Showing 111 - 120 of 680 annotations tagged with the keyword "Illness and the Family"

Tinkers

Harding, Paul

Last Updated: Jul-06-2010
Annotated by:
Miksanek, Tony

Primary Category: Literature / Fiction

Genre: Novel

Summary:

George Washington Crosby is dying from kidney failure. The eighty-year-old man has a crumbling body - Parkinson's disease, cancer, diabetes, and previous heart attacks - and a murky mind. He is hallucinating and his memories are disordered. George occupies a hospital bed in the living room of a house that he constructed himself. His family keeps him company as they await his imminent demise.

Some of George's thoughts revolve around his passion for clocks and his skill in repairing them. Most of his memories center on his father, Howard Aaron Crosby. About seventy years earlier, Howard owned a wooden wagon and a horse and scratched out a living as a tinker and a peddler of household goods. Howard's father had been a Methodist minister who exhibited worsening signs of mental illness. The man was eventually escorted out of his home. Only a young boy at the time, Howard would never see his father again.

Howard suffered from frequent and violent epileptic seizures. His wife and the family doctor thought Howard should be admitted to the Eastern Maine State Hospital, an institution housing feebleminded and insane individuals. Howard had a different opinion. One evening, he left his wife and four children and headed to Philadelphia. He took a new name and a new wife. He found work in a grocery store. The frequency of his seizures decreased dramatically.

George's final memory before death is a vivid one. He recalls a Christmas dinner in 1953. Someone is at the door. It is a surprise (and brief) visit by Howard to George's house. It is the first time that he has seen his father since George was twelve.

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Annotated by:
Schilling, Carol

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Extraordinary Measures, based on events in the life of John Crowley and his family, dramatizes the father's quest to find a cure for Pompe disease, a relatively rare genetic condition that afflicts two of his three children.  The quest brings into play three powerful, often competing human motives:  a father's love for his children, a scientist's pursuit of knowledge and recognition, and a corporation's mandate for profits.  Crowley (Brendan Fraser), an energetic marketing executive, and his wife Aileen (Keri Russell) are told that their children Megan (Meredith Droeger), age eight, and Patrick (Diego Velazquez), age six, have reached the upper limits of their life expectancies.

When Megan, an affectionate, playful, and clear-sighted child, is rushed to the hospital with symptomatic heart and respiratory failure, a young physician empathically encourages the parents to think of their only daughter's immanent death as a "blessing" that will end her suffering.  However, Megan survives.  "So I guess you could say we dodged that blessing," Crowley echoes back to the doctor.  Seeing Megan's will to live reinforces John's wish to make her well, and he abruptly abandons his promising career to find a medical researcher who can reverse Pompe's effects. 

Immersing himself in medical journals and websites, John discovers the intriguing research of Robert Stonehill (Harrison Ford).  A cranky, renegade scientist who thinks to the beat of rock music blasting from a boom box, Stonehill has developed a cutting-edge theory about correcting the enzyme deficiency in the cells of people with Pompe, which gradually weakens skeletal, respiratory, and heart muscles.  However, to produce a treatment derived from his theory, he needs more funding.  John immediately creates a fund to support Pompe research, and he and Stonehill form a mutually exasperating partnership.  They lock horns with each other, venture capitalists, and finally a large genomic research corporation, Zymagen.

Despite the scientist's abrasive ways, Zymagen gives Stonehill a lab and creates employment for Crowley.  However, the two confront the company's culture of rigorous competition among its scientists and its focus on profit margins that ignore the fates of individual children.  When the Zymagen scientists develop a promising therapy, they decide to offer the treatment only to infants, who are most likely to experience benefits.  Disqualifying Crowley's children from the promising trials, this decision, combined with Crowley's obvious conflict of interest, creates the film's final obstacle.  Stonehill and the executives uncharacteristically collaborate to overcome it. 

This ending might seem implausibly neat, but it's consistent with the film's mostly evenhanded approach to the dilemmas of pursuing treatments for orphan diseases.  Toward the end, we witness even Crowley, albeit uncomfortably, reaching beyond his fatherly motives for the Pompe project and turning his argument for bringing the treatment to market from children to profits.  The longer the patients live, John assures the executives, the more treatments Zymagen will sell.  The film leaves space for viewers to ask to what extent Crowley's argument creates a fair compromise or opens an ethical quandary.  In a closing narration, the film moves beyond the fictionalized characters and plot to the real Crowley children and a tempered victory.  Yes, the Pompe treatment stopped the progression of the disease and improved Megan's and Patrick's hearts.  But it has not cured the Crowley children, and almost certainly it won't.   The treatments do, however, show more success when taken at the onset of symptoms.      

