Summary:

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.

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Margaret Hale is raised in fashionable Harley Street along with her cousin Edith, but when Edith marries, Margaret returns to Hampshire County in the South of England to live with her mother and her father, a country clergyman. The pastoral life she has imagined is quickly disrupted by her father's confession that he is no longer able to remain true to the Church of England and will leave his position to become a tutor of adult learners in the northern manufacturing town of Milton. The traumatic relocation is exacerbated by Mrs. Hale's diagnosis with a "deadly disease" (probably cancer) soon after the move.

Margaret takes charge of most of the practical aspects of the move and then assumes charge of her mother's illness, acting as an intermediary between the doctor and her parents. As well as learning more about her own family's servant, Dixon, who has been with her mother since her girlhood, Margaret becomes friendly with textile worker Nicholas Higgins and his daughter Bessy, who is dying of consumption (tuberculosis) from inhaling textile dust. The Milton workers' activism and independence appeal to Margaret; she rethinks both class and labor relations as a result, including charitable relationships. Her strong opinions and actions bring her into conflict with the family of John Thornton, a factory owner and self-made man who is also one of her father's students.

When Margaret shields John from a stone thrown by a striking worker, however, he avows his love for her. A series of obstacles to the relationship include Margaret's initial rebuff of John and her dishonesty about her exiled brother's secret return to his mother's deathbed. Before the ending brings John and Margaret back together--as well as calming the tension between workers and factory owners--Margaret experiences not only the deaths of almost everyone she loves, but also the suicide of one of the striking workers.

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This scholarly study examines "what it meant to ’talk of diseases’ in the second half of the nineteenth century" (2) and how discourses of health and illness were a vehicle for exploring individual and social identities, including gendered, racialized, and national identities. Narratives of physical illness are not simply artifacts of Victorian medical culture, Vrettos argues, but offer examples of the pervasive "master narratives" that shaped Victorian middle-class culture.

Individual chapters focus on the ill female body as an expressive text with variable legibility (and on nurses as privileged readers of ill bodies); "nervous illness" and the role of narrative in reconstructing the self; "neuromimesis" or neurotic imitation of disease; and the "politics of fitness and its relation to imperialist ideology." Vrettos discusses fictional works by Louisa May Alcott, (Hospital Sketches; see this database) Charlotte Bronte, George Eliot (Middlemarch; see this database), H. Rider Haggard, Henry James, Bram Stoker, and Harriet Beecher Stowe.

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The protagonist, Anderson, has a skin cancer growing dangerously close to one of his tear ducts. An aging "idler and playboy," he has spent too many years in the sun (67). Anderson consults and promptly becomes infatuated with his facial plastic surgeon, Dr. Kim, "who turned out to be a woman, a surprisingly young Korean-American who even in her baggy lab coat evinced considerable loveliness" (67). Anderson is fascinated with Dr. Kim's body, her visible pregnancy, her way of moving and speaking, and her face. He enjoys the "bliss of secure helplessness" of the surgery itself, performed by Dr. Kim and two female nurses who "rotate[]" around him conversing as they work (67).

While successful, the surgery leaves a small bump on his face that Anderson asks Dr. Kim to correct surgically. The second surgery achieved, Anderson returns a third time for the much more ambitious project of tucking his somewhat saggy eyelids. His goal, however, is not just to tighten slack skin but to make his lids look like Dr. Kim's, "with an epicanthus" (69). The six-hour surgery is both successful and satisfying to Anderson--until he sees a photo of Dr. Kim's husband.

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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.

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Claire, Rachel, and Allison Barber share the trauma of having lost both parents in a strange and sudden accident. The youngest, Claire, and the oldest, Rachel, also share their late mother's migraine headaches. The novel's focus is Rachel's disappearance and Claire's search for her through North America, Europe, and Mexico. By herself and eventually with the help of Rachel's friend and sometime lover, a massage therapist named Brad Arnarson, Claire traces the steps of Rachel's professional (as a freelance science journalist) and personal meetings with researchers and health practitioners who work on migraines.

Initially, Claire's search is motivated by concern for Rachel and intensified by fears that Rachel's worsening migraines may have caused her to take desperate action. Her need to find Rachel is inevitably intertwined, however, with her own migraine experiences and with her drive to individuate within her family and her longterm relationship with her partner Stefan.

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The story opens with the death of the protagonist’s beloved mother, with whom she lives. Ines, a dictionary researcher, is soon jolted from her grief by the excruciating pain of a “twisted and gangrenous gut” (112). After a hospital stay and emergency surgery, she returns home to recuperate from the physical trauma and revisit her mourning. On the day when she can remove the wound dressings, Ines discovers a surprising change in her body: it seems to be turning to stone. Her incision has become a “raised shape, like a starfish, like the whirling arms of a nebula in the heavens” that gradually spreads to the rest of her body, forming "ruddy veins" across her belly and "greenish-white crystals sprouting in her armpits" (119).

