Summary:

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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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 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 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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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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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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Louis Drax is a nine-year-old boy living in France with his stay at home mother and Air France pilot father. Such an apparently normal family description is the merest tissue of appearances. The father is probably an alcoholic and unfaithful; the son is "accident-prone" (a nearly fatal episode of SIDS at two weeks of age, a near fatal electrocution at age 6 after falling on the tracks of the métro in Lyon; salmonella, tetanus, botulism, meningitis, etc. [or, as Louis is fond of saying, "blah, blah, blah."]) and the mother has issues that only emerge as one becomes more deeply involved in what is a mystery story.

Like Gabriel Garcia Marquez’s A Chronicle of a Death Foretold, or Janet Lewis’s superb The Trial of Søren Qvist, one knows the ending early on (page 16 in Louis Drax), but not the details. The why and the how are the stuff of the novelist’s art in all three books.

With premonition of more danger, Louis goes on a family picnic (see below for the author’s biographical basis for this tale) and winds up at the bottom of a ravine, dead. Drowned and dead. A few hours later, in the morgue, he is found to be alive. Comatose and in a persistent vegetative state but alive. He is therefore transferred to the care of a neurologist specializing in comatose patients at the Clinique de l’Horizon (formerly l’Hôpital des Incurables).

It is here that the mystery unfolds. The questions are: How did Louis end up at the bottom of the ravine? Did his father, now missing, push him as his distraught mother alleges? What role does the clearly neurotic mother play in this tragedy? And who exactly is Louis Drax? Lastly, how do the mysterious letters allegedly from him, written while still in a coma, come to be?

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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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One of Steinbeck's earliest published works, The Pastures of Heaven is a collection of stories about the inhabitants of a fertile valley in California, beginning with the Spanish corporal who first stumbles across the "long valley floored with green pasturage on which a herd of deer browsed" and concluding with the families living there during the first stages of the great depression.  Most of the stories take place in 1928-1929, although many are rooted in flashbacks and narratives that span the generations before.  

The novel consists of short stories that describe particular times and places within the valley, and collectively form multiple different perspectives on life there; they are linked by the valley but also by the relationships between the families, and in particular, the Munroes, whose pleasant, mild appearance in almost every story heralds disaster.

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Lance Clayton (Robin Williams) is an unsuccessful writer, receiving only a slew of rejections with every new novel he sends out.  He teaches poetry to a small class of uninspired students (who try to use song lyrics they think he won't recognise in place of their own homework), and the principal is threatening to end the class.  In addition, he is in a relationship with the art teacher (Alexie Gilmore) who has also caught the eye of a charismatic young writer and fellow teacher (Henry Simmons) who just published his first story in the New Yorker.  Most disconcerting of all, his son (Daryl Sabara) is an unpopular, crude, lascivious teenager who seems to take little pleasure in being rude and mean to other people, but less pleasure in anything else.  Except, perhaps, masturbation and auto-erotic asphyxiation.

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