Showing 211 - 220 of 678 annotations tagged with the keyword "Illness and the Family"

Where is the Mango Princess?

Crimmins, Cathy

Last Updated: Nov-30-2009
Annotated by:
Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The lives of writer Cathy Crimmins, her lawyer husband Alan Forman, and their seven-year-old daughter were changed forever on July 1, 1996, at a lake near Kingston, Ontario. "Alan’s brain got run over by a speedboat. That last sentence reads like a bad country-western song lyric, but it’s true. It was a silly, horrible, stupid accident." (p. 5). While Alan steered a small boat back to dock at the end of their vacation, a teenager drove a speedboat literally over him, causing major traumatic brain injury (TBI) including seizures, coma, hemorrhage and paralysis.

Crimmins chronicles her husband’s remarkable recovery with a mix of humor, medical information, anger at HMO denial of benefits, and gratitude for the care of physicians, nurses, therapists, EMT, friends and family during this grueling, and in many ways, never-ending ordeal. Although Alan survived -- and is now capable of walking, speaking, reading, loving, working and driving -- he is a different person. The injury to his frontal lobes causes him to be disinhibited, erratic, angry, irrational, petulant, obsessive, devoted yet cruel to his daughter, and prone to severe "cognitive fatigue."

TBI is a bizarre, unpredictable illness. Crimmins notes that the degree of Alan’s recovery is atypical for the force of his trauma. In addition, TBI survivors say and do wacky things: "Where is the mango princess?" was one of Alan’s first utterances after emerging from his coma. Alan’s pre-accident sharp-edged humor was replaced by bland affability and a disturbingly vacant gaze. Yet some of what he says and does is heart wrenching and poignant.

The book clearly documents that the trauma is not limited to the patient. As Crimmins so eloquently and honestly recounts, she, her daughter, and all who knew Alan were traumatized by the accident and its aftermath.

Crimmins is an aggressive caregiver, thrust kicking and fighting into the caregiver role. Her advocacy for her husband, including research into the best rehabilitation facility, day hospital, vocational rehabilitation program, doctors, therapists, etc., was unwavering and crucial to his optimal care and outcome.

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Three Junes

Glass, Julia

Last Updated: Nov-30-2009
Annotated by:
Shafer, Audrey

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Constructed as a triptych, the novel chronicles several generations of a Scottish family, the McLeod’s, across three Junes: Part I Collies, 1989; Part II Upright, 1995; and Part III, Boys 1999. In the first part, patriarch Paul McLeod assuages his grief and loneliness following his wife’s death by traveling to Greece on a tour. He tells the tour guide about his wife’s lung cancer: "A terrible ordinary death, you might say. Or an ordinary terrible death." (p. 23) Paul’s unrequited yearning for Fern, a young artist, heralds a succession of missed opportunities for expressions of love involving the McLeod’s.

The second part is a first person narrative by Fenno, Paul’s eldest son. Fenno, the gay owner of a Manhattan bookstore, cares for Malachy, a New York Times music critic, who has AIDS. Paul’s death brings the three sons together (Fenno and his younger twin brothers David, a veterinarian who lives in Scotland with his wife Lillian, and Dennis, a chef, who arrives from France with his wife and children).

The family relationships are complicated, and David’s infertility leads to revelations about strengths and weakness of various family members. Meanwhile, Mal’s illness and his decisions about controlling the end of his life, also give Fenno insight into loyalties and family secrets.

The last section, a coda, reverts to third person narration and reintroduces Fern, now widowed due to a freak accident and also pregnant. Themes of parenthood, responsibility and relationships continue to be developed.

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Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Written by a Jungian psychoanalyst about her own experience with metastatic breast cancer, this memoir is a two year chronicle extending from the day of diagnosis through sequential remissions and relapse, to the remission following stem cell transplant. In the course of this voyage, the author deals with her own fear and anger, the range of responses elicited from family and friends, and her anxiety about the technology and impersonality of the health care system.

The book ends, but Middlebrook's story does not. She is feeling well as she recovers from her transplant. She knows she still has a lethal tumor. The only thing she doesn't know is when it will claim her life.

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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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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:
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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Hurricane Zone

Anonymous

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

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

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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Sea of Glass

Farrington, Carolyn

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

Primary Category: Literature / Fiction

Genre: Novel

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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