Showing 71 - 80 of 676 annotations tagged with the keyword "Illness and the Family"

Annotated by:
Poirier, Suzanne

Primary Category: Literature / Nonfiction

Genre: Investigative Journalism

Summary:

When Lia Lee's sister slammed the front door to their Merced, California, apartment, Lia experienced her first in several years of increasingly severe seizures. The Lee family knew that the noise had awakened a dab, an evil spirit who stole Lia's soul. They also knew, in the midst of their grief for their infant daughter, that people suffering from "the spirit catches you and you fall down" often grew up to be healers in their Hmong culture.

Not surprisingly, the physicians and other health professionals who worked with Lia and her parents over the next seven-plus years did not share this diagnosis--most of them did not even know about it. Fadiman melds her story of Lia, the Lees, the family's physicians and social workers, and countless other people who enter the Lees' life (usually uninvited and unwelcome) with the long history of the Hmong people, their religion and culture, and their more recent lives as refugees from war in Laos and Cambodia (and the troubled history of their relationship to the U.S. military system).

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Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Autobiography

Summary:

Entering a school as the first student with a serious disability (cerebral palsy) after starting his education in a "special" school, Christopher Nolan had to develop careful and clever strategies for developing friendships, allowing others their curiosity, and finding ways to use his considerable gifts against the odds of both the disease and the prejudice it bred.  One of his strategies is the inventive, cryptic, poetic, Joycean idiom in which he writes his story.  He did, in fact, succeed in a school where he was accepted as a kind of experiment, in an area of Ireland not known for its progressive attitudes.  In this narrative he moves back and forth between inner life, family life, and life at school, allowing readers to get to know him as a deeply reflective, adventurously social, and courageous human being, living with his debilitating condition with a degree of consciousness that took full account of the losses as well as finding avenues of expression that allowed him, intellectually, at least, full range of motion.  The narrative takes us through his school years where he distinguished himself as a poet and also as a human being for whom life with a disability shaped an extraordinary dexterity with language.

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This Far and No More

Malcolm, Andrew

Last Updated: Sep-12-2012
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Biography

Summary:

Emily Bauer, mother of two small children, psychotherapist and teacher, social, smart, athletic, and strong-willed, finds, after a curious series of falls and other accidents, that she has ALS, "Lou Gehrig's Disease," a disease that involves slow atrophy of all muscular control, leading to complete paralysis and then death.  The disease is relentless, and treatments palliative at best. 

First in handwriting and later by means of a tape on which she can type, letter by letter, by moving her head to press a button as a cursor cruises through the alphabet, she keeps a diary up until just days before her death.  The diary, a remarkable record of her physical and emotional fluctuations, includes stories she laboriously writes for her daughters that gently mirror the confusions they encounter coming to see a profoundly disabled mother who can no longer hold them or speak to them.  The story culminates in Emily's plea for someone to turn off the ventilator that is keeping her alive, and the efforts her husband makes with the help of a meticulous and sympathetic lawyer and a courageous doctor to arrange for a voluntary death.  

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The Dark Light

Newth, Mette

Last Updated: Aug-30-2012
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel for Young Adults

Summary:

Tora lived happily on a mountain farm in Norway until her beloved mother's death  and her own subsequent diagnosis with leprosy, an illness common in early 19th-century Norway and one that drove her mother to suicide.  Upon diagnosis (at the age of 13) she is taken to the leprosarium in Bergen, from which very few emerge.  Most are left there by families whose fear of the disease leads them to abandon even much-loved children, parents, and spouses.  There, despite the misery of living among many who consider themselves the living dead, she finds a friend in Marthe, the chief cook and general caregiver, a woman of almost boundless kindness; and the "Benefactor," a pastor who is remarkably unafraid of the disease from which most flee, and who befriends Tora as she grows into an unpromising early adulthood.  Another unlikely friend is a noblewoman who has languished, embittered, behind a closed door with a trunk full of her old gowns and several cherished books, including the Bible, The Divine ComedyGulliver's Travels, and a popular Norwegian epic about the adventures of Niels Klim at the center of the earth.  She gradually softens toward Tora, who cares for her tenderly as the older woman teaches her to read.  Reading becomes not only Tora's consolation, but that of many of her fellow inmates.  Near the end of her own short, but surprisingly rich life, Tora's father shows up after years of neglect.  Forgiving him, almost against her will, she reaches a new level of acceptance of her own mysterious fate.  The book includes a short afterword about the actual leprosarium in which the story is situated and about Gerhard Armauer Hansen who in 1873 discovered the bacillus responsible for leprosy, the first bacterium proved to be the cause of a chronic human disease.

