Summary:

In this study of a small group of children followed by an HIV clinic at an unidentified institution, the author describes in detail her experience with the children, their caregivers--sometimes biological family members, sometimes foster providers--and the medical staff responsible for the management of their viral infection. The writer, a humanities professor at a medical school, acknowledges the privilege she felt at having been in a position to develop a close personal contact over several years with the people about whom she writes.

The frame of the study is case-oriented. Each child is described and the medical and social histories of a total of nine are outlined and then fleshed out with personal interviews and home visits made by the writer. In addition to the histories, Hawkins includes a glossary of contemporary medical terms and common acronyms relevant to HIV, a bibliography, and a list of resources for those interested in looking further into this infection as it presents in children.

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This is the story of a child/young adult who had the misfortune of multiple health problems from the age of three until his death at 19. But even more than Jesse's story, this is the narrative of and by Jesse's father as he recalls the emotional rollercoaster accompanying the abbreviated span of his oldest son's life. The author kept detailed journals of his and his son's experiences with the health care professions, while also collecting the boy's artwork which appears to be Jesse's personal record of his own internal struggle.

Although not chronologically linear, the narrative allows the reader into the soul of the parents' agony, from the time of Jesse's initial diagnosis of hydrocephalus, through management of inflammatory bowel disease, and into the final chronicle of unsuccessful liver transplantations.

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The novel follows, in a roughly temporal manner with flashbacks, the evolution of the illness of a child afflicted with promyelocytic leukemia and her family's attempt to save her. At core is the issue of conceiving a child with the hope that she (Anna) will be able to provide what her older, ill sister (Kate) needs to survive. The initial need is met by cord blood transfusion, however, as time passes, Kate relapses, and technology makes new demands on the obligatory donor.

Eventually Anna, at age 13, requests emancipation from the health care control of her beleaguered parents. The reader is introduced to the dilemma as the adolescent donor seeks legal help. Over the course of the novel, which is structured with a revolving first person viewpoint, the reader becomes acquainted with the personal perspectives of many characters, but with no warning of the ultimate outcome of the family drama.

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Novelist A. Manette Ansay's beautifully crafted, emotionally complex memoir describes living with a chronic painful, debilitating condition that began mysteriously and has continued to elude both diagnosis and remedy. Without a clear inciting event or a healing resolution to frame her narrative, Ansay structures her memoir as a series of agile reflections in which scenes from the past and present dissolve into one another, mimicking the distortions of time that chronic illness issues. "Time doesn't pass," she writes. "It bleeds, blurs, washes me along" (27).

Ansay's narrative opens when, at age 36, she has returned to visit the somber rural Wisconsin town of her childhood in a body that has lost its "unselfconscious sense of movement" (10). She recounts how she insisted on beginning piano lessons when she was 7, persevering through years of pain and increasing fatigue that ultimately caused her to withdraw from the Peabody Conservatory of Music in Baltimore. The withdrawal ended her dedicated labor to become a performer. Instead, Ansay navigated medical systems in an urgent, but elusive search for a diagnosis.

Multiple Sclerosis, Chronic Fatigue Syndrome, and Lupus could not be verified. Neither could the possibility that playing the piano with nearly manic vigor (in her teachers' view) damaged her body. Ansay's matter-of-fact description of playing Hurricane with her friends in her grandparents' apple orchard-trucks full of pesticides doused the children as they hid in the branches-suggests another still unproven etiology.

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Summary:

Ryan Knighton writes in his irreverent memoir that his sometimes comical, sometimes dangerous clumsiness—he smashed his father’s car into a boulder and nearly backed a forklift over a co-worker—registered on others as an unfortunate character trait, the carelessness of a distracted teenager. On Knighton’s eighteenth birthday, a doctor offered another explanation: retinitis pigmentosa. The diagnosis of a degenerative eye disease that causes night blindness and tunnel vision before progressing to complete blindness rescued his moral standing. This rescue and the diagnosis seemed to increase rather than moderate his youthful drive for independence along with his search for strategies to make his disability less conspicuous. He tested his independence by attending Simon Fraser University and sharing an apartment with a deaf student, and he discovered that the chaos and flowing alcohol of the local punk rock clubs made him indistinguishable from other stumbling revelers. The clubs became a place where “blindness worked” (50).

