Showing 71 - 80 of 1260 annotations tagged with the keyword "Death and Dying"

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.

View full annotation

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.

View full annotation

Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Criticism

Summary:

This is a compendium of original critical essays on a wide range of topics written by a diverse group of scholars of what has traditionally been called "medical humanities." The editors argue for a change of name to "health humanities," pointing out that "medical" has a narrow frame of reference - evoking primarily the point of view of physicians and their interaction with patients, as well as the institution of biomedicine. Such a focus may exclude the myriad allied individuals and communities who work with patients and their families. The editors quote Daniel Goldberg, who notes that the health humanities should have the primary goal of "health and human flourishing rather than  . .  the delivery of medical care" (quoted on page 7).

The three editors are innovative contemporary scholar-educators in the field of medical/health humanities. They advocate Megan Boler's "pedagogy of discomfort" (quoted on page 8) and wish to provide students and educators "an opportunity to examine critically the origins and nature of their personal beliefs and values, beliefs and values embedded in the curriculum and the learning environment, as well as institutional policies - all of which intersect" . . and influence quality of care (8). In their own work and in this Reader the editors favor an approach to health humanities education and research that "challenge[s] the hegemony of a biomedicine that contributes to disparities and the discrimination of persons who don't quite fit the codified and naturalized norms of health."

The book is divided into 12 parts, each comprising three or four chapters: Disease and Illness, Disability, Death and Dying, Patient-Professional Relationships, The Body, Gender and Sexuality, Race and Class, Aging, Mental Illness, Spirituality and Religion, Science and Technology, and Health Professions Education. At the end of each section there is "an imaginative or reflective piece" on the topic. A wide range of disciplines is represented, including disability studies, history, bioethics, philosophy, literature, media studies, law, and medicine. Some of the authors are well-known and have been practicing their profession for many years (for example, Arthur Frank, Sander Gilman, Anne Hudson Jones, Martha Montello, John Lantos) while others have entered the field more recently and are gaining increasing attention (for example, Rebecca Garden, Daniel Goldberg, Allan Peterkin, Sayantani DasGupta).

The Reader is well documented: there are footnotes at the end of most chapters, a references section of 50 pages, notes on contributors, and a 72-page index.

View full annotation

Summary:

Soldier Girls is an exhaustively researched, intimate report by a journalist of the lives and deployments of three women in the Indiana National Guard, who, through serving together in Afghanistan, become friends. Each of the women joined the Guard prior to 9/11/2001, mostly for economic reasons. Thorpe selected women who were vastly different in age and background.  Debbie Helton becomes a grandmother during deployment and has served in the guard for decades - she is eager to be deployed. Michelle Fischer (a pseudonym) is newly out of high school, has liberal political views and sees the Guard as a way to pay college tuition. Desma Brooks is a single mother of three with a fractured and unreliable support system. All three have alcohol and or drug dependency issues. Brooks and Helton are deployed a second time - to Iraq.

 As one of the women, Fischer, notes, the Bush wars were an ‘economic draft' (p. 374) The struggles to find adequate housing, reliable partners, good schools, decent jobs, and to avoid the morass of drug dealing, which particularly surround Fischer and Brooks, are paramount in their lives.   

The women bond not only due to their shared gender, but also due to their mutual sense of humor. For example, to distinguish her tent from the dozens of similar ones on the base in Afghanistan, Brooks orders 50 plastic pink flamingos to decorate the ‘lawn.'   

In Afghanistan, the women are part of the support troops, doing such jobs as fixing AK-47s for the Afghan National Army. Nonetheless, even there, they are in harm's way, with the potential for injury or death from mortars, buried bombs (landmines) and improvised explosive devices (IEDs). In Iraq, Brooks is exposed to danger daily, as she drives an armored vehicle  usually in the navigation spot of a long convoy, third in line. She suffers traumatic brain injury after driving too close to and detonating a large IED.    

Thorpe weaves the three stories together of the women into a seamless whole. She chooses to follow the post-deployment lives of the women, and it is after demobilization that the heartaches truly develop. For example, Helton, who had always been upbeat and extraordinarily generous with her nurturing, turns inward and suffers depression. Fischer finds it difficult to relate to anyone without a military background, yet feels alienated from veterans who continue with a gung-ho attitude. And Brooks's children, who felt abandoned by their mother, act out in different and difficult ways.   

