Summary:

Lucy Grealy, poet, tells the story of her childhood and young adulthood, a twenty year period of overwhelming physical and mental suffering. Yet the author is so resilient, so intelligent, so insightful, and such a good writer that her story transcends mere illness narrative. At age nine, first misdiagnosed and finally identified as having facial bone cancer (Ewing’s sarcoma), Lucy underwent several surgeries and more than two years of intensive chemotherapy and radiation treatments. Pain and nausea, anxiety and fear of more pain and nausea were only part of the ordeal.

The young Lucy became aware of what it is to be severely, chronically ill. Her sisters behaved differently toward her: they were polite. "Suddenly I understood the term visiting. I was in one place, they were in another, and they were only pausing." Even her father felt uncomfortable at her hospital bedside, and Lucy was relieved that he came infrequently.

But being at home was worse: in the hospital the other patients and the staff expected little from her and she felt no guilt or shame; amidst her family, she blamed herself for the tension, arguments over money, and her mother’s depression, even though these elements had existed prior to her illness. Her hair fell out and she became dimly aware that people were staring at her face. Nevertheless, "I . . . was naturally adept at protecting myself from the hurt of their insults and felt a vague superiority . . . . "

Well enough to return to school, Lucy’s disfigured face drew taunts from classmates; she understood finally that she was perceived as ugly and that she would not be loved. Only on Halloween, when she could mask her face, did she feel free and joyful, unconcerned about her appearance, "normal." Her moods now alternated between despair, determination, and escapism. She became convinced that only facial reconstruction and a restored appearance would make life bearable.

During years of reconstructive surgery Lucy evolved complex rationalizations to give meaning to her suffering. Two anchors had stabilized her existence throughout the misery: a passionate adolescent love of horses, and an adult love of poetry. Eventually outward appearance and inner life became harmonious. "The journey back to my face was a long one."

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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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Summary:

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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Summary:

Oswald Alving has returned home to visit his mother on one of the occasional visits he has made since leaving home as a young boy. He was sent away to prevent him from becoming morally contaminated by his father, Captain Alving, who subsequently died of syphilis. This time, however, he intends to stay and marry the maid, Regine; he is unaware that Regine is his half-sister, sired by the profligate Captain Alving.

Parson Manders, the mother's former lover, also visits and reprimands Mrs. Alving for not living a more conventional life and rearing her son. In the play's climax, Oswald reveals that he, too, is suffering from syphilis and will inevitably develop dementia. To make up for the past and to prove her love, Oswald asks his mother to give him a fatal dose of morphine when signs of dementia appear. At the end of the play it is not clear what she will do.

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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.

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Summary:

The French writer Alphonse Daudet (1840-1897) developed the form of tertiary syphilis called tabes dorsalis in the early 1880’s. Tabes progressively destroys the structures of the dorsal column of the spinal cord, leading at first to lower extremity ataxia and neuropathic pain, and eventually to paralysis of the legs associated with intractable pain. Daudet sought treatment from the leading neurologists of his time, including J. M. Charcot and C. E. Brown-Séquard, but the disease progressed relentlessly.

At some point Daudet began making notes for a book about his illness. He spoke to several of his contemporaries about this project, but the book never became more than a collection of brief notes, which were collected and published posthumously as "La Doulou" (Provencal for "pain"). This short book, translated here by Julian Barnes, consists of "fifty or so pages of notes on his symptoms and sufferings, his fears and reflections, and on the strange social life of patients at shower-bath and spa." (p. xiii)

The notes are generally in chronological order, beginning with short comments like "Torture walking back from the baths via the Champs-Elysées" (p. 4) and "Also from that time onwards pins and needles in the feet, burning feelings, hypersensitivity." (p. 6) In a long section toward the end Daudet comments on his experience at Lamalou, a thermal spa that he visited annually from 1885 to 1893. "I’ve passed the stage where illness brings any advantage or helps you understand things; also the stage where it sours your life, puts a harshness in your voice, makes every cogwheel shriek." (p. 65)

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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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Summary:

A woman's profile occupies the foreground of this computer-generated image. She is depicted from the base of her neck up to near the top of her head. A blue device protrudes from her neck, and a small section of a ridged tube, presumably connected to the blue device, occupies the bottom right-hand corner of the image. The device is a tracheal breathing tube, shown in the online photograph of the artist that accompanies the image. Worsham suffers from amyotrophic lateral sclerosis (ALS), better known as Lou Gehrig's disease.

The lady in the artwork wears a polka dot blouse and a vibrantly patterned hat. Her eyes look directly forward, as though oblivious to the onlookers in the image's background, and her mouth hangs agape. She wears lipstick, eye shadow, and rouge.

A young boy's face with big eyes, rosy cheeks, and brown hair looks impudently at the woman from the lower right half of the image; his mouth holds a slightly upturned grin. Behind the boy and occupying the background stands a woman whose green eyes stare at the disabled lady's profile. The staring lady has long light brown hair and she wears lipstick, makeup, a purple kerchief, and a green dress. Partially separating the boy and the woman from the disabled lady is a thin band of blue background - presumably sky - that cuts down through the center, albeit the background, of the image.

A dull green border of blocks frames the scene. Each corner is decorated with a red heart, the points of which angle into the center of the image. Big block letters inscribe the artwork's title: the top of the frame reads "HEAD," the bottom reads "TURNER."

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Summary:

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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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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