Summary:

The author, a scholar of autobiography and other forms of life writing, has expanded his scholarship to include what he calls "autopathography"--autobiographical narratives of illness and disability. This book is the result of an extensive study of such narratives. The works discussed are full-length and recently published--most were published in the 1980s and 1990s. Couser is particularly interested in issues of narrative authority, in how autopathography can be counterdiscursive to the prevailing biomedical narrative, and, especially, in how autopathography is counterdiscursive to the cultural stigmatization and marginalization that often accompany illness or disability ["insofar as autobiography is the literary expression of the self-determined life" (182)].

Since social/cultural counterdiscourse is of particular importance to Couser, he has focused on four specific illnesses/disabilities that have been associated with stigma: breast cancer, AIDS, paralysis, and deafness (182). His analysis of each condition is diachronic because he is searching for "the enrichment of the genre by successive writers who defy, complicate, or refine its conventions" (44). In addition, Couser asks, to what extent do authors "integrate illness narrative into a larger life narrative?" (14). He considers who narrates illness stories (biographer or autobiographer), how the stories are constructed, whether and how they achieve a "comic plot" and narrative closure.

The book's introduction (chapter 1, "Human Conditions--Illness, Disability, and Life Writing") provides a framework, relating what will follow to current issues in life writing, "identity politics," the culture of medicine, and illness experience, as well as to other work on illness narratives such as Anne Hunsaker Hawkins's Reconstructing Illness: Studies in Pathography and Arthur Frank's The Wounded Storyteller (annotated in this database).

Chapter 2, "Medical Discourse and Subjectivity," develops further the questions of narrative authority, representation, and resistance to a dominant medical or cultural narrative. Each subsequent section--breast cancer, AIDS, paralysis, deafness--is prefaced by an informative discussion of the cultural and narrative issues that are relevant to the particular condition; the subsequent analyses of individual texts further elaborate these themes.

View full annotation

Summary:

This short documentary film was made by Angelo Volandes while he was a fourth year medical student at Yale, as part of his senior thesis. It describes the life of Ray, a 70 year old dermatology patient who has suffered from neurofibromatosis since he was a teenager. Severely disfigured by this condition, Ray has led a life of social ostracism, loneliness, physical discomfort, and stoic depression.

Angelo introduces the film, frankly describing his own "visceral reaction" when he first encountered Ray in clinic. Ray and his long-time physician, Dr. Braverman, alternately discuss how Ray’s condition has affected every aspect of his life. Although Ray has endured more than 30 operations to remove the tumors that become infected, itch, and plague him, it is social ostracism that has most powerfully altered his life.

The camera follows Ray as he shops in the supermarket while doctor and patient describe what an ordeal this can be. Worse than suffering the stares of fellow shoppers is being treated like a contagious carrier of the plague by the checkout clerk, who refused to handle Ray’s money. Ray tells how incidents like these have landed him in the Emergency Room numerous times, out of sheer emotional upset.

View full annotation

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.

View full annotation

Summary:

A woman, Frida Kahlo, looms in the foreground, central to the painting, facing the viewer fully frontal.  She is nude, except for a sheet that is wrapped around her foreshortened lower body, and the widely spaced straps of an upper-body corset.  The center of her upper body is vertically torn open from neck to pubic region to reveal an Ionic column that is split horizontally in numerous places.  The column pushes up against the figure's chin.  The expression on the woman's face is serious, stoic.  Tears trickle from her eyes and carpenter nails penetrate the skin of her face and the rest of her exposed body, as well as the sheet.  Her long dark hair hangs loosely behind her head, her left ear exposed. Behind the woman stretches a fractured greenish-brown earth, reaching to a strip of sea, which meets the dark blue sky.

View full annotation

Summary:

The country doctor, Monsieur Benassis, practices in a village called Voreppe at the base of the Grande Chartreuse Mountains. He is a seedy and unkempt, but very kind-hearted, bachelor of 50 who lives with his authoritarian housekeeper. Benassis was brought up in the country, but had lived for many years in Paris where he enjoyed a dissipated life and loved two women. He left the first, only to learn later that she bore him a son and died of heart disease. Later his illegitimate son died.

His second love, Evelina, broke off their engagement when her parents objected to the suitor’s sordid past. Benassis became very depressed and considered suicide. After visiting a monastery in the Grand Chartreuse region, he decided to move to Voreppe and devote his life to serving the poor rural people. He not only practices medicine, but over the years has also initiated a number of economic and community development projects in the area.