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Summary:

Sixty-year old Martha DeClerq cares for her mentally disabled sister, Pauline (Dora van der Groen), in a small town between Brussels and the seaside. Pauline cannot feed herself, tie her shoes, or speak in full sentences; she is stubborn, loving, occasionally mischievous, and particularly devoted to her sister, Paulette (Ann Petersen), who owns a small, tidy shop in town. Cecile (Rosemarie Bergmans), the youngest sister, lives in Brussels with a French intellectual, Albert, and has little contact with her siblings.

When Martha dies, her will stipulates that her estate be split equally between the three sisters, only if Paulette and Cecile care for Pauline themselves. They agree to share Pauline’s care. Although the sisters are fond of Pauline, their relationship with her is awkward and tentative. Initially, Paulette brings Pauline home, and they negotiate the new living arrangements with a mixture of embarrassment and kindness, frustration and delight. When the burden of caring for her sister becomes overwhelming, Pauline is deposited in Brussels at Cecile’s tiny, meticulously kept apartment. When these arrangements become unworkable, Pauline is eventually institutionalized.

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Amazing Change

Carroll, Robert

Last Updated: Jun-04-2010
Annotated by:
Coulehan, Jack

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

In his preface to Amazing Change, Robert Carroll speaks directly about the power of poetry to heal. At a time of great personal loss, he says, "I began writing as a way of dealing with the inchoate, yet overwhelming, feelings I was experiencing... hopefully, to facilitate a healing process for myself." The poems collected in Amazing Change, which bears the subtitle "Poetry of Healing and Transformation: The Wisdom That Illness, Death and Dying Provide," reveal the depth and power of that healing process. They show the reader that poetic healing not only engages a person in self-discovery, but also in sharing that discovery with others. Wholeness is a community project.

While Amazing Change deals with serious subjects, many of the poems approach the subjects with humor and a light touch of irony. This is particularly true in "Dr. Bob's Psychomedical Poetics--Infomercial 1" (pp. 78-80) and "Dr. Bob's Psychomedical Poetics--Infomercial 2" (pp. 109-111). "Spiritual Soup" (p. 93) is another example of the value of humor in the good life, along with other core ingredients like marriage, prayer, hospitality, blues, hope, and pot luck.

Among the finest poems in this collection is "Kaddesh for My Father" (pp. 47-53). Written in filial homage to the poet's father, in artistic homage to Allen Ginsberg, and in spiritual homage to the Judaic tradition, "Kaddesh for My Father" seamlessly integrates personal detail and anecdote about his father with ritualized expressions of prayer and emotion.  In this and many other poems, Carroll employs poetic form and/or historical exemplars to enhance the meaning of his work, but never allows them to constrain or dilute his personal vision.

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Autism and Representation

Osteen, M., ed.

Last Updated: Jun-02-2010
Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Anthology (Essays)

Summary:

The book's chapters derive from a conference entitled "Representing Autism: Writing, Cognition, Disability" held in 2005. Contributors are scholars of English, communication studies, psychology, and other disciplines; some are on the autism spectrum themselves or are parents of autistic people. The book attempts to address what editor Mark Osteen in his introduction cites as a deficit in the field of disability studies, namely that the field has ignored cognitive disabilities. Osteen notes that autism is a spectrum not only among people but within individuals: "any given autistic person's abilities will occupy different locations on [the spectrum] at different times" (7) but a severely autistic person is not merely "different." The editor also addresses the question of self- representation, arguing that "we must strive to speak not for but with those unable or unwilling to communicate through orthodox modes" (7).

The book is divided into four sections: Clinical Constructions, Autistry, Autist Biography, and Popular Representations. Clinical Constructions includes a chapter on Virginia Axline's work with the boy, Dibs (see Dibs: In Search of Self in this database), a child who is now thought to have been autistic; and a chapter on how Bruno Bettelheim convinced the world of science and the public that autism was caused by parental behavior, especially that of mothers ("refrigerator mothers") and that he knew how to cure it. The essayists show how these two psychologists constructed a persona of omnipotence that enabled them to appear to "save" autistic children. Chapter 3 reviews the history of autism as a named condition and contextualizes it.

