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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Poet and essayist Floyd Skloot gives us his third memoir; each of the three concerns a somewhat different facet of his attempt to recover from and live with mental and physical damage resulting from a viral illness that struck him in 1988. This book, written approximately 15 years after the initial insult, "is a memoir of the reassembled life" (ix). Life for Skloot is different than before, but a kind of order--Skloot calls it "harmony"--has been constructed out of memory loss, mental disorder and incoherence: "I have learned to savor the fragments themselves, and to live in the moment" (xi). A World of Light is perhaps more a collection of essays than a memoir.

Most of part one and some sections of parts two (Ch. 5, "1957") and three (Ch. 15, "Taking Stock") concern Skloot's interaction with his aged mother as she slides further and further into dementia. Anyone who wants an idea of what it is like to interact with a person who has Alzheimer's disease should read these sections. Skloot masterfully reproduces the often bizarre conversations that occur--the sometimes maddening repetition of comments during attempts at conversation.

Skloot's mother admires his wife, Beverly, and repeatedly instructs them to marry each other, no matter how often they assure her they are already married. She forgets their previous visits to her in the nursing home, although they visit regularly, and becomes anxious when they leave, even though she isn't certain who they are. Skloot writes about how receptive his mother is to music, which delights her, and how she sings snatches of old songs triggered by the words of any offhand comment--phenomena that have been noted in some other descriptions of Alzheimer's patients.

The essays in part two look back on Skloot's childhood, his family's background, and on his development as a writer. Part three centers on his current life with his wife, Beverly, whose home in rural Oregon provides a refuge for them both (although they are now in the market for different surroundings).

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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 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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The poet's daughter suffered from Guillain-Barré Syndrome and was in a rehab institute. The mother, who narrates the poem, observes several of the other children there, all of whom seem either abandoned by their parents or orphaned. Each stanza describes a different child with a different disability (and no family there for him or her).

The only mother who appears stays far away from her child. "When he goes home, Frankenstein with cane, his mother / clicks her high heels quickly away, as far ahead / of him as she can get."

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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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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 border of this short poem refers to the boundary separating the narrator both from those who are well, and from her own self before she became ill with a painful chronic disease. She is an "exile" who must tell stories about what life was like in another country (good health) in a perhaps idealized past.

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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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