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For the Love of Babies

Last Updated: Aug-30-2012
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Collection (Case Studies)

Summary:

In this collection of "clinical tales," to use Oliver Sacks' term, Sue Hall, an experienced neonatologist who spent some years as a social worker before medical school, tells a remarkable range of stories about newborns in the NICU and their parents.  As memoir, the stories record moments in a life full of other people's traumas, disappointments, anxieties, and hard-won triumphs where her job has been to hold steady, find a balance point between professionalism and empathy as young parents go through one of the hardest kinds of loss.  Each story is told with clarity and grace, sketching the characters deftly and offering useful medical information along the way on the assumption that many who read the book will do so because they are facing similar challenges and decisions.  Each story is followed by a two- to three-page "Note" giving more precise medical background and offering further resources for those who have particular interest in the kind of case it was. 

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The Sickness

Tyszka, Alberto

Last Updated: Aug-23-2012
Annotated by:
Miksanek, Tony

Primary Category: Literature / Fiction

Genre: Novel

Summary:

It started with a faint. Javier Miranda, a generally healthy 69-year-old man living in Venezuela, attributes his episode of dizziness to the summer heat and humidity. His only child, Andres Miranda, is a physician whose intuition tells him something is seriously wrong with his father. The doctor obtains blood work and schedules a CT scan and MRI of the brain for Javier. The medical work-up reveals rapidly progressing lung cancer with metastases to the brain. Violating his credo of complete honesty with patients, Dr. Miranda lies to his father and reassures him instead. Dr. Miranda's mother died when he was just 10 years old. Now his father's remaining lifespan has dwindled to a couple of months. The doctor must find a way to break the bad news to his dad.

Meanwhile, Dr. Miranda receives multiple messages - phone calls, e-mails, and letters - from a difficult and persistent patient. Ernesto Duran suffers from dizzy spells and multiple other symptoms. It could be panic disorder or maybe Ernesto is a hypochondriac. Dr. Miranda instructs his office secretary, Karina, to deal with these communications and remind the patient that there is nothing more that can be done for him. When Ernesto admits he is stalking the doctor, Karina worries. Pretending to be Dr. Miranda, she begins corresponding with Ernesto via e-mail. Before long, Karina develops symptoms similar to Ernesto's and experiences empathy for him.

When his physician-son finally summons the courage to announce the terminal diagnosis, everything changes for Javier - his mood, personal relationships, and awareness of his body's metamorphosis. He perceives the smell of rot associated with his physical deterioration. Dr. Miranda's frame of mind also changes as he copes with his father's impending death. Javier's deathbed request is simply for his son to shatter the terrible silence by talking about the two of them.

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Eye Contact

McGovern, Cammie

Last Updated: Aug-23-2012
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Adam, nine and diagnosed with autism spectrum disorder, wanders into the woods outside his schoolyard with a new friend, Amelia, who is ten and diagnosed with pervasive developmental disorder.  Worried parents and teachers wait until the police discover Amelia's body with a stab wound and retrieve Adam unharmed.  Adam, unable to communicate very directly with anyone, inadvertently provides key clues to solve the mystery, which involves an old friend of his mother's, confined to a wheelchair since an accident he suffered in elementary school.   In the course of recovering from the trauma the whole community is changed, and Adam finds a new friend who will very likely be able to cross bridges into his world and accompany him on his mysterious journey for a long time to come.

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House Rules

Picoult, Jodi

Last Updated: Aug-19-2012
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Jacob, a teen with Asperger's syndrome, has long been obsessed with the details of crime scenes and crime detection.  He tends to show up when local crimes are reported, and is sometimes able to offer unnerving insights to forensic analysts.  He works closely with an empathetic, intuitive young woman tutor whose controlling boyfriend has more than once tried to taunt Jacob out of her life, but she and Jacob have a strong, healthy connection that ridicule can't touch.  When she is found murdered, Jacob becomes a suspect, partly because of his proximity to the crime, and partly because the symptoms of Asperger's-avoiding eye contact, twitching, and hesitant or repetitive speech-resemble guilty behavior.  Though he has valuable information to offer as to who actually committed the crime, the process of making himself heard by those disinclined to take him seriously and uninformed about his syndrome, takes time, during which the disrupted lives of those around Jacob, especially his mother, become stories in their own right.

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Annotated by:
Duffin, Jacalyn

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

The Hawaiian lawyer Matt King (George Clooney) has two big dilemmas. His large, extended family is thinking of selling their inherited 25,000 acres to a developer—and he must help the consortium decide what to do for the benefit of all. Worse, his wife Elizabeth is in a coma on life support following a severe injury from water skiing. He is trying to parent their two daughters, aged 10 and 17, but the girls are unruly and sulky. He thinks that they are acting out because of their mother’s absence.

The doctors tell Matt that Elizabeth will never recover. According to her living will, she does not want to be left on a machine; they must pull the plug. Matt confides in the older daughter who then informs him that Elizabeth had been having an affair. Her sullenness is sublimated anger with her mother for—among other things—how Matt had been treated. Other family friends know of the infidelity and identify the lover as Brian Speer (Matthew Lillard) a real estate agent living on Kaua’i.

