Showing 51 - 60 of 684 annotations tagged with the keyword "Illness and the Family"

Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

Carol Levine began a roiling odyssey as a caregiver when a car accident left her husband paralyzed and in need of 24-hour care. She regards her husband’s survival as “a testament to one of American medicine's major successes — saving the lives of trauma patients.” But once he returned to their home, Levine encountered a healthcare system that was fragmented, chaotic, and inequitable. Unprepared to address chronic care, it remained oblivious to her needs as her husband’s primary medical “provider,” as they would say. Written nine years after the accident and eight years into her care giving, Levine’s essay recounts the stress and isolation she experienced attempting to navigate that system, to perform unrelenting chores, and to sustain her employment. Her job was, after all, the source of her husband’s managed care insurance, which regularly managed to leave Levine with unpaid bills. Even her work in medical ethics and healthcare policy could not help her locate the assistance she needed to assure the well being of her husband or herself.  Or of other care-giving families.

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Summary:

This anthology is a sequel to Pulse: The First Year (2010). Both anthologies are comprised of postings to the website “Pulse: voices from the heart of medicine,” an online publication that sends out short poems and prose pieces every Friday. As the website subtitle suggests, the topics are from the medical world, the writing is personal (not scientific), and the writers give voice to feelings and perceptions from their direct experience as care-givers, patients, or family members of patients. All the pieces are short (typically one to five pages), usually with a tight subject focus. For example, in "Touched," Karen Myers reports how massage has helped her muscular dystrophy. 

The postings in the second anthology originally appeared from April 2009 through December of 2010. Because the 87 pieces appear in the order they were published, they don’t have linear coherence. Therefore the editors of have thoughtfully provided four indices in the back of the book: by author, by title with summaries, by healthcare role, and by subject/theme.

Prose pieces vary widely in style and technique. The poems are almost all free verse, although some poets have used regular stanzas. “Depression Session,” (p. 157) is an 18-line poem by a physician about a difficult mental patient. Many of the pieces explore the intensity of medical subjects with impacts on doctor, patient, and/or family. Some of them show limits of medicine. “Pearls before swine” (p. 191) relates the experience of a third-year medical student in a rotation at the office of a racist and sexist physician. “Babel: the Voice of Medical Trauma” (p. 158) dramatically tells the story of a poorly handled birth at a hospital.  

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Summary:

Carol Levine's anthology of stories and poems about the intimate caregiving that takes place within families and among friends and lovers reminds us that the experience of illness reaches beyond clinicians and patients. It can also touch, enrich, and exasperate the lives of those who travel with patients into what Levine calls the land of limbo. This land oddly resembles the place where some Christian theologians believe lost souls wander indefinitely between heaven and hell. For Levine the limbo of familial caregiving is an unmapped territory. In it caregivers perform seemingly endless medical, social, and psychological labors without professional training and with feelings of isolation and uncertainty. Caregiving in this modern limbo, created by contemporary medicine's capacity to extend the lives of those with chronic conditions and terminal illnesses, has become, according to Levine, "a normative experience" (1).

By compiling this useful selection of well known and less familiar stories and poems, Levine increases the visibility of the experience of familial caregiving among works of literature about medicine. While illness literature is typically classified by disease or disability, Levine focuses instead on the relationships between caregivers and those being cared for. Her collection organizes the literature into five parts: Children of Aging Parents; Husbands and Wives; Parents and Sick Children; Relatives, Lovers, and Friends; and Paid Caregivers who assist families. The literature in each section tends nonetheless to represent particular conditions: dementias, including Alzheimer's disease, cancer, and frailty in the first two sections; childhood cancer, hyperactivity, and mental illness in the third; AIDS in the fourth. 

Probably the most familiar and powerful works include Rick Moody's "Whosoever: The Language of Mothers and Sons," Ethan Canin's "We Are Nighttime Travelers," Alice Munro's "The Bear Came over the Mountain" (the source for the film "Away from Her"), Lorrie Moore's "People Like That Are the Only People Here," and several poems: Mark Doty's "Atlantis" and selections by Donald Hall, Jane Kenyon, James Dickey, and Raymond Carver.