Ines assumes that this process is fatal and that she will "observe [death's] approach in a new fantastic form" (121). Deciding to write a record for those who will find her after her demise, she studies the names and nature of minerals in order to understand and describe her metamorphosis. From her new, mineralizing perspective, she realizes that stones can be dynamic and living as well as fixed and dead; minerals are memorials to the relationships and reciprocities between living creatures and dead ones.

Unable to write the record of her transformation, Ines finds herself passionate to be outdoors. She explores the city, looking for "a place to stand in the weather before she became immobile" (127). In an old graveyard, she meets and gradually forms a bond with Thorsteinn, an old Icelandic stonecutter who may also be mourning the death (apparently of a child). The Ines shares the secret of her metamorphosis with the stonecutter and eventually travels with him to his homeland, a geologically young country, where stones are alive and myths tell of “striding stone women.” Thorsteinn sketches here in this landscape and creates a standing stone image of Ines that reflects his ability to see her as she is and find her beautiful: "Petra faction saw that she existed, in there" (150).

Ines's metamorphosis culminates in her inability to see or speak as a human and her ability to perceive a whole new realm of living creatures, "earth bubbles and earth monsters" (151) and other stone people who are "flinging their great arms wide in invitation" (156). She joins their wild dance.

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While riding on a commuter train, Bill Chalmers suddenly forgets who he is and where he is headed. His amnesia is accompanied first by a numbness of his hands and then later his legs. Eventually he is confined to a wheelchair and dependent on his family and a home nurse to care for him. Despite extensive testing and consultations with a variety of doctors, no one can make a definitive diagnosis of his illness.

Chalmers is subjected to many empirical treatments including antidepressants, steroids, plasmaphoresis, and psychotherapy, but his health continues to deteriorate and he loses his job. His wife and son become victims of his predicament. By the end of the story, Chalmers gains insight into his life and discovers that only his dignity still remains in his control.

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When oral antibiotics are no longer effective, the narrator grudgingly consents to begin a six-week course of intravenous antibiotic therapy with Rocephin (a powerful, broad-spectrum antibiotic). She has an infection caused by spirochetes. The illness has been festering for as long as ten years but has only recently been diagnosed. It causes joint pain and stiffness. Her daughter has already been successfully treated for the same infection.

Every morning in her kitchen, the narrator performs the same ritual. She cautiously infuses the antibiotic and imagines that the golden fluid is extinguishing the corkscrew-shaped microbes. At first she experiences a drug reaction, but the event only convinces her that the treatment is actually working.

She senses that her husband and her friend are repulsed by the treatment (especially the syringes and IV apparatus). A visiting nurse, Ginger, comes to the house to perform minor maintenance on the intravenous line. She upsets the narrator with grim information about the infection and an account of a patient suffering from the same disease who is currently in awful condition. Dr. Kennicott, the narrator's physician, has not been so forthcoming about the course of the illness or pessimistic about the prognosis. The narrator chastises Ginger. Both women are now distressed. The narrator's immediate goal is to control her emotions and avoid crying.

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Subtitled "Tuberculosis and the Social Experience of Illness in American History," the book chronicles the medical and societal treatment of tuberculosis in the United States from the perspective of individuals who suffered from the disease. The author includes illness narratives derived from letters and diaries of the afflicted; her analysis spans the period in American history from the nineteenth through the first half of the twentieth century.

The book is divided into four sections. Part I, "The Invalid Experience: New England Men, 1810-60" and Part II, "The Female Invalid: The Narrative of Deborah Vinal Fiske, 1806-44" reveal an interesting contrast in the medical/societal treatment of tubercular men and women, and the resulting differences in their lives as "consumptives." Whereas men were expected to seek a cure by embarking on sea voyages and other travel, women remained at home and sought to control the disease by adjustments in domestic life. For men this meant major disruption and even change of career along with a sometimes exhilarating change of scene; for women it meant relentless anxiety and elaborate coping strategies.

Part III, "Health Seekers in the West, 1840-90" describes the role of cure-seekers in the westward migration and demonstrates how the culture of the time, an optimistic faith in nature and in the economic promise of the newly settled western territories, was reflected in the treatment regimen for tuberculosis. Interestingly, much of the promotional effort to bring "consumptives" west was initiated by physicians who were themselves tubercular.

The final section, "Becoming a Patient, 1882-1940," moves into the modern era with the discovery of the tubercle bacillus, public health measures, and the illness narratives of people who were confined in sanatoriums. Rothman points out that this period marked a transition away from the patient’s ability to understand and determine his/her treatment to one more like the current one in which the medical establishment is the authoritarian "expert."

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