Knighton's title Cockeyed: A Memoir captures and prepares readers for his humorous, never self-protective narrative stance and approach to making blindness work. Although he sustains his irreverence as the narrative unfolds, Knighton also makes tamer concessions to his diminishing vision, such as leaning to use the distinguishing white cane that offers "artificial sight" and a "rickety kind of freedom" (68, 154). He later reconsiders his headlong pursuit of independence when he meets his sighted partner Tracy. With her he discovers an "alarming and rewarding" dependent relationship, in which his disability enables an "intimacy few are given" (183). He also quietly reflects on the meaning of blindness after a family tragedy places his disability in a larger context. Here Knighton coaxes his readers to understand blindness as both an individual and a shared incapacity. The death of a loved one, he writes, blinds us from ever seeing him again. "Seeing," moreover, "is itself touched with elegy. . . The world we see is always gone" (181).

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In Dirty Details, Marion Deutsche Cohen writes about the unrelenting labor entailed in caring for her husband Jeffrey at home as multiple sclerosis turns his symptoms from "mere inconveniences" (11) to extraordinary demands, which can disturb her sleep as frequently as twenty times a night.  The premise of her unsparing narrative is that "we have got to spill the dirty details" (26) of such arrangements before the endurance-draining responsibilities of home care such as hers can be understood and redressed.  In a culture that favors narratives of seemingly heroic individual effort, Cohen's brutally forthright descriptions of the effects of Jeff's needs on her life can be mistaken for a self-pitying complaint, rather than an urgent, revelatory, political call to action.  Like her husband, a well-published physicist at the University of Pennsylvania when diagnosed with MS at age 36 in 1977, Cohen is an accomplished professional.  With a PhD in mathematics, Cohen teaches college students as well as publishes poetry and prose.  She and her husband also shared, with increasing asymmetry, the parenting of their four children.                 

Cohen captures the wearying routine of her days in her narrative's echoing refrain, "nights, lifting, and toilet."   The nights refer to Cohen's dangerously disrupted sleep.  Her husband's respirator can sound every half hour or so, inciting her to worry "about the psychological effects of seldom being allowed to finish my dreams" (23).  (When she asks if the machine can be fixed, she's told that it's supposed to behave that way.  By implication, so is she, despite the toll on her well-being.)  Yet she daily rallies the strength to lift her husband on and off the toilet, a feat, among others, that sometimes defied the powers of several hospital nurses working together.   Toilet also means responding to Jeffrey's regular calls to her to drop what she's doing, run upstairs, and bring him a jar.  The jar at least relieves her from lifting.  She experiences only intermittent relief, however, from finding and keeping home health aides who are able to show up reliably and behave civilly during the few hours per day they can be funded.  What results from these tests of human stamina, Cohen tells us, is not "ordinary stress" that some optimistically believe can be managed by taking stress reduction workshops, but rather "dire straits."  "Calling dire straits stress," she corrects, "undermines well spouses and makes us feel alienated and confused about where we stand" (32). 

It's that standing in the broadest sense of the word that Cohen's book most searingly addresses.  While Dirty Details contains one woman's account of caring for a disabled husband at home, the book's wider purpose is to make the labor of family caregivers visible with all its strains, conflicts, messiness, failures, anger, and, at times, humor.   As the straights become increasingly dire, though, Cohen writes about what happens to love as she moves from sustaining tenderness, candor, and their physical intimacy to diminishing her compassion for Jeff and saving herself:  a "pure survival instinct" (87).   After sixteen years in his family's care, Jeff at first reluctantly enters Inglis House, a residence that provides as much independence as possible for those who cannot live independently, where he continues to write and publish.  Cohen's professional life, social life, and beloved parenting once again flourish.  The story she is freed to write (illustrated with photographs by Anna Moon taken with Jeff's consent) lead readers away from her particular circumstances toward a comprehensive interrogation of social and medical systems that operate by leaving the most chronically ill and disabled citizens in their families' care by default.   And leave the families in dire straits.

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This slim chapbook contains eleven poems that tell the story of a mother and her alcoholic son--how she suspects and then discovers his addiction, how she vacillates between fear and denial, despair and hope. The place in between these extremes of emotion is the Hurricane Zone, and these poems--written by "Anonymous" to protect the son's identity--are hard-edged, starkly moving, and ultimately redeeming.

In "Birthday," the narrator looks back thirty-eight years to her son's arrival, "his mashed, chinless face / dented forehead /breaking its way out of me." The next several poems ("Foreshadowing," "Denial," "Shikker," "Postcard") address denial, how a parent can suspect their child is slipping into the abyss of alcohol or drugs and still wish to create a different story from the available details.

