Summary:

James Lang was diagnosed with Crohn's disease in 1996, when he was twenty-six years old. Five years later, however, a particularly severe bout with Crohn's, including a hospital stay, dramatically changed his relationship to the disease. Lang's memoir explores his ongoing relationship to Crohn's disease, both in the context of medical reassessments and diagnostic adjustments and in relation to his personal and professional development in his first year as a tenure-track professor of college English.

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The author, who writes and teaches nonfiction writing, began research on the lawsuit that forms the fascinating subject of this book in February, 1986. While the book focuses on Jan Schlichtman, the lawyer for the plaintiffs, and on his strategy in the case, there is much here that is relevant for health care professionals.

The lawsuit, which lasted nine years, concerned the tragic consequences of exposure to toxic waste: deaths from childhood leukemia; skin rashes, nausea, burning eyes, and other ailments. It was brought by eight families who lived in Woburn, Massachusetts against two companies, W. R. Grace and Beatrice Foods. The lawsuit claimed that these companies were liable for illnesses and deaths attributable to trichloroethylene (TCE) contamination of the water supply.

The story of how the families and the lawyers pieced together the fragments of the puzzle to determine cause and effect is gripping. One gains an appreciation for environmental epidemiology and the difficulty of reaching conclusions when only a small number of individuals are affected. Medical experts, public health specialists, geologists, civil engineers, government agencies, and the intelligence and driving motivation of the affected families and their lawyers were all necessary to establish the credibility of the claim.

In the end, however, the financial power and stonewalling of the companies, and the partiality of the presiding judge for one of the defense lawyers resulted in a verdict that favored the defense. Jan Schlichtman, the plaintiff's lawyer, was forced to declare bankruptcy.

Only when the Environmental Protection Agency (EPA) decided to launch a clean-up and filed suit against W. R. Grace and Beatrice Foods to pay a share of the cost, was any semblance of justice obtained. The EPA project will take 50 years, and even so, "all parties agree that it will prove impossible to rid the site of TCE and perc [tetrachloroethylene] completely . . . . " (Afterword; p. 494) Nevertheless, most of the families have not moved.

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This story follows John and Aileen Crowley and their three children, the two youngest of whom have a rare "untreatable" genetic disease. Pompe disease gradually degenerates muscle until patients cannot breathe or sit up; it also dangerously enlarges the heart. Determined to try to save his children, John Crowley started up a biotech company to develop an enzyme that would replace the non-functioninging one in his children. Others researchers in other companies were trying different approaches. Everyone made mistakes and created problems along the way.

Finally, in "the mother of all experiments," the four promising drug developments were tested against each other in a double-blind trial. After five years of development, the "special medicine" was finally given to the Crowley children. Daughter Megan, a real fighter and outgoing personality, won over the hearts of the researchers. Interesting conflict of interest issues increase the tension in this race for a cure.

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This play was suggested by the book, Bad Blood: The Tuskegee Syphilis Experiment, by James H. Jones, and by a number of primary sources. It brings to the stage in a fictional way the story of the interaction between an African-American public health nurse assigned to the Tuskegee Syphilis Study and four of the African-American participants in the study. Two physicians, one who is head of the Tuskegee Memorial Hospital, and one from the U.S. Public Health Service, are less important characters, but provide the evidence of the government's complicity in the study.

The physical setting of the play is the Possom Hollow Schoolhouse, and there are changing "testimony areas" where a 1972 Senate subcommittee investigation of the Tuskegee study is taking place. The theatrical setting is, however, the conscience and memory of Eunice Evers, the nurse, as she is pulled into and out of the action to give testimony to the audience.

Act One takes place in 1932, and allows the audience to become acquainted with the four African-American men who, along with several hundred others, become part of the study after their blood has been found to test positive for syphilis. The treatment of the infected men with mercury and arsenic comes to an end after six months because of a lack of funds, and a decision is made by the Public Health Service to continue a study of untreated syphilis in these men. A fifty-dollar life insurance policy is given to each man as an inducement to remain in the study.

Act Two carries the lives of the characters through the introduction of Penicillin as treatment for syphilis in 1946--a treatment from which the Tuskegee study patients were excluded--and on to 1972, when the Senate committee hearings were held. The Epilogue is about the big guilts of the government and the little guilts experienced by Miss Evers as she questions her nursing ideals.

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A son’s story of his father’s illness, treatment, and resultant destruction by the "psychic-driving" experiments of Dr. Ewen Cameron at Montreal’s Allan Memorial Institute in the 1950’s. The effect of the father’s illness on the family is recounted, as is the son’s gradual realization, only when he is himself about to become a psychiatrist, that something abnormal must have taken place during those long hospitalizations. Weinstein tells other patient stories in some detail as he recounts the legal fight for compensation awarded finally in October, 1988.

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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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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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The aged, black nurse, Eunice Evers (Alfre Woodward), testifies before the 1973 Senate hearings into the Tuskegee study. Through a series of lengthy flashbacks, her testimony evokes the 1932 origin and four-decade course of a research experiment to study but not treat syphilis in the black men of Macon County, Alabama. The federally funded project began with the intent to treat the men, but when funds dried up, the project coordinators decided simply to document the course of the disease to discover if blacks responded to syphilis as did whites.

The nurse was deeply attached to the patients and they, to her; a Dixie band named itself "Miss Evers' Boys." Evers and her doctor supervisor (Joe Morton) hoped that treatment would be restored after a few months, but ten years pass. With the advent of penicillin in 1942, her intelligent lover Caleb (Laurence Fishburne) rebelled, took penicillin, and enlisted in the army; the project, however, continues.

Evers is disbelieving when she realizes that the men will not be treated, but she cannot abandon them. Against the advice of her father, she refuses to leave Alabama with Caleb and continues to participate in the lie that encourages the Tuskegee men to remain untreated into the late 1960s. One by one Miss Evers' Boys die or are disabled by the disease.

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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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