Issues of military sexual trauma are introduced, though none of the main characters experiences MST. However, all are harassed, to varying degrees. Sexuality is a prominent theme, both heterosexual and homosexual. "Don't ask, don't tell" was the policy during their deployments. Partners during deployment are different than those at home, and infidelity is common on base, further dividing military from civilian life.   

A particularly poignant side-story is that of the translator, Abkar Khan, introduced on page 171: "He was movie-star handsome, with a square jaw, high cheekbones, chiseled lips, and an aquiline nose." Abkar accomplished what no amount of cultural sensitivity training might - he gave a face and voice to the people the troops had been sent to help: soldiers would later relate "that getting to know Abkar was the single greatest thing that would happen to them in Afghanistan - he was what gave meaning to their deployment". (p. 172) Abkar marries his first cousin in an arranged marriage, temporarily realizes his dream to work in the United States, then returns for a lucrative but dangerous job of translating in interrogations.   

Posttraumatic stress disorder, post deployment risky behavior, traumatic brain injury, and bone and joint injury due to maneuvers required while wearing heavy equipment and protective clothing are discussed. Despite the large numbers of sexual partners, no sexually transmitted diseases are discussed, but one minor character does get an abortion after a relationship with a superior officer (these relationships, though forbidden, seem common). As noted in the book, the costs of the wars in Iraq and Afghanistan go far beyond the activities in the war theaters themselves, but continue on in the lives of the returned troops, and the families of all those who were deployed.       

View full annotation

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. 

View full annotation

Summary:

Following the 9-11 terrorist attacks, approximately 20 New York University medical students volunteered to work with the Office of the Chief Medical Examiner of the City of New York (OCME) attached to the NYU School of Medicine to sort, catalogue and identify human remains recovered at Ground Zero. On September 11, Barry Goldstein, Adjunct Professor of Humanism in Medicine at NYU, was to begin teaching a course on aspects of photography to medical students. After 9-11, Goldstein decided to photograph and interview the volunteer medical students in order to document their individual experiences and memories of the events of September 11 and their personal reflections of working with the dead.

Photographed with a simple black background in the "scrubs" they wore while working in the morgue, and with a personal "prop" of their choosing, the colour portraits are intensely sorrowful and candid. Goldstein, who is an experienced portrait photographer, observed that "for reasons I still find unclear, these students were surprisingly adept at absenting themselves from the entire process of picture taking. As a result, the masks that we generally put on for the world when faced with a camera were absent." Accompanying each student's image is an excerpt from his/her interview about memories of working in the morgue and the meaning of that work.

View full annotation

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.

View full annotation

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.

View full annotation

Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: Collection (Essays)

Summary:

According to the editor’s introduction, this collection is based on the AMSA (American Medical Student Association) assertion that the physician must be a humanist, a communicator and an advocate as well as a scientist.  To support these and related commitments, it offers essays that demonstrate how and under what circumstances the introduction of creative arts into the lives of professional care providers and their patients and families may be achieved.  Included in some essays are general themes, while in others there are very detailed descriptions of methodology. Others utilize more standard research designs and outcomes.

What creative arts are included in the discussions?  Visual arts, drama, music, and story-telling stand out in terms of potential and, in some cases, already demonstrated applicability to a medical practice.  Some of the essays propose art forms that can be translated into a useful frame for health practitioners, artists and/or patients and their families.

Some essays include assessment of research projects or various designs of methodologies for using creative art in the medial professional education environment.  Others rely on personal experiences using the arts in the learning and teaching of skills such as communication with peers, patients, family and friends.

The volume is divided into four sections.  The first cluster of essays considers using the arts to illustrate empathy in encounters among providers and recipients of health care services.  This is demonstrated in a variety of settings as disparate as end-of-life situations and dental training programs.

The second section includes examples of drama, music and drawing as part of caring for caregivers.  Through group settings and peer support, art serves as a stress reducer for those whose work involves the highly emotional situations health professionals often encounter.

Section three explains and demonstrates the narrative reflective process, in which experiences and stories are shared among those persons involved as patients, family members and caregivers.  The special situation of interviews in pediatrics is given attention in one portion of this section.

The final section addresses the question of using art to explore troublesome issues that demand change or special attention.  Included are ethical dilemmas and the need for health professions to build bridges to the community at large.

View full annotation

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).

View full annotation