Finding help in Alanon, the narrator begins to work her program. In "Late Lilies" and "Detachment," she finds where a mother and son's boundaries begin and end: "he isn't me, / he isn't mine." In "Give Us This Day" (referring to the group's recitation of The Lord's Prayer at meeting's end) the mother, "lone Jew, lone atheist," learns detachment, that "cloud shadows of startling darkness / moving over the water are not the water."

"Ferryboat" and "Hope" reveal the narrator's painful longing to protect her son as well as her own obsession: a series of affairs early in her marriage when this son was a teenager. That memory, one both cherished and regretted, offers a thin moment of hope: "Anyone who wants to can change." But even when the son is good--able to work on a second novel--there is uncertainty and near-miss communication.

In "Hurricane Zone," the final poem, there is no easy resolution. The victory comes in addressing the topic of alcoholism straight on and making these poems available for others who may be struggling along the same journey.

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Summary:

This short novel tells the story of Renee and Michael Talbott and their son Evan, a young man "admitted to the hospital as a voluntary patient when he was no longer able to survive in the outside world." Evan's schizophrenia and recurrent institutionalizations, described from his mother's point of view, devastate his family and drive a wedge of guilt and resentment between his mother and step father.

The novel, although written in simple, straight-forward prose, suggests a Dickens-like expose' of social ills, human entanglement, and (perceived) medical mistakes. At the book's conclusion, Renee, sensitized to the fate of all who suffer from mental illness, finds no resolution even when Evan is, for a time, stable and independent.

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Banishing Verona concerns a 22-year-old house painter living in London. One soon realizes that Zeke Cafarelli is not normal. He has had a nervous breakdown a few years earlier; collects clocks--he has nine at the beginning of the novel and adds two more by novel's end--which he takes apart and restores; he has basic questions about interpersonal relations that, were it not for his illness, mentioned once, briefly and vaguely (24), one would describe as childlike naiveté.

For example, he wonders why people lie. Or, why is it so easy to identify vegetables (his parents are greengrocers) but not people each time one encounters them in even slightly different settings? Several times the author describes Zeke's mother or father (whom Zeke calls Gwen and Don, respectively) while their son is trying to confirm their identity as his parents.

Quite early in the narrative, like a dea ex machina, Verona MacIntyre enters Zeke's life. Or perhaps Venus on the half shell would be a more specific identification of the dea, since Verona is pregnant, and soon becomes as naked as Venus in the famous painting by Botticelli, to whose paintings Zeke is likened with his angelic appearance and lustrous hair. The two become oceanic--if not star-crossed--lovers-at-first-sight since Verona has to traipse off to Boston to help bail her sociopathic brother out of yet another financial and amorous mess of his own making. Despite the appearances of Jigger (Verona and Henry's grandfather in the persona of a long letter to Verona), and Toby (a mutual lover-friend of Verona and Henry), and Maurice (Gwen's lover), the plot does not seem unwieldy.

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Louis Drax is a nine-year-old boy living in France with his stay at home mother and Air France pilot father. Such an apparently normal family description is the merest tissue of appearances. The father is probably an alcoholic and unfaithful; the son is "accident-prone" (a nearly fatal episode of SIDS at two weeks of age, a near fatal electrocution at age 6 after falling on the tracks of the métro in Lyon; salmonella, tetanus, botulism, meningitis, etc. [or, as Louis is fond of saying, "blah, blah, blah."]) and the mother has issues that only emerge as one becomes more deeply involved in what is a mystery story.

Like Gabriel Garcia Marquez’s A Chronicle of a Death Foretold, or Janet Lewis’s superb The Trial of Søren Qvist, one knows the ending early on (page 16 in Louis Drax), but not the details. The why and the how are the stuff of the novelist’s art in all three books.

With premonition of more danger, Louis goes on a family picnic (see below for the author’s biographical basis for this tale) and winds up at the bottom of a ravine, dead. Drowned and dead. A few hours later, in the morgue, he is found to be alive. Comatose and in a persistent vegetative state but alive. He is therefore transferred to the care of a neurologist specializing in comatose patients at the Clinique de l’Horizon (formerly l’Hôpital des Incurables).

It is here that the mystery unfolds. The questions are: How did Louis end up at the bottom of the ravine? Did his father, now missing, push him as his distraught mother alleges? What role does the clearly neurotic mother play in this tragedy? And who exactly is Louis Drax? Lastly, how do the mysterious letters allegedly from him, written while still in a coma, come to be?

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