These and the less familiar works offer disparate responses from both caregivers and those they care for. The narrator of Tereze Gluck's "Oceanic Hotel, Nice" thinks "what a bad person I was to not even want to touch his feet. . . it made me shudder" (220). The wife in Ann Harleman's "Thoreau's Laundry" cannot place her husband with Multiple Sclerosis in a nursing home because "his presence, however diminished, was as necessary to her as breathing" (116). The caregiver in "Starter" by Amy Hanridge "didn't want to be the person people feel bad about" (180).  Several stories explore the limits of obligation. As is often the case, the son in Eugenia Collier's "The Caregiver" is sick himself, failing to schedule his own doctor's appointments and dying before his mother. Marjorie Kemper's witty, exuberant "God's Goodness" plays out an unexpected relationship between a dying teenage boy and his Chinese immigrant aide, while his parents remain in the background.

Carol Levine's brief introduction to the collection explains that she excluded excerpts from memoirs and selected only very recent literature, almost all from the past three decades. A Resources section at the end includes some introductory medical humanities resources and practical resources for caregivers.

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On Bittersweet Place

Wineberg, Ronna

Last Updated: Nov-18-2014
Annotated by:
Nixon, Lois LaCivita

Primary Category: Literature / Fiction

Genre: Novel

Summary:

This story centers on Lena, an immigrant teen from Ukraine, whose entire family has been traumatized and uprooted by family deaths during a violent pogrom.  Relocated to Chicago, in a tiny apartment on Bittersweet Place, the family struggles to survive in the years prior to World War I. Wineberg’s tale of disrupted life and resettlement is weighted by formidable issues that stretch beyond the ordinary range of family experiences. 

Lena, the intelligent, highly observant and resilient adolescent, narrates an unvarnished tale of survival for the extended family clustered together in this strange new world, but especially for herself.  While the family’s economic and financial circumstances are difficult, her own life is made worse by an unkind teacher, mean-spirited classmates, and hormonal impulses.  Her uncle touches her inappropriately, a favorite uncle goes mad, a cousin dies, and her mother, who is unfamiliar with the new world setting and mores, drives her crazy. 

Nevertheless, Lena is a clear-eyed survivor exhibiting a surprising toughness of character and determination. For example, her introduction to sex is far more direct than might occur with most girls of that time.  In addition, when her teacher fails cruelly to support her artistic talents, she shows amazing defiance.   When she discovers that her father has a beautiful female friend, undoubtedly a lover, her consideration of this circumstance does not render the crushing blow that might be expected.  In retrospect she is more adult, more mature than most young women might be in each of these situations.  She is a remarkable young woman with a spirited edge.

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Annotated by:
Nixon, Lois LaCivita

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Although Dr. Helman’s untimely death did not permit a final editing by this prodigious writer, the published edition is not a book-in-progress. An Amazing Murmur of the Heart: Feeling the Patient’s Beat represents a powerful and persistent continuation of observations and themes that grew out of medical education, close observations of physicians and patients, and his studies in anthropology. All of these forge an approach to patient care that is out of the ordinary.  

As his previous writings suggest, Helman is passionate about medicine but concerned, equally about the emergence of those who fail to listen and to those who might be called techno-doctors.  While professing his appreciation of and attraction to the magic machine or computer, he is mindful of its absence of emotion and ambiguity.  “For this post-human body is one that exists mainly in abstract, immaterial form.  It is a body that has become pure information.” (p. 11)

Chapters are comprised of stories about patients and their care providers, each representing complex facets that defy precise measurement, answers and conclusions.  As Helman steadily notes, the physician must be an archeologist:

Most patients present their doctors with only the broken shards of human life—the one labeled infection, disease, suffering and pain each of these shards is only a small part of a much larger picture….the doctor will have to try and reconstruct the rest. (p.66)

In general, the chapters illustrate first an initial review of medical history, and then specific patient stories.  Of the two, the story is most important.  “Mask of Skin,” for example, begins with an overview of skin from Vesalius to the present: largest organ, stripped bare by anatomists, penetrated by disease, later scanned and X-Rayed, tattooed, re-fitted by surgeons, etc.   That said, Helman the physician-anthropologist, moves from science to specific stories about patients whose skin may cover profound experiences, psychic and otherwise, that might be overlooked by a dermatologist.   Although skin is involved in each of that chapter’s stories, the willing physician must dig deeper in his observations and caring manner to make more profound discoveries.      

