Summary:

This is an autobiographical novel in which the author relates the emotional life of a childhood and young manhood lived with cerebral palsy. The disease is never named (except on the fly-leaf of the book cover); its impact is revealed through incidents and personal relationships experienced by the protagonist in a narration which reflects by its style, the intellectual maturation from childhood to adulthood.

As a child, Felix spends long periods in a children’s home, to receive therapy and educational training, and to relieve his family of the strain of his care. Felix learns to walk with painstaking effort and surges of determination, but the reactions of others, even of his mother, make clear that he is not normal. His social life is complicated by anti-semitism and by just being from a different religious background. With puberty comes sexual longing and the need for female affection, and eventually the painful recognition that his desire will not be reciprocated. What saves Felix is the life of the mind and a love of literature and writing which a few influential mentors and a clever, similarly disabled friend help him to develop.

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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 narrator is an alcoholic who has signed himself into a "drying-out facility." He has been there before and tries to reassure his companion, J.P., that their unpleasant withdrawal symptoms will improve. J.P. likes to talk and the narrator encourages him to do so because he would rather listen to J.P.'s stories than think about his own predicament. After hearing about J.P.'s marriage--infatuation, love, children, drinking, fighting ("who knows why we do what we do?")--the narrator is able to tell his own story.

His story includes a wife with whom he was once happy but from whom he is now estranged, and a girlfriend who has received a cancer diagnosis. Each woman had brought him to the drying-out facility, at each separate occasion. "Part of me wanted help. But there was another part." The narrator's ambivalence extends to his relationship with these two women. He can't face his girlfriend's illness or her son, and he knows that if he calls his wife she will ask him "where I'm calling from" and he will have to explain.

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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 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.

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Vicki Forman's twins, Evan and Ellie, were born in 2000 at twenty-three weeks' gestation.  Fetuses could legally be aborted up to twenty-four weeks, but rules regulating treatment of extremely premature babies differed from one hospital to another.  Daughter of a doctor, Forman knew how slim were the chances of survival and how great the chances of serious disability if either of the twins did survive.  Grieving, but realistic, she and her husband asked for a DNR order, but learned that such orders did not strictly apply to the situation of children like their twins.  Instead, the line between  the parents' authority and the doctors' remained blurry and decision-making vexed not only by technical and emotional complications, but by conflicting legal guidelines as they made their way through many months of hospitalization and home treatment of their surviving son.

Ellie, the daughter, died at four days.  Evan lived for eight years with disabilities that completely reorganized family life, and required constant monitoring, management of equipment, and careful orchestration of parental relationship to their older child, Josie, and their special-needs child.  Much of the narrative covers the period of hospitalization during Evan's early months and the negotiations between parents, physicians, and other caregivers.  It also touches on Forman's own emotional responses to the strenuous learning curve required of a parent who suddenly finds herself with a special-needs child.

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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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Bomgard, a young doctor recently transferred from a rural area to a small town hospital, receives an urgent message from Polyakov, the doctor who replaced him. Polyakov has become ill; he needs medical help. Before Bomgard can respond, however, Polyakov arrives at the hospital, dying of a self-inflicted wound. In his last moments, he gives Bomgard a notebook, on which is recorded the story of Polyakov's addiction to morphine.

Polyakov first took morphine to relieve an abdominal pain. He found that it also relieved his despair over the loss of his lover, an opera singer in Moscow. Morphine relieved his loneliness and improved his work. He gradually increased the dose until he became hopelessly dependent on the substance. He failed in his attempts to break the habit at a clinic in Moscow. Eventually there is nothing in life but the drug and Polyakov suicides.

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A poem in nine parts telling of the poet's life engagement with melancholy. She encounters melancholy first as an infant, when it hides "behind a pile of linen" in her nursery. She passes through a life's worth of bottles of anti-depressant medication. The moment she sees that she is "a speck of light in the great / river of light," melancholy alights on her "like a crow who smells hot blood" and pulls her "out / of the glowing stream." Then she discovers monoamine oxidase inhibitors. "High on Nardil," she finds beauty in the world and is "overcome / by ordinary contentment."

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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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