Summary:

Professor of performance studies at New York University, Peggy Phelan narrates the story of a vision disorder that began when she was 23 years old, caused by "open-angle glaucoma," a difficult-to-treat condition in which the vessels draining ocular fluid periodically constrict. The episodes are excruciatingly painful and disorienting: "I feel a staggering push behind my right eye. The right upper half of my face is on fire: I am certain that my eye has fallen out of its socket . . . " (508).

Phelan resists patienthood, beginning with her first visit to the doctor, in which she underplays what has happened to her. Rejecting surgery, coping with side effects of the drugs she must take, and concerned about her ability to continue as a visual arts scholar, she muddles through for several years. Then she experiences a frightening, vividly described episode of temporary blindness, which is followed by a migraine headache. Six months later she agrees to have surgery.

During the surgery, under local anesthesia, "my eye, which is frozen, can still see things as they pass over it . . . colors I have never seen before . . . I am seeing the roof of my own eye from the interior side. It is utterly breath stopping. I cannot speak" (521-522). Enabled to see her eye from a perspective that was not available to the physician, and grateful for this "visionary experience," Phelan finally accepts her situation. She is not cured, although her condition improves. "My story is finally the same as those of all the other patients . . . The only difference between me and them comes from the words I’ve suffered to find and the words I’ve suffered to flee" (525).

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In his dedication to the book, the author addresses his sons: "The secret to life? Clean your room." The meaning of this becomes clear as Vernon traces the story of his brother, Paul, with whose death the book begins. Paul was 15 years older than the author and had been only a shadowy presence in his life. When Paul died, John Vernon had to exercise his duties as executor of Paul's "estate," an estate that turned out to be a festering, stinking nightmare of a house.

The house was filled with 20 years worth of trash that represented 20 years of Paul's life as a recluse. This memoir is an attempt to imagine Paul's life and to understand the reasons for the course it took. It is also an attempt to "bear painful news" and to reflect on his own reactions to what he discovers and to Paul's death.

In order to do this, Vernon calls on history, interweaving his memories and what was revealed of Paul's life after his death with discussions of the beliefs and discoveries of past eras. Finding himself nailing a thermometer to the outside of Paul's house, the author describes the development of thermometers, and the nature of heat ("Heat"). What, he asks, is meant by "normal" atmospheric pressure? How abnormal was his brother? After all, he bought nursing-home insurance a year before he died. And how normal is he, John Vernon, affixing a thermometer to this wreckage?

As he builds a primitive set of steps to the house, the author explores the history of tool making and speculates about what distinguishes humans from animals; did Cain murder Abel with a hammer, and is he, John Vernon, his brother's keeper? ("Tools") Similar expositions and speculations interdigitate in subsequent sections entitled "Body," "Corpse," "House," "Origins." [At the end of the book, there is a bibliography of references for each section.]

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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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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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Knapp describes how she gradually became an alcoholic, drinking more and more, until she couldn't live without alcohol. She found drinking to be the most important relationship in her life; she loved how it made her feel, how it coped with her fears and worries. When family and friends spoke to her about her drinking, she made promises to them she couldn't keep. Finally one time while drunk she was carrying two children accross the street when she fell. She could have killed them. Three months later she checked into rehab and gave up drinking. She used the support of Alcoholics Anonymous to help her stay sober and to gradually learn how to love people, instead of alcohol. Her need for protection and for escape, which alcohol gave her, had to be replaced with an honest facing of problems and with social skills. This memoir also describes her struggling with anorexia.

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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 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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