Chapters in the section on Autistry discuss the mental world of people with autism. Patrick McDonagh (chapter 4) postulates that "the capacity to perceive autism in the 1940s may be connected to the proliferation of modern, and modernist, notions of the self" (102) -- for example, isolation and alienation, and "the removal of referential and conventionally communicative functions from language" (111) that appear in the works of Gertrude Stein, Virginia Woolf, James Joyce. Subsequent chapters apply theories of information processing (chapter 5), metaphor and metonymy (chapter 6), and narrative (chapter 8) to an understanding of the mental world of autistic individuals, and chapter 7 discusses poetry written by autistics.

The section on Autist Biography concerns memoirs written by parents of autistic children. Deborah Cumberland contrasts the memoirs of several mothers with one written by a father (chapter 9) and Sheryl Stevenson (chapter 10) writes about the rhetorical strategies that mothers use "to negotiate contradictions of motherhood that are exacerbated by autism and their own privileged abilities" (199).

The essays in the section, Popular Representations, concern several films and Mark Haddon's novel, The Curious Incident of the Dog in the Night-Time (see annotation). Anthony Baker presents an "autistic formula" used in films and notes that the plots hinge on the way a central character who is not autistic uses the "special powers" of the autistic character, thereby robbing the latter of agency (Chapter 12). Stuart Murray is also critical of how films portray autistic people (Chapter 13). Phil Schwarz, father of a child with Asperger's and an Asperger's adult himself writes about four films ( Thirty-Two Short Films About Glenn GouldSmoke Signals, Breaking the Code, The Secret of Roan Inish) he uses to raise the consciousness of autistic peers and to promote self-esteem in the face of society's attitudes toward autistic individuals (Chapter 14).

The authors of chapters 15 and 16 come to different conclusions about the novel, The Curious Incident of the Dog in the Nighttime. Gyasi Burks-Abbott, "a 34 year-old African-American male on the autism spectrum" (303), criticizes the novel for perpetuating stereotypes and for "relegat[ing] the autistic to otherworldliness while establishing a non-autistic author like himself as the necessary medium between autistic and non-autistic reality" (295). James Berger, on the other hand, argues that Haddon uses the protagonist Christopher to "explore questions about language and social relations" (fn1, 286) and observes that Haddon understands human neurological features as a continuum.

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Annotated by:
Davis, Cortney

Primary Category: Literature / Literature

Genre: Anthology (Mixed Genres)

Summary:

In 2008, editor and physician Paul Gross launched a new online publication, "Pulse--voices from the heart of medicine" (published by the Department of Family and Social Medicine, Albert Einstein College of Medicine and Montefiore Medical Center). This anthology contains every poem and first-person narrative published during Pulse's first year, arranged in five sections corresponding to publication date and not to theme: Spring, Summer, Autumn, Winter, and Spring.  Paul Gross, in his introduction, states "After more than a decade of practice as a family doctor, I came to appreciate that the science I'd learned in medical school, though powerful and useful, was also incomplete . . . . it contained much truth about illness and healing, but not the whole truth" (xvii).  Like many other caregivers, Gross discovered "that writing and sharing my healthcare stories with others was therapeutic" (xviii).  He looked to "Sun Magazine" as an example of how first person narratives, both prose and poems, could turn "hurts and triumphs into something potentially beautiful, funny or moving" (xviii). 

The poems and prose that arrive every Friday online to Pulse's thousands of subscribers (and the selections in this anthology) are carefully screened by the editors according to these guidelines: the stories have to be first-person, and they have to be true, recounting the writer's own experience.  Submissions are accepted from any person involved in healthcare.  The language used must be "clear, simple language.  No medical jargon. No arcane literary devices" (xx).  Gross and his editors decided that Pulse would not be a medical journal nor a literary magazine--its purpose fell outside the perimeters of both genres--and so Pulse, and this anthology, offers work that is, in a refreshing and honest way, different from the slick or more polished poetry and prose that might be found elsewhere.

In reading this anthology from cover to cover, and so from season to season, I found that the poems and prose seemed to fall into several categories: Personal musings, in which authors relate healthcare experiences that engender intimate and revealing narratives about their own lives--among the best of these are "Well Baby Check," p.3; "Finding Innisfree," p. 31; "First Patient," p. 39; "Losing Tyrek," p. 45; "Carmen's Story," p. 62; and "Chemo? No Thanks," p. 106.  Other pieces are commentaries on the other side of healthcare, the one that cries out for reform and affects both patients and caregivers.  Among the best of these are "Redesigning the Practice of Medicine," p. 9; "A Brush with the Beast," p. 22; "Rx," p. 60; "Halloween Horrors," p. 69; and "Brain Cutting," p. 136.

