Showing 261 - 270 of 287 annotations tagged with the keyword "Chronic Illness/Chronic Disease"

Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

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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My Sister's Keeper

Picoult, Jodi

Last Updated: Nov-22-2009
Annotated by:
Willms, Janice

Primary Category: Literature / Fiction

Genre: Novel

Summary:

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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Life with Sam

Hutner, Elizabeth Hall

Last Updated: Nov-22-2009
Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

This little volume of poetry and photos is a narrative of the life and death of a small boy with leukemia and the connection this creates with his mother, his father, and his stepfather. The poems are created by the child’s mother (the author) during the illness and after the death of her son in his early childhood; photos are done by the author’s brother. The author creates the scenario in her brief introduction to the collection of poems and photos.

In a stuttering fashion, the reader is guided through mother’s grief as she holds her son through multiple chemotherapy sessions, reevaluations, disappointments, and finally, the terminal events. The entire poetic experience is calmly reflective, but the deep grief of mother bubbles to the surface--in a controlled manner that makes the reader feel her pain, and also accept her acceptance.

The poems themselves are compelling in their simplicity: after Sam dies, the author writes, of a note of condolence received by a friend, "Now that I have a child of my own, / a friend writes, "I understand your loss." / "No," I think, "now you understand / what I had."

The author, as she adapts to the absence of her firstborn, has a second son. She reflects on the joy that she feels, but the impossibility of replacing a first love. The event of Sam’s death is so ethereal that it cannot be dated. It is a universal experience for those left behind. And Hutner leaves the reader with this sense of timelessness with her poetry, and with her own death from breast cancer in 2002.

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Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: History

Summary:

This is the wrenching history of the development, evolution, and eventual obsolescence of the leper colony established in 1866 on the isolated and only sometimes accessible peninsula on the Hawaiian island of Molokai--and the lives of the people who were exiled there to die over a period of more than 100 years. The tale opens with the declaration by the Board of Health that all persons proven (or strongly suggested) to be afflicted with leprosy be exiled immediately to the site on Molokai.

The author dramatically describes the selection and separation of the exiles from their families and the tortuous and sometimes deadly sea voyage to their primitive new homeland. Mixed with the public policy and the individuals who made and implemented it, are the descriptions of the hospital in Honolulu where diagnoses and dispositions were rendered, as well as the poignant personal stories of the "detainees." The reader follows the colony from the arrival of its first 13 patients in 1866, through its peak population of 1,144, to its residual 28 in 2003.

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Limbo: A Memoir

Ansay, A.

Last Updated: Nov-21-2009
Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

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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Cockeyed: A Memoir

Knighton, Ryan

Last Updated: Nov-21-2009
Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Memoir

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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Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

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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Migraine

Pastan, Linda

Last Updated: Nov-19-2009
Annotated by:
Ratzan, Richard M.

Primary Category: Literature / Poetry

Genre: Poem

Summary:

The poet describes the suffering associated with a migraine headache.

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The Blackout Sonnets

Larkin, Joan

Last Updated: Nov-19-2009
Annotated by:
Davis, Cortney

Primary Category: Literature / Poetry

Genre: Poems (Sequence)

Summary:

This sonnet sequence, found in part III of the poetry collection, A Long Sound, opens with the narrator preparing to date her music teacher's son, a man she has had a crush on since age twelve. Now she is eighteen, "damaged goods" according to her mother, and about to embark on a date.

In the second sonnet, the narrator's date begins to ply her with alcohol, and by the third sonnet, she numbly acquiesces to his advances. Drunk and in a blackout by the fourth sonnet, she re-lives the emotional and physical pain of her recent abortion, an event her whole family "was in on."

In the fifth sonnet, she wakes in her date's immaculate Buick as he drives her home and asks imperiously if she "does this sort of thing often." The sixth sonnet is both touching and horrifying-she recalls that, in spite of the man's disdain, she was so hungry for love that she wished he would kiss her good night.

Returned to the house she "hated," she mourns the "sore night" of the abortion, a memory she cannot erase with alcohol and sex. In the final sonnet, the narrator--chided, belittled, and abused by both her mother and her date--experiences a moment of awful clarity. This is the beginning of her recovery, a revelation recognized in retrospect.

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Words Like Fate and Pain

Fiser, Karen

Last Updated: Nov-19-2009
Annotated by:
Davis, Cortney

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

This volume is divided into four parts, each containing powerful and fairly short poems--rarely longer than one page and often less than 30 lines--that share the author's experience of disability. The four sections unfold the struggle of coming-to-terms with disability organically, beginning with the body and concluding with the will to survive and transcend the physical.

Section One considers the role of fate or luck (The Short Song of What Befalls--see this database, "Words Like Fate and Pain"), the burden of chronic pain ("Night Shift," Pointing to the Place of the Pain--see this database, "Slow Freight"), the desire to escape physical limitations ("Not Down Here," "What Comes Next"), and the difficulty of adjusting to an altered self image ("What Happened to You?" "Protect Yourself From This").

The sections that follow offer poems that attempt to understand disability intellectually and viscerally ("Levels of Being," "Loving the Clay,"), to look beyond the suffering self to the suffering of others ("Beginning to Write," "The Word 'Class' Should Not Appear in the Poem"), and finally to love and accept what's given ("What Keeps Me Here," "Dreaming the Tree of Life").

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