Showing 71 - 80 of 262 annotations tagged with the keyword "Illness Narrative/Pathography"
Summary:This memoir, written with the help of Bart Davis, was published two years after the publication of a study that documented Price's "hyperthymestic syndrome"--the exceptional comprehensive memory of the details of daily life that dates back to her early adolescence. Price tells of the relief and fascination she felt in working with researchers at U.C. Irvine to arrive at a diagnosis of her rare, and in some ways unprecedented, condition. The narrative includes both her own account of the testing she underwent for purposes of diagnosis and brain mapping, and her story of growing up with an exceptional, and in some ways burdensome capacity to remember with detailed accuracy everything that happened, by date, including vivid replication of the emotions and sense experiences of the remembered moment. Her story includes a particularly thoughtful chapter on losing her husband suddenly and the role of memory in mourning.
Summary:This impactful memoir recounts the events of the summer of 1996 when Greenberg's fifteen-year old daughter Sally "was struck mad," as he puts it (3). Greenberg's portrayal of Sally's behavior as her illness erupts -seemingly from nowhere-- is staggeringly vivid and trustworthy, as is his description of the series of reactions that belong to him, the father who cannot protect, cannot even reach his daughter, although she sits beside him.
Summary:Each poem in this collection is preceded by brief comments both by the author/patient and by her psychiatrist. Together the poems chronicle incidents in the interior life of a woman who has lived with schizophrenia for 35 years, been hospitalized, changed doctors and medication, undergone intense feelings of isolation, and also has experienced remarkable support and love from a twin sister and a few loyal friends. The poems range in tone from matter-of-fact tellings of psychotic episodes to reflections on relationships, both personal and professional, that have been important in the course of treatment. The book is organized as a chronology that traces the trajectory of diagnosis, illness, treatment and recovery; the final section is entitled "Beginning Again." Read in sequence, they give a rich sense of the writer's life, struggles, resilience, and unusual self-awareness.
This memoir purposefully intertwines a personal and professional coming of age with the chronic illness that shaped it. Roney's stories of her adolescence, college years, and beyond (she is now a graduate student approaching her fortieth birthday) integrate the story of her diagnosis with juvenile diabetes around age 12 and her changing approaches to living with, rather than simply "managing," her illness.
How diabetes inflected Roney's development as a woman, including such issues as body image; food, eating, and weight; and sexuality and love relationships, is a recurrent focus, with her unsatisfactory relationships with men often taking center stage. One chapter addresses her decision, in the face of fears about blindness, to become a writer instead of a visual artist. Other sections address travel and exercise, both explored as solo experiences and as struggles negotiated in the company of friends and strangers. Roney's experiences with family members and medical professionals in the context of her illness are an occasional focus.
While in most of the memoir Roney positions herself as an ill person in relationships with healthy people, in two sections she explores her relationship to others with diabetes: a woman her own age whose illness has made her completely blind, and her aging cat. Throughout the memoir, Roney moves from her own experience to broader philosophical reflections on the social construction of illness, especially the way that interpersonal relationships shaped by "invisible" disabilities like diabetes reflect cultural beliefs about illness and how it changes personhood.
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).