Other pieces are humorous ("Aunt Helen Sees a Ghost," p. 6) or political ("My War Story," p. 11), and many poems and prose pieces speak of patient encounters or about being a patient, some more anecdotal, relating a specific incident that affected the author ("Once," p. 41) and others multi-layered, some relating medical student or intern experiences ("Jeannie," p. 48; "A View from Nepal," p. 87; "Ripped from the Headlights," p. 90; "Snowscape," p. 97; "First Night Call," p. 100; and "Wounded Messenger," p. 114.)  The "category" I found most interesting and most unique are the selections I will call "confessions."  These writings--demonstrating openess and bravery on the part of the authors--tell of regrets, mistakes, sorrows, wrong calls and other mishaps that occur, daily, in the practice of healthcare.  In these, the most human face of caregiving is revealed.  Although most of the pieces in this anthology contain elements of "confession," the most specifically revealing include "Mothers and Meaning," p. 14; "Physician's Exasperation," p. 44; "Confidential," p. 53; "My Patient, My Friend," p. 73; and "Apologies," p. 104.

Editor's note: Coincidentally, a recent relevant paper on confessional writing by physicians expounds further on this topic:"Bless Me Reader for I Have Sinned: physicians and confessional writing" by Delese Wear and Therese Jones (Perspectives in Biology and Medicine, Vo. 53, No.2, Spring 2010, pp. 215-30).

 

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Annotated by:
Duffin, Jacalyn

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

In 1818, the newly trained physician, John Keats (1795-1821) (Ben Wishaw) is living with his well-off friend, Charles Brown (Paul Schneider), and they are trying to devote themselves to the art of writing. Keats cannot abide the idea of having to practice medicine. 

The uneducated, fashion-conscious Fanny Brawne (Abbie Cornish), notices Keats, moved by the care that he bestows on his dying brother. She offers a gift of a beautifully embroidered pillow, which soon finds it way into the lad’s coffin.

Affected by the young man’s death and the mystery of poetry, Fanny flings herself at Keats, undeterred by Brown’s open disapproval of her lack of class, education and bearing. Flattering his work, she asks Keats for lessons in literature and then reveals herself to a reasonable judge of poetry. In spite of himself Keats is drawn to her and declares his love.

But the poet’s health is fragile. Funds are raised to send him to Italy, and Keats announces that he must go, because his friends have decided. He seems to know that he will die. Fanny is brave and hopeful. Chastened, Charles Brown comes to Fanny’s home to announce the death of Keats in Rome.

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Summary:

This book is exactly what it claims to be in the title. Dr. Ofri gives us fifteen clinical tales, each of which describes a lesson she has learned from a patient or from her own experience as a patient. It is an extension of her first book, Singular Intimacies: On Becoming a Doctor at Bellevue (see this database) and relates to her experiences after she completes residency training at Bellevue Hospital in New York City, to which she eventually returns as a staff physician. Three of the stories are examples of how a physician experiences the patient role, including one in which she relates an early personal experience to that of a patient she cares for ("Common Ground").

Since Ofri served as several locum-tenens, some of the stories take her to rural communities and small towns but most concern experiences with patients at Bellevue in clinics or in the hospital. She also discusses the challenges and limitations of teaching the next generation of doctors at Bellevue ("Terminal Thoughts").

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Invisible Sisters: A Memoir

Handler, Jessica

Last Updated: Apr-24-2010
Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The author of this memoir creates a generally temporally sequential tale of the trials of a family fraught with a series of personal tragedies.  The tale is told by Jessica, the eldest of three daughters.  One of her sisters (Sarah) has a rare genetic disorder which affects the daily life of the family as she requires significant medical attention over the nearly three decades of her life.  Into this demanding  drain   on the young family comes the totally unexpected diagnosis of acute lymphocytic leukemia leveled at the youngest sister (Susie).  Susie becomes acutely ill and over a short period of time, dies.

The reader then enters the drama of the dissolution of the family: a father who becomes dysfunctional and unable to assist and a mother who must pick up the remnants and move on with the surviving siblings.  Sarah and Jessica  move forward and live lives into their young adulthoods.  Then, suddenly, Sarah dies.  The remainder of the tale has to do with the author's assessment of the past and of her future.

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Annotated by:
Wear, Delese

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Wasted is the story of a young woman, now in her early twenties, that recounts her fourteen years spent "in the hell of eating disorders," having been bulimic by the age of nine, anorexic at fifteen. The book is also a chronicle of her six hospitalizations, one institutionalization, relentless therapy, the back and forth between being "well" then "sick" then "well" then "sicker." The author dismisses most common notions of persons with eating disorders, instead revealing a complex set of causes, some familial, some cultural, some wedded to her own personality.

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