Summary:

This memoir by Joan Saltzman recounts her marriage, in her forties, to a man whose kidney disease was progressing to a point of choice between dialysis or transplant.  The first half of the book is a lively account of their somewhat stormy courtship, layered with memories of her childhood and reflections on tensions with and loss of her parents.  The second half focuses largely on the difficult decision to donate one of her own kidneys to her husband.  Even undergoing tests to determine she was a match required some wrestling with fear and resistance.  The chronicle continues through bumpy recoveries to a new level of intimacy and understanding of ongoing shared life in new terms.  Her idea of "complete recovery" had to be modified once she recognized that even a successful transplant doesn't restore a former state of health, but does restore a new range of possibilities.

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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.

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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.  

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When Gwen is twelve, her parents, suspecting her failure to show signs of normal adolescent development may be more serious than they had thought, have her tested and learn that she has Turner syndrome, a chromosomal disorder that frequently manifests in short stature, broad chest, low-set ears, amenorrhea and sterility. The diagnosis brings a new source of discord into an already somewhat dysfunctional New England family.  Gwen's mother, Paulette, prefers not to talk openly about Gwen's condition, or even, for a time, to admit it is real.  Her father, a scientist at MIT, is deeply interested in finding out more about it, but the clinical nature of his interest offends his wife.

Eventually the parents divorce, each to cope with different kinds of loneliness and alienation from Gwen and her two brothers.  One of those brothers, the designated achiever, is gay, but remains closeted for some years, in keeping with his mother's family culture.  The other, after a somewhat rebellious youth, marries a girl from blue-collar California, takes a teaching job, and eventually finds himself identifying with his son who receives a diagnosis of ADD not available during Scott's own youth.  The novel follows the individual stories of the five family members, each of whom carries his or her own burden of suffering, and brings them together during an unusual holiday gathering at the end, not for magical closure, but for a remarkable moment of retrospective understanding and opportunity for each to do some self-assessment and self-disclosure.

At the heart of the story is Gwen's "condition," recognized by all of them as the sadness that lies at the core of their family's chronic discomforts with one another.  Gwen herself finds her way into an authentic love relationship in her mid-thirties with a Caribbean diving guide she meets on a chartered excursion.  Though her mother is horrified and suspicious, and the rest of her family bemused, the experience of authentic love and friendship liberates Gwen from a history of self-defeating presumptions about her own limitations.

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Robert and Jinnie Salesby are an English couple staying at a French resort to restore Jinnie’s health. Rather than a dramatically delineated plot, the story is comprised of a series of moments in daily life, drawn with psychological precision and depth. Robert, whose point of view the narrator explores most of the time, is characterized through his frequent shifts in perspective--from the present, shaped by his wife’s illness, to their past experiences of health and joy. As the story traces the Salesbys’ daily regimen of meals, walks, and rest, Robert’s grief and hostility regarding his wife’s illness becomes ever clearer.

The hotel’s other inhabitants, who are mostly drawn as caricatures--the American woman who talks to her dog, for example, and the Honeymoon Couple, whose vigor and sexuality provide a foil to the Salesbys’ subdued relationship--call Robert an "ox" and observe his solitariness and lack of apparent emotion. The local children react to him as if he is a figure of sexualized threat. Jinnie’s perspective is revealed only through her self-effacing cheerfulness, her appreciation of her husband, and her plenitude of that "temperament" her husband seems without.

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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.

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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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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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