Summary:

Before Jamie Weisman went to medical school and became a physician she wanted to be a writer. As she struggled to make a career out of writing, she was forced to acknowledge that the obscure, life-threatening condition that had plagued her since adolescence could not be factored out of her plans. Writers don't have easy access to affordable health insurance and her monthly intravenous infusions of antibodies and interferon were very expensive. Yet they were essential to fend off infection, for she had an immune system malfunction.

Of course, finances were not the only reason that Weisman decided to go into medicine. As is often the case, her own experience of illness was an important motivating factor, as was the fact that her father, of whom she is very fond, was a physician. This memoir describes significant stages of Weisman's illness, her interaction with the physicians she consulted, and the issues she grapples with as she pursues her life as a physician, wife, and mother (she graduated from Emory University's school of medicine in 1998 and practices dermatology).

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This great literate novel is the tale of Hans Castorp, the "delicate child of life" whom we first meet at age 23, ambivalently embarking on a career as a ship-building engineer in his home city of Hamburg, Germany. Before beginning his professional work, however, he journeys on what is intended to be a vacation and a pro forma visit to see his tubercular cousin, Joachim Ziemssen, at a sanatorium in the mountain town of Davos, Switzerland. Yet as the train pursues its course through the alpine scenery, Hans and the reader become aware that this is no ordinary journey. The impressionable Hans is transported away from the life and obligations he has known, to the rarefied mountain environment and insular community of the sanatorium.

At first uneasy, he soon becomes fascinated with and drawn to the routine established for the "consumptives" and to the social scene which flourishes there. Ordinary life seems increasingly unreal to him; his perceptions are heightened and he becomes aware of his physical, spiritual, and emotional vulnerability, as well as of his own sexuality. He is greatly attracted to one of the patients, a married woman of Slavic background, Madame Clavdia Chauchat. She reminds him of a schoolboy to whom he had been strangely drawn as a child. The turmoil brought on by this romantic obsession seems even to be reflected in his physical state, which is unstable and feverish.

As his intended stay of three weeks nears its close, the director of the sanatorium advises Hans to stay on to recuperate from a heavy cold, which appears to reveal an underlying case of tuberculosis. Hans is almost relieved at this news, for it provides him with a reason for remaining near Madame Chauchat as well as the opportunity to continue intriguing, profound discussions and cogitation about illness, life, time, death, religion and world view initiated by another patient, Herr Settembrini.

Settembrini is an Italian man of letters and humanist who believes that reason and the intellect must and will prevail, in daily life as well as in world affairs. He is contemptuous of the foolish flirtations and empty talk in which most of the sanatorium inhabitants indulge, and warns Hans repeatedly of the dangers inherent in cutting off all ties to real life and responsibility.

Nevertheless, Hans remains at the sanatorium for seven years, freeing himself from the constraints and conventions of life "in the flatlands" and instead engaging in a prolonged "questioning of the universe." This questioning includes a critical flirtation with death, stunningly described in the chapter, "Snow." Hans does not return home until the outbreak of World War I, in which he fights and survives.

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This thought-provoking book is a collection of readings which the editors have found to be particularly useful for a course they teach, "What’s Normal?" It is their intent to facilitate consideration of how the world is experienced by those who are socially marginalized because of their physical appearance. The title of the anthology derives from an article written by the literary critic, Leslie Fiedler, and reproduced as the lead-off essay. Fiedler argues that the propensity of cultures throughout history to define the normal and to make political decisions about physical "abnormality" has reached a point where the rich will perpetuate the cult of normalcy (by paying for medical treatments that ensure it) while "the poor . . . will be our sole remaining Freaks."

The anthology is divided into several sections: Part I contains nonfiction articles, essays, and excerpts from books. Part II reproduces fiction, poetry, and drama and is further subdivided into "Abnormal Weight and Eating Disorders"; "Abnormal Height-Dwarfism"; and "Deformity and Disability." Many of the pieces have been annotated individually for this database (e.g. Fat by Raymond Carver, annotated by Carol Donley and also by Felice Aull and Irene Chen; Skanks by Rennie Sparks; The Fat Girl by Andre Dubus; Weight Bearing by Patricia Goedicke; Dwarf House by Ann Beattie; The Song the Dwarf Sings by Rainer Maria Rilke; The Dwarf by Ray Bradbury; The President by Donald Barthelme; The Birthmark by Nathaniel Hawthorne; The Elephant Man by Bernard Pomerance and others).

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Editor Helman is a physician and anthropologist as well as a published author of short stories, essays, and a medical anthropology textbook. For this anthology he has selected short stories, case studies, memoir and novel excerpts whose purpose is "to illustrate different aspects of [the] singular but universal relationship" between doctors and patients (1). In the introduction he discusses how these selections illustrate storytelling in medicine; the unique experience of individual illness; differences between fast-paced contemporary technological specialized medicine, and an older more leisurely medicine where the physician employed all his/her senses to diagnose illness, doctors made house calls, and patients recovered over time, or died.

The anthology is subdivided into three parts: "Doctors," represented by the work of Mikhail Bulgakov, Franz Kafka, Sir Arthur Conan Doyle, and Rachel Naomi Remen; "Patients," represented by authors Renate Rubenstein, Ruth Picardie, Rachel Clark, Clive Sinclair, W. (William) Somerset Maugham, and O. Henry; and "Clinical Encounters," with work by Oliver Sacks, Cecil Helman, William Carlos Williams, A. J. (Archibald Joseph) Cronin, Anton P.Chekhov, and Moacyr Scliar. (In total there are 16 selections.) Each piece is preceded by a paragraph of biographical information about its author and an introduction to the text.

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In short, episodic chapters that move unpredictably and unchronologically through the years between 1956 and 2003, Nick Flynn tells us about his father, Jonathan Flynn--a man of many trades, a writer, an alcoholic with a prison record, a homeless person--and of his own life, which sporadically interweaves with Jonathan's. When Nick was six months old, his 20-year-old mother left Nick's father and made a meager life for herself and her two young sons. A string of her live-in boyfriends and one more failed marriage wound their way through Nick's young life, which was in the seaside town of Scituate, Massachusetts, "the second most alcohol-consuming town . . . in the United States" (77).

At 12, Nick is drinking beer; at 17 he is drinking to get drunk, sometimes with his mother, and smoking marijuana (and later doing other drugs). For years Nick's father "had been manifest as an absence, a nonpresence, a name without a body" yet, "some part of me knew he would show up, that if I stood in one place long enough he would find me, like you're taught to do when you're lost. But they never taught us what to do if both of you are lost, and you both end up in the same place, waiting" (24).

The place where Nick and his father "end up" is the Pine Street homeless shelter in Boston where 27-year-old Nick is a caseworker and Jonathan Flynn appears, a few months after being evicted from his rooming house. Reluctantly, Nick gradually acknowledges his father's presence in the shelter, and gradually, during the next 15 years, reconstructs the lost years through conversations with his father and his father's acquaintances, letters, and manuscript excerpts. The title of the memoir is what Jonathan Flynn mutters at night, when he is looking for a place to sleep (205).

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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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In the sing-song voice of a Latin-American child, with the repetition and rhythm of a nursery rhyme, the poem tells of "my brother/who spins his eyes" and the child-narrator's awareness of the shame the parents feel about having a mentally retarded son. The poem superbly captures traits of mental retardation, and the sibling child's awareness of its impact on the family.

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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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