In a chapter entitle “Healing and Curing” the author describes an old friend, a practitioner who provides advice about patient care that ”was not included in his medical texts”.  Patients are more than a diagnosis dressed in clothes.  Doctors must make patients “feel seen, listened to, alive”.  Always patients should be regarded as people who happen to be sick.  From his admired colleague Helman learned to be an attentive listener  to the "tiny, trivial, almost invisible things" in patient encounters and stories. To truly heal as well as cure requires the doctor to empathise with what the patient is feeling thereby requiring both an act of imagination and of the heart.  The chapter, of course, continues with with stories that illustrate the points enunciated by his colleague and accepted by his disciple. 

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Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

In the course of sharing her own experience of breast cancer diagnosis and treatment, the writer offers personal reflections on coping with each of a number of specific challenges most American women with breast cancer face:  desperation, fear, sadness, anger, guilt, overwhelming choices about treatment, side-effects of treatment, grief, adjusting to a new "normal," shifts in relationship, and rethinking spirituality.  She raises hard questions in a compassionate way, encouraging readers to use the experience of illness as an occasion for examining and growing into a new phase of psycho-spiritual maturity.

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Dying in Character

Berman, Jeffrey

Last Updated: Aug-31-2014
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Criticism

Summary:

In this collection of essays on writers' end-of-life memoirs Berman combines a fine-tuned appreciation of literary strategies with reflections on how writers, who have defined themselves, their philosophies, their voices, and their values publicly, bring their life work to characteristic and fitting conclusions in writing about their own dying.  The writers he considers cover a broad spectrum that ranges from Roland Barthes and Edward Said to Elisabeth Kübler-Ross and Tony Judt to Art Buchwald and Randy Pausch.  Each essay offers insights into the writer's approaches to death and dying against the background of his or her earlier work. 

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Tenth of December

Saunders, George

Last Updated: Aug-27-2014
Annotated by:
Miksanek, Tony

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

A chubby boy with a vivid imagination and a terminally ill man intent on suicide share an adventure in survival on an extremely cold day. Robin plays make-believe as he heads to a pond in the woods. In the distance, he spots an emaciated man who appears to be wearing only pajamas. Fifty-three year old Don Eber is dying from cancer that's in his brain. Surgery and chemotherapy have not prevented its progress. He's come to the woods on this frigid day to die with dignity.

Robin finds Don's discarded coat on the ground and is determined to return it to the stranger. While toting the jacket, the boy falls through the ice of the frozen pond. Don sees Robin struggling in the water and realizes it is his fault that the well-intentioned kid is in danger. With great difficulty, Don makes his way to the pond and pulls the boy out. He removes Robin's wet clothes and replaces them with his own dry pajamas and the coat. He revives Robin and encourages him to run home.

Don is now naked, shivering, exhausted, and alone in the woods. But he no longer wants to end his life. He now understands its value, how "there could still be many - many drops of goodness" [249].
As he reminisces about the past, Don senses he is in a warm place. It is Robin's house. The boy has sent his mother to retrieve Don, and she has successfully rescued him.

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Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel for Young Adults

Summary:

Annie Howard is beginning high school in Tacoma, Washington in 1950, four years after her father returned from World War II, having been blinded in combat.  Her mother has opened her own beauty salon as a way of coping with her husband’s disability and the loss of earning power it has meant.  Annie loves her father, and maintains a close relationship with him, but is dismayed by his recurrent depressions and his steady refusal to get a guide dog, go out into the world, and respond to invitations to volunteer with an organization that helps other veterans similarly afflicted.  As the school year begins she meets two new friends, a Dutch brother and sister—refugees whose parents were killed in the war and who now live with an aunt and uncle.  Through them, and ultimately through her father, Annie learns some hard truths about the lasting effects of trauma, about the role of acceptance in healing, and about how a more grown-up love involves willingness to accompany others through some of the darker dimensions of suffering.