Amazed by his wife’s secret, Matt overcomes his sense of betrayal and resolves to respect her feelings, find the lover and give him a chance to say goodbye. The little family flies to Kaua’i looking for Brian and to deal with the sale of the family estate.  Matt meets Brian’s beautiful wife Julie– who is sympathetic to his situation, not knowing of the connection with her husband. When Matt confronts Brian, he is surprised that Brian has no interest in saying good-bye to Elizabeth. What, for Elizabeth, had been a life-changing relationship, for Brian, was a fling that “just happened” and which he wants to forget. He is terrified that Julie will discover his infidelity and leave him.

Matt contends that “things do not just happen.” Everything happens for a reason. Wondering what his own role had been in Elizabeth’s reasons for taking part in the affair, Matt goes home for her death. But he also decides not to sell the family estate and keep it as a nature preserve over the opposition of many cousins.  Brian never appears, but Julie has learned of his infidelity and she comes to the hospital out of duty and horror. It is not clear if her marriage will survive.

In the final scene, Matt and his daughters are in a little boat off Waikiki where they spread Elizabeth’s ashes.

 

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Illness as Narrative

Jurecic, Ann

Last Updated: Jul-03-2012
Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Criticism

Summary:

In Illness as Narrative, Ann Jurecic thoughtfully examines the unruly questions that personal accounts of illness pose to literary studies: What is the role of criticism in responding to literature about suffering?  Does the shared vulnerability of living in a body, which stories of illness intimately expose, justify empathic readings?   What is the place of skepticism in responding to stories of suffering?  Does whether or how we read illness narratives matter?  Jurecic's questions entice discussion at an interesting cultural moment.  The numbers of memoirs and essays about illnessand their inclusion in medical school and other humanities coursesmultiplied from the later decades of the 20th century to the present.   However, their increase, and their potential to encourage empathic readings, coincided with dominant literary theories that advocated vigorously skeptical, error-seeking responses to texts and their authors.  Jurecic reminds us that Paul Ricoeur called such responses "the hermeneutics of suspicion" (3). 

Jurecic's astutely researched, nuanced answers to those questions propose a corrective to the extreme skepticism of "disembodied criticism." Such criticism, she claims, dismisses testimonial writing from "a position of distance and privilege."  But her answers also affirm that intellectually "rigorous" responses to texts are central to the critical humanities (15).  To further her position, she offers attentive readings of accounts of illness by Virginia Woolf, Reynolds Price, and Jean-Dominique Bauby, as well as the theoretical writing of literary and other scholars.  For instance, Jurecic speculates that the condition of a reader's body aligns with his or her responses to texts.  In a chapter called "Theory's Aging Body," she observes that as skeptical scholarly readers ageStephen Greenblatt, Michel Foucault, Judith Butlerthey have turned their attention to "illness, vulnerability, and mortality" (93).  Jurecic also suggests that a function of criticism is to uncover the cultural conditions that memoirs and essays about illness respond to.  Living "at risk" is a recent one.  In stories of living with the risk of experiencing a particular illness in the future, potential patients create narratives of uncertainty to discover the "personal meaning of the impersonal statistics" that medical research now regularly delivers (18). 

 Jurecic also reflects on the ways theorists have understood the possibilities of representing and responding to pain in the varied approaches of philosophers Elaine Scarry, Martha Nussbaum, and Richard Rorty and of anthropologists Jean E. Jackson, Byron Good, and Veena Das.  In an exceptionally comprehensive and nuanced reading of Susan Sontag's theoretical, fictional, and journal writing about suffering, Jurecic uncovers Sontag's inconsistent, yet revelatory positions on the human capacity for responding to representations of pain.  The chapter on Sontag is enriched by Jurecic's reading of Annie Lebovitz's and David Reiff's responses to Sontag's suffering: in Lebovitz's controversial photographs of Sontag's final days (included in A Photographer's Life: 1990-2005) and Reiff's memoir about his mother's illnesses (Swimming in a Sea of Death). 

Illness as Narrative closes with examples of what Jurecic calls reparative writing and reading practices.  In the first instance, ill writers such as Jean-Dominique Bauby (The Diving Bell and the Butterfly) both recreate "a more coherent sense of themselves" and dislodge "fixed ideas and narratives" about illness (109).  In the second instance, Jurecic outlines the limits of two competing readings of Anne Fadiman's The Spirit Catches You and You Fall Down.  One assumes that readers will by nature empathically imagine those who are culturally different from themselves.  The other looks skeptically at the assumption that what medical educators call cultural competence can be acquired by reading a book.  Jurecic suggests that strategies for reading and teaching informed by Janelle S. Taylor, Eve Kosofsky Sedgwick, and Rita Felski can encourage more complex habits of response, such as Taylor's "'empathic curiosity'" (quoted 122).

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