgotten many things about himself and his recent past. He has also lost the ability to read, although he still can write: alexia sine agraphia. The therapists give him a memory book as an aide to functional recovery; he must record vital information for later deciphering. He learns that he was found unconscious in a dumpster with a blow to the head; beside him lay the corpse of a woman professor.

Leaving the hospital only once (without permission), Cooperman uses dogged determination and ingenuity to unravel the complex academic homicide. Adapting to his own disability proves just as demanding to Cooperman as solving the murder. Without giving away the ending, this "whodunit" involves premonitory dreams, pretty students, rogue professors, a crusty underworld, and drugs. Engel's trademark light touch and vignettes of Toronto and its University colleges and hospitals add humor and credibility to the vivid yarn.

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In dire financial straits, the physician-researcher, Dr. Malcolm Sayres (Robin Williams), accepts a clinical job for which he is decidedly unsuited: staff physician in a chronic-care hospital. His charges include the severely damaged, rigid, and inarticulate victims of an epidemic of encephalitis lethargica. Sayres makes a connection between their symptoms and Parkinson’s disease. With the hard-won blessing of his skeptical supervisor, he conducts a therapeutic trial using the new anti-Parkinson drug, L-Dopa.

The first patient to "awaken" is Leonard Lowe (Robert De Niro) who, despite being "away" for many years, proves to be a natural leader, with a philosophical mind of his own. Other patients soon display marked improvement and their stories are told in an aura of fund-raising celebration marked by happy excursions.

Gradually, however, problems develop: patients have trouble adapting to the radical changes in themselves and the world; Leonard grows angry with the imperfection of his rehabilitation; the horrifying side effects of L-Dopa appear; and Leonard’s mother (Ruth Nelson), initially happy for her son’s recovery, is later alienated by the concomitant arousal of his individuality, sexuality, and independence. The film ends with "closure of the therapeutic window" and marked regression in some patients, but not before they have awakened clinical commitment and a new ability to express feelings in their shy doctor.

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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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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 volume belongs in the category of cross-cultural studies of medicine and the humanities. Its main audience is scholars of nineteenth-century American psychiatry and culture. The author divides his study into six chapters, each with a topic, including the simultaneous emergence of nineteenth-century public debate about improving the treatment of insanity and the movement to abolish slavery; cultural activities in asylums directed toward humanizing the patients; bardolatry in British and American medical circles; discussions of Emerson, Hawthorne, Poe, and Melville in the context of their literary and personal relationship with madness; a chapter on captivity narratives and popular novels by former female and male patients; and an epilogue.

Unlike today, "In mid-nineteenth-century America, the condition of the mentally ill seemed to demand-and to a large degree received-national attention and the full creative energy of a group of dedicated reformers" (p. 2). Reformers linked the emancipation of slaves with curing the delusions of the insane. Slaves and the mentally ill had in common deprivation of their civil liberties; however, the difference was that white mental patients could be expected to grow up eventually, whereas black slaves would always remain children, and hence could not be trusted with the right to vote, own property, or sign contracts.Some causes of insanity were deemed to be the individual's reaction to the stress of modern life, too much freedom and choice, religious fervor, masturbation, or excessive study. In their aggressive attempts to remake patients into proper gentlemen and ladies, the new asylums promoted cultural activities such as reading selected texts, theater performances and writing.

Most asylums housed males and females in approximately equal numbers; cultural activities for females stressed piety, fashion, and domestic activity while men could comment on politics, the temperance movement, and opposition to women's rights. Reiss refers to the French model of using cultural activities in asylums, f.ex., Philippe Pinel's staging of plays to educate patients, and Marquis de Sade's theater performances at Charenton. He ends with a discussion of patient narratives that depict some horrific abuses tolerated in nineteenth-century asylums; the degree of these abuses is familiar to us from One Flew Over the Cuckoo's Nest (see film annotation).

The work includes a few illustrations, the most important being an engraving from a painting by Tony Robert-Fleury titled: Pinel Freeing the Insane (1876). (Yale University). Philippe Pinel (1745-1826) was a French pioneer in the humane treatment of mentally ill patients. A Director of Bicêtre Hospital in Paris, he is depicted as a heroic physician, liberating, mostly female, patients there. However, scholars have shown that only 10 of the 270 patients were chained, and that Pinel '"accepted the traditional use of chains to restrain the violent insane as a matter of course"' (p. 160). Reiss's point is that the revolutionary nature of Pinel's treatment of the insane has been exaggerated.

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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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Baiev’s chronicle of medical life in wartime is full of incident—tragic, touching, and repeatedly traumatic:  his own life was threatened repeatedly by Russians who suspected him and Chechens who resented him for treating Russians.  Members of his extended family were killed and his father’s home was destroyed.  He straddled other boundaries:  trained in Russia, he fully appreciated how modern medicine may bring relief not available even in the hands of the most respected traditional healers, but he mentions traditional ways with the reverence of a good son of devout Muslims.  His perspective is both thoughtfully nationalistic and international.

Finally coming to the States where he couldn’t at first practice the medicine he had honed to exceptional versatility under fire, he lives with a mix of gratitude for the privilege of safety and a longing for the people he served, whose suffering was his daily work for years that might for most of us have seemed nearly unlivable.  Before writing the book, he struggled with his own post-traumatic stress, and continues to testify to the futility of force as a way of settling disputes.  Medicine is his diplomacy as well as his gift to his own people, and the Hippocratic Oath a commitment that sustained him in the midst of ethical complexities unlike any one would be likely to face in peacetime practice.

 

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Set against the backdrop of the violent post-Duvalier years in Haiti, this novel traces the development of Sophie, the product of a violent rape. Having been raised lovingly by her aunt in a village near Port-au-Prince for 12 years, Sophie is suddenly sent for by her mother (who had immigrated to the United States as an asylum seeker). Living in New York, Sophie discovers that her mother is haunted by violent nightmares, a remnant of the trauma she had suffered before fleeing Haiti.

Part Two opens as Sophie, now 18, falls in love with her neighbor, a musician named Joseph. Her mother, upon finding out about Sophie's love interest, begins the humiliating tradition of her mother, "testing" Sophie's virginity by inserting a finger in her vagina to make sure the hymen was not broken. After several "tests," Sophie painfully breaks her own hymen with a pestle and immediately runs off with Joseph.

Part Three of the novel opens about a year later, when Sophie has left her husband and returns to Haiti with her baby daughter. Here, she begins learning about her mother's past as well as telling her aunt and grandmother about her own current sexual dysfunction and her bulimia. Sophie and her mother reunite and reconcile in Haiti and later return to the States where Sophie returns to Joseph and begins a kind of therapy that includes rituals from Haitian, African, and Chicana traditions.

Meanwhile, Sophie's mother becomes pregnant (by her long time lover and friend) and increasingly agitated, finally committing suicide. At the funeral, in Haiti, Sophie runs into the cane field where her mother had been raped some 20 years earlier. As she is screaming her grief and rage, she tears at the cane stalks. Rather than attempting to stop her, Sophie's aunt and grandmother watch her, finally asking, "are you free?" and then insisting, "You are free!" (p. 233)

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