Summary:

A woman stands nude with her back to the viewer. Her arms are raised, hands interlaced behind her neck. Her back is deformed and scarred, but her body, depicted in warm flesh tones, looks solid and capable. She stands uncomfortably but patiently, as if she is waiting for a medical exam in a doctor’s office, or as if she is inviting the audience to look and learn.  

A skeleton is superimposed anatomically over the lower half of the woman’s body, including her lower spine, pelvis, and femurs. A round form surrounds the lower spine which looks abnormal. In the blue background is a skeleton of a horse. The horse is angled away from the audience, such that we see its rear and tail most prominently. But its head is turned to look backwards, so that its empty eye sockets appear to be peering at the woman and at the audience.  

View full annotation

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.  

View full annotation

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

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:

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

Summary:

Marie Commeford, daughter of Irish Catholic immigrants who grows up in Brooklyn, narrates her life story in episodes rich with reflection on the losses, failed fantasies, illnesses, and disappointments of a life at the edge of poverty, which is also rich with love and poetry and humor and the stuff of which wisdom is made.  The story unfolds as memory unfolds, in flashbacks and reconstructions shaped by a present vantage point from which it all assumes a certain mantle of grace.   From the opening story in which a neighbor girl slips on the steps to a basement apartment and is killed, to repeated glimpses of a blind veteran who umpires the neighborhood boys' street games, to the bereaved families Marie meets when she works for the local undertaker, to her gradual discovery of her brother's closeted homosexuality, and to her aging mother's death, the story keeps reminding us of how much of life is coming to terms with the "ills that flesh is heir to," and also how resilience grows in the midst of loss.  Because much of the story represents the vantage point of a child only partially protected from hard things, it invites us to reflect on how children absorb large and hard truths and learn to cope with them. 

View full annotation

Summary:

Each chapter in this book explores the forms and effects of humor in healthcare, mostly in hospital settings, beginning with a touching account of a person who worked as a hospital clown, visiting patients, enlivening staff, haunting the halls of a hospital where she became a beloved and important reminder that the disruptions of illness can be reframed in ways that make them more tolerable and bring patients back into communities from which they often feel exiled.  In subsequent chapters Carter, who himself went through cancer treatment, and writes from that experience as well as from his experience as a volunteer in an ER, draws from his compendious collection of medical jokes and stories to provide examples of the kinds of humor that help nurses and doctors, as well as patients and their families, get through the days.  Some of it is edgy and ironic, some broad and slapstick, some wordplay that helps to domesticate the often alienating discourse of clinical medicine.  His point is to provide some analytical categories and ways of understanding the kinds of humor that can be helpful-not simply to share a collection of jokes and stories, but the book does, especially in the final chapters, provide a sizeable collection of those, ranging from puns (including what he calls "groaners") to patient stories that in various ways turn medicine on its head.

View full annotation

Summary:

A big believer in evidence-based science, Australian Professor Don Tillman is 39 years old, “tall fit and intelligent with a relatively high status and an above average income.” He should be attractive to women and succeed in reproducing. Yet he is alone. Dating is a disappointing waste of time.

After he is asked to give a lecture on Asperger’s syndrome, Don decides to solve his problem scientifically. He develops his Wife Project – a massive questionnaire designed to weed out incompatibles and identify women most likely to be a match. Intelligence, punctuality, shared tastes, and no use of tobacco or alcohol are high on the list of desirables. His only friends, geneticist Gene and psychologist Claudia, humor and support him. Gene and Claudia have an open marriage, which means that Gene’s “research” involves his bedding many women of different nationalities.

Into his life comes Rosie—a wild, disorganized bartender who smokes. She is totally incompatible. Curious about her biological father, Rosie inspires Don to develop the "father project" as a way of identifying all possible candidates and then eliminating them one by one using DNA. Circumstances force them to work together at various other schemes—running a one-off bar for which Don, the non-drinker, becomes a walking encyclopedia of cocktail recipes. A trip to New York City results in more hilarity, further destabilizing Don’s equanimity. His stereotypical assumptions are challenged when he discovers that she is completing a PhD on the side. They have fun. But Rosie cannot be the right one because she would fail the questionnaire.

Eventually and predictably Don realizes that it is Rosie whom he wants and needs. He develops the Rosie project to win her back. He also shows Gene that the wonderful Claudia is about to leave him and that open marriage is for the birds—or is it the bees? Happy endings all round.

View full annotation

Summary:

The writer opens the volume by discussing the ways in which the poetry created by the affected person differs from the narrative form of describing the experience of illness—the classic “pathography.”  The essays in the collection demonstrate, by using examples, some of the unique qualities of the poem as an alternative to a prose narrative progression as well as the ambiguities introduced by the language of poetry. The discussions of the poetry presented provide the reader with guidance to the acceptance of poems in their “own terms” in order to understand the poet’s internal sense of the meaning of illness.  By allowing new and different information to become available for consideration the careful reader may gain new insights into the lives of those who are ill or disabled.

View full annotation

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.

View full annotation