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Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Graphic Memoir

Summary:

Cartoonist Roz Chast's memoir is a rich, satiric, forthright, and at times deeply disturbing exploration of how she negotiated the decline of her aging parents. Disturbing because the description of all the elements with which she had to deal in easing them toward death highlights the myriad difficulties and complexities many of us will also face. Her account is centered on her relationship with her parents, moving back and forth between her childhood (unhappy) and the more recent past. Chast brings to life her father and mother's disparate personalities and makes no bones about her fraught interaction with them, especially with her mother, and her ambivalence about having to take responsibility for helping them in their final years,.

The memoir is divided into 18 chapters plus introduction and epilogue. The book has elements of multi media presentation, consisting of cartoons accompanied by extensive text in "balloons"; additional handwritten commentary - sometimes occupying an entire page; photographs - of family, and rooms in her parents' Brooklyn apartment plus items found therein; reproductions of her mother's poetry, typed and handwritten; and, finally, drawings (not cartoons) of her mother in her last days.

Chast notes that she is an only child and that her parents were older than most parents while she was growing up. The implication: the burden of taking responsibility rested solely on her and became an issue while she was raising her own family, when her parents were in their 80s. Chast makes clear that she was completely unprepared for everything that would be involved and that her parents had done nothing and would do nothing to make their own preparations for disability - "Can't we talk about something more pleasant?"

Chast's story begins with her impulsive visit - after an absence of 11 years- to the Brooklyn apartment where she grew up and where her parents still reside. She is appalled by the grime and clutter they live in. A few years later, when her parents are 90, Chast reluctantly visits more regularly, speaks to them daily on the phone, and hopes their lives will continue uneventfully and "maybe they'll both die at the same time in their sleep" (22). As Chast visits her parents more frequently the idiosyncrasies that used to irritate her still irritate her and there is no escape - they are too old and needy to run away from. Complicating the situation, her parents deny their neediness and reject most interventions that might help them in their daily lives.

When her parents are 93, after her mother falls a few times and her father shows increasing signs of forgetfulness, Chast manages to persuade her parents that they should together consult an "elder lawyer" - a specialist in "the two things that my parents and I found it most difficult to discuss: DEATH AND MONEY" (38). Even with the legalities this step puts in place, Chast feels overwhelmed when her mother is hospitalized for acute diverticulitis, leaving Chast to care for her increasingly senile father, prepare for her mother's return home, and worry about how her parents will be able to live on their own. The author makes fun of her helplessness: when she arranges for an ambulette to take her mother home from the hospital Chast congratulates herself, admitting "I had a pathetically large amount of pride in myself for doing things like that" (84).

A year later it is clear to all concerned that Chast's parents cannot continue to live alone. Chast is fortunate to quickly find a spot in an assisted living facility ("The Place") close to her own home. After settling her parents there she must sort through and empty out their Brooklyn apartment. A major undertaking. After a while "I was sick of the ransacking, the picking over and deciding, the dust, and the not particularly interesting trips down memory lane" (121). At the same time, Chast must arrange for her parents' aides, buy furniture and other items - total costs were high and not covered by insurance - "it was enraging and depressing" (128); how long her parents' savings and pensions would cover their expenses became a constant worry for Chast. Money worries became more acute after Chast's father fell and broke his hip, needing additional daily care. "I felt like a disgusting person, worrying about the money" (145). At the same time, Chast mourns her father's obvious decline and resents that her mother is insensitive to her feelings "it was, as it always was, completely about her" (141).

Chast's father dies (miserably), aged 95; her mother lives for two more years, in and out of a nursing home, not eating, rallying under the care of a hired attendant, then fading again. During this period, as the mother herself notes, "her brains were starting to melt." Chast feels the need to "have a final conversation with my mother about the past" (201), expressing the wish that they could have been better friends while Chast was growing up. The response is not what Chast had hoped for, and she is surprised by how upset she feels. Yet a week before Chast's mother dies, the mother declares love for her daughter.

When her mother is no longer communicative, Chast draws her as she lies in bed - Chast's manner of communication, bringing to mind other artists who drew dying loved ones in their final days (see annotations of Sue Coe's "The Last Eleven Days" and Ferdinand Hodler's "The Dying Valentine Godé-Darel" ). In the epilogue, Chast explains her decision to store the "cremains" of both parents, separately, in her bedroom closet. "Maybe when I completely give up this desire to make it right with my mother, I'll know what to do with their cremains. Or, maybe not" (227).

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