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Geneva Jordan, a successful stage actress in New York, reluctantly agrees to stay for a month with her thirteen-year-old nephew who has Down syndrome so that his parents can take a long-postponed and much-needed vacation. She is unmarried and has no children herself, has always found herself a little intimidated about close interaction with the boy, and leads a complicated personal and professional life in New York which the requisite month in Minnesota will interrupt.
Nevertheless, she takes on the job and gradually finds herself adapting to rural life, substitute parenthood, and the special needs of her nephew. She makes friends with the mother of Rich's best (and only real) friend, Conrad, who has cerebral palsy. After the month is over, she returns to New York, only to realize that her life lacks a dimension that caregiving gave it.
She also realizes she left a good man behind in Minnesota--a local divorced father who has become an unsought love interest. Nevertheless, she remains on stage and in the city until the death of her nephew's friend calls her back to Minnesota, and to the man with whom she can finally imagine taking on a family life of her own.
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.
Summary:Twelve-year-old Jake moves from Boston to the rural port town of Wicasset, Maine, with his mother, father, and six-year-old brother, who has "fits" as a result of what we now know to be cerebral palsy. The family keeps Frankie hidden, because neighbors in Boston regarded his disease as evidence of some wrongdoing on the parents' part and shunned them. It is 1838, and the father has lost his job in a bank because of the "Panic of 1837," and takes a job at a lumber mill for which he is ill suited. As the job keeps him away except for weekends, Jake has to learn how to gather food, fuel, and local information to care for his mother and brother in a small, drafty house.
Like her earlier collection, Words Like Fate and Pain (see this database), the thread of connection among these exquisite poems is the experience of chronic suffering. However the poems vary widely in focus and content, including those that touch on the intimacies of love found and lost, family relationships, musings on the road, political events, philosophical ideas, and qualities of words themselves. All open doors to an inner life deeply examined and thoughtfully lived. The poems deal frankly not only with the experiences of various kinds of pain, but with pain remembered and feared, with the mental detachment that enables one in pain not only to endure, but even at times to be playful about the business of living life in spite of ongoing suffering.
One is aware of the speaker in these poems as not only a patient, but as a writer who loves words, a woman who enters wholeheartedly into the relationships life puts in her path, and an observer with a wry wit and sharp sense of irony. Poem titles include "Cripple Time," "Trauerarbeit," "Phantom Life," "The Mind, That Ocean," "Pain as Metaphor," "Sleeping in My Notebook," "One, With Egg Roll," and "Waltzing the Gorilla."
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.
Summary: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.
In December 1995, at the age of 43, the author suffered a sudden and severe stroke in the brain stem and emerged from a coma several weeks later to find himself in a rare condition called "locked-in syndrome" (LIS). Although his mind was intact, he had lost virtually all physical control, able to move only his left eyelid. There was no hope of significant recovery. This memoir, composed and dictated the following summer, consists of Bauby's brief and poignant reflections on his condition and excursions into the realms of his memory, imagination, and dreams.
The composition of this book was an extraordinary feat in itself. Unable to write or speak, Bauby composed each passage mentally and then dictated it, letter by letter, to an amanuensis who painstakingly recited a frequency-ordered alphabet until Bauby chose a letter by blinking his left eyelid once to signify "yes." In what was likely another heroic act of will, Bauby survived just long enough to see his memoir published in the spring of 1997.
Dominic Birdsey's identical twin, Thomas, is paranoid schizophrenic. With proper medication he can work at a coffee stand, but occasionally he has severe outbreaks. Thinking he is making a sacrificial protest that will stop the war in the Middle East, Thomas cuts off his own hand in a public library. Dominic sees him through the ensuing decision not to attempt to reattach the hand, and makes efforts on his behalf to free him from what he knows to be an inadequate and depressing hospital for the dangerous mentally ill.
In the process, Dominic reviews his own difficult life as Thomas's normal brother, his marriage to his ex-wife which ended after their only child died of SIDS (Sudden Infant Death Syndrome), and his ongoing hostility to his stepfather. First in Thomas's interests, and then for his own sake, he sees a gifted Indian woman employed by the hospital as therapist. She helps Dominic come to understand Thomas's illness and the family's accommodations or reactions to it in terms of the whole family system.
In the course of treatment, Dominic discovers sexual abuses taking place in the hospital and helps to expose the perpetrators. He succeeds in getting Thomas released, but Thomas soon commits suicide. After Thomas's death Dominic finds out about their birth father--a secret their mother had shared with Thomas, but not with him.
He also learns that the woman he has been seeing is HIV-positive. She asks him to keep her baby if she dies. At first he resists, but later, having found his way back into relationship with his wife, he takes the baby. The book ends with several healing events that leave Dominic able to cope with the considerable loss, failure, and sadness in his personal and family history.