Showing 71 - 80 of 258 annotations tagged with the keyword "Illness Narrative/Pathography"
Diagnosed in 1985 with myalgic encephalomyelitis/chronic fatigue syndrome, Susan Wendell's reflections address her struggle first with illness and then with the lasting "social and psycho-ethical" conflicts illness and disability generate in contemporary Western culture. Her specific focus on feminist theory comes from her increasing awareness that "knowledge people with disabilities have about living with bodily suffering and limitation and how their cultures treat rejected aspects of bodily life . . . did not inform theorizing about the body by non-disabled feminists and that feminist theory was consequently both incomplete and skewed toward healthy, non-disabled experience"(p.5).
A chapter on "Who is Disabled?" engages current definitions of disability, who produces them, for what purposes, and to what effect. This chapter addresses the cases of illness and aging and explores the political and other values of the category, "people with disabilities." Other chapters discuss the social construction of disability, disability and illness as stigmatized states that might be re-envisioned as "difference," the enculturation of myths about bodily control and independence, medical authority's inflection of embodiment, the importance of disability perspectives to feminist ethics, and perspectives on transcending the body.
Summary:James Lang was diagnosed with Crohn's disease in 1996, when he was twenty-six years old. Five years later, however, a particularly severe bout with Crohn's, including a hospital stay, dramatically changed his relationship to the disease. Lang's memoir explores his ongoing relationship to Crohn's disease, both in the context of medical reassessments and diagnostic adjustments and in relation to his personal and professional development in his first year as a tenure-track professor of college English.
Robert Murphy was a professor of anthropology at Columbia University when he became progressively paralyzed by an inoperable spinal cord tumor. His book is a personal journey through profound physical disability, an exploration of the self, and a study of the social construction of disability ["Disability is defined by society and given meaning by culture; it is a social malady" (4)]. As he writes The Body Silent he is virtually quadriplegic, hitting the keys of his computer with the eraser end of a pencil held in place by a 'universal cuff' wrapped around his palm. He is still traveling to Columbia to teach his classes.
Murphy applies the metaphor of an anthropological field trip to his experience: "This book was conceived in the realization that my long illness with a disease of the spinal cord has been a kind of extended anthropological field trip, for through it I have sojourned in a social world no less strange to me at first than those of the Amazon forests. And since it is the duty of all anthropologists to report on their travels . . . this is my accounting" (ix). Drawing not only on his own experience but also on research for which he received funding, Murphy instructs his audience in the metaphysics of his situation, and in the social as well as physical challenges of disability.
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).
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.]
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).
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).
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.
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).
Summary: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.