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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Summary:

The Caregiver’s Tale: Loss and Renewal in Memoirs of Family Life is divided into three parts. The first section, “Care Situations,” provides the cultural context of illness and disability and focuses on four common family care situations: cancer, HIV/AIDS, mental illness/chