Summary:

In this superbly written essay, Nancy Mairs, a feminist writer who has multiple sclerosis, defines the terms in which she will interact with the world. She will name herself--a cripple--and not be named by others. She will choose a word that represents her reality, and if it makes people "wince," "[p]erhaps I want them to wince. I want them to see me as a tough customer, one to whom the fates/gods/viruses have not been kind, but who can face the brutal truth of her existence squarely. As a cripple, I swagger" (9). She muses on the euphemisms that are used by others, concluding that they describe no one because "[s]ociety is no readier to accept crippledness than to accept death, war, sex, sweat, or wrinkles."

Mairs describes the uncertainty of a (correct) diagnosis early on, the kind of person she was before, and how that has changed and not changed since her illness. She discusses her need for assistance, but balances that by saying that there are many people around her willing to help; she describes her dependence on her family and how lucky she was to have a husband and children before she was taken ill. Nevertheless, there "always is the terror that people are kind to me only because I'm a cripple" (15).

Mairs has many astute comments to make about how disability does not fit well in our youth-oriented, physical-fitness-obsessed culture, and on how social expectations influence whether she adapts or fails to adapt. She also understands what is at stake for the medical professionals who care for her: "I may be frustrated, maddened, depressed by the incurability of my disease, but I am not diminished by it, and they are" (20).

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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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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.

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Contrary to what the title might suggest, this is not a memoir of drug addiction. Writer and poet Tom Andrews has hemophilia, and codeine is the analgesic he requires during excruciatingly painful internal bleeding episodes. In this diary, begun while recovering from a leg injury, Andrews reflects on his particular experience of life and hemophilia. He makes clear that " . . . hemophilia is only one of the stories my life tells me . . . " (p. 29)

The memoir interweaves the author's physical, emotional, and existential journey through the convalescent period with flashbacks of childhood and his relationship with his ailing brother, now dead, to whose memory the book is dedicated. Brother John's fatal illness with kidney disease shaped--and continues to shape--Tom's life as much as did the hemophilia.

On the one hand their parents' concern for John took Tom out of the spotlight and allowed him to pursue his own interests. These extended to motorcycle racing, playing in a punk band, and setting a record for continuous hand clapping--at age 11--that was recorded in the Guinness Book of World Records. On the other hand, Tom's guilt over surviving John's early death may account for an almost reckless disregard of his own precarious physical condition. A constant subtext is the deep grief and abiding love of the living brother for the dead one.

But this is not a mournful book. It is an engaging memoir that provides unusual access and insight into the world of hemophilia, especially with regard to the painful "bleeds." It is the sense of exile and separation from others that is most disturbing for Andrews when in the throes of unrelieved pain. He takes us through the mental concentration required to endure this pain and the liberating relief to mind and spirit provided by codeine. Memory, perception, and writing provide the additional resources he needs to re-connect with the world.

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This anthology culls 1,500 excerpts from approximately 600 works of literature primarily written in the past two centuries and representing all major genres--the novel, drama, poetry, and essay. These brief selections highlight how literature portrays the medical profession and also provide ample evidence of many recurrent themes about the doctor-patient relationship and the personal lives of physicians present in the pages of fiction.

The book is organized into eleven chapters devoted to the following subjects: the doctor's fee, time, bedside manner, the medical history and physical examination, communication and truth, treatment, detachment, resentment of the medical profession, hospital rounds, social status, and the doctor in court. Many well-known authors including Anton P. Chekhov, Sir Arthur Conan Doyle, Ernest Hemingway, Thomas Mann, W. (William) Somerset Maugham, Leo Tolstoy, Tennessee Williams, and William Carlos Williams are featured in this anthology but less notable writers are also introduced. A twenty-three-page bibliography of primary and secondary sources is a useful element of the book.

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The narrator is confined to her bedroom in a summer house as part of the rest cure for her "nervousness." A nursemaid takes care of the baby. Her husband John is a physician who insists that she remain completely inactive, not even picking up a pen to write.

The bedroom was formerly a nursery. It has ugly yellow wallpaper with a recurring pattern that begins to obsess the narrator. Given her loneliness and lack of emotional support, she begins to see a woman confined in the pattern of the "repellent, almost revolting" wallpaper. Eventually she decompensates and has a complete emotional breakdown.

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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.

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Marriage à la Mode is a set of six paintings which were subsequently made into engravings. The series depicts the dissolution of a marriage conceived of greed and vanity. This fictional, arranged marriage between a Viscount and a rich merchant’s daughter is doomed to end in tragedy. "The Visit to the Quack Doctor" (also called "The Inspection") is the third in the series.

By this point, the husband has contracted a venereal disease and he and his diminutive mistress are visiting a quack doctor and female accomplice. This bold, angry assistant commands the center of the picture--she bears the tattoo of a criminal on her breast, holds a jackknife and is clothed in a wide black dress with a red and gold fringed apron. The toothless, bowlegged, leering doctor is colored in browns like the background of the picture.

The Viscount is seated, has a plaster on his neck, and extends a box with three black pills towards the doctor. His grinning expression is one of foolish pleasure. The mistress, who barely reaches the height of the seated Viscount, is the only sad figure and object of pity. Surrounding these figures are numerous icons of death, such as skulls, skeletons, anatomical dissections, and a torture machine complete with French instruction book.

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Robin Carr, a Torontonian in her mid-twenties, has serious inflammatory bowel disease, which by the end of the book has lead to twelve abdominal operations. The story begins as she anticipates further surgery to close her ostomy and create a pelvic pouch. Failure of the surgical procedure seems to bring about failure of her marriage. She is reminded of her father's own experience with an ostomy and his death of bowel cancer, as she establishes new relationships and grapples with her mortality and the possibility that she may never be able to have children.

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Summary:

In 1917, the poet Siegfried Sassoon protests the war in a London newspaper. He is saved from court martial by a military friend who argues successfully for his transfer to the Craiglockhart War Hospital where he comes under the care of psychiatrist, William Rivers. Sassoon is not sick, but he and his doctor both know that the line between sanity and insanity is blurred, especially for a homosexual and in a time of war.

The other patients, however, are gravely wounded in spirit if not body; sometimes they are tormented by uncomprehending parents and wives. Rivers’ efforts to unravel their nightmares, revulsions, mutism, stammering, paralysis, and anorexia begin to shake his own psychic strength and lead him to doubt the rationality--if not the possibility--of restoring them to service. He yearns for his pre-war research in nerve regeneration, the quixotic enterprise that serves as a metaphor for his clinical work.

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