Above the village is a hamlet that contains a dozen cretins among the thirty families who live there. Cretinism is common in the region. Dr. Benassis decides that it would be good for the public health to have all the cretins sent to an asylum in Aiguebelle, some distance away. When Benassis becomes mayor, he arranges to have the cretins transported to Aiguebelle, despite opposition from the local people. One cretin remains "to be fed and cared for as the adopted child of the commune."

Benassis later moves the other inhabitants of the hamlet to a new, more fertile, site in the valley and installs an irrigation system for them. At the end of the novel, Benassis has a stroke and dies. He is the first to be buried in the new cemetery.

View full annotation

Summary:

The twin of the title is Helmer van Wonderen. He is a 54 year old dairy farmer in Noord-Holland, the northwest peninsula of the Netherlands and the year is 2002, 35 years after his only sibling, his twin brother Henk, died. Henk was the front seat passenger of a car driven by Henk's fiancée, Riet, when the car plunged into lake Ijssel. Riet lived; Henk drowned. Helmer's life immediately changed from that of a 19 year old university student in Dutch linguistics to a farmer and successor to their father, a tyrannical and distinctly unlovable man. Henk had been the father's clear favorite, if we accept Helmer's and the narrator's viewpoints. Helmer stays a bachelor and maintains the farm into the present, the time of the novel. His father is elderly and confined to the upstairs. Helmer treats him with disdain; he feeds and bathes him with barely disguised contempt awaiting his death with a vague sense of hope, symbolized by Helmer's re-organizing and painting the interior of their house at the beginning of the book.

Abruptly Riet, a recently widowed mother of three, re-enters the van Wonderen world with a letter requesting Helmer to allow her youngest child, an 18 year old son, also named Henk, to live with Helmer as a farmhand. Riet wants her son Henk to learn farming and discipline and receive the parental (read "fatherly") direction she feels he needs and she cannot supply. Helmer consents. Henk comes to live with him, working desultorily as a hired hand.

Riet and Helmer become estranged over the latter's lying to her that his father was dead when in fact he was upstairs at the time of her only visit to their home since her fiancé's death. One day Henk saves Helmer's life when the latter becomes pinned by a sheep in a ditch. Henk leaves soon thereafter; the father dies; and a Frisian farmhand from Helmer's youth re-appears at the time of the father's funeral. He and Helmer take off, after Helmer sells the farm, to Denmark, a much vaunted Shangri-La for Dutch farmers in this novel.

View full annotation

Summary:

In the foreground, staring directly at the viewer, white tears visible on her cheeks, the artist lies immobile in a four poster hospital bed, only her head visible above the white sheet covering that is decorated with pale, pastel circles of cells or microscopic organisms.  The towering wooden oak easel that held her canvases, allowing Frida to paint when ill, is now the structure supporting a funnel of physical and emotional preoccupations erupting as vomit from her mouth: fish heads, dead chicken carcasses and fowl entrails, and skull inscribed with her name.  The background is a barren, parched and cracked desert.  The solitary objects in the sky, a moon and red-orange rimmed sun, suggest being trapped eternally, day and night, in this state, "Without Hope" --the painting's title. On the back of the painting Kahlo wrote, "Not the least hope remains to me....Everything moves in tune with what the belly contains."  [Hayden Herrera. Frida Kahlo: The Paintings (New York: HarperPerennial) 2002, p. 187]

View full annotation

Summary:

Shay, a psychiatrist who specializes in post-traumatic stress disorder (PTSD), juxtaposes the narrated memories of his patients who are Vietnam veterans to the story of Achilles in Homer's Iliad. He finds that the roots of their illness, like that of the ancient hero, lie in betrayal of duty by senior officers who failed to do "what's right," in the repression of grief, and in the social limitations imposed on expressions of love between men.

These stressors lead to guilt, wrongful substitution, and dangerous rage, called the "berserk" state. The mental pathology is fostered by an equally wrongful failure to honor the enemy; return to "normal" is never possible. The book concludes medically with recommendations for prevention.

View full annotation

Summary:

In this study of a small group of children followed by an HIV clinic at an unidentified institution, the author describes in detail her experience with the children, their caregivers--sometimes biological family members, sometimes foster providers--and the medical staff responsible for the management of their viral infection. The writer, a humanities professor at a medical school, acknowledges the privilege she felt at having been in a position to develop a close personal contact over several years with the people about whom she writes.

The frame of the study is case-oriented. Each child is described and the medical and social histories of a total of nine are outlined and then fleshed out with personal interviews and home visits made by the writer. In addition to the histories, Hawkins includes a glossary of contemporary medical terms and common acronyms relevant to HIV, a bibliography, and a list of resources for those interested in looking further into this infection as it presents in children.

View full annotation

Summary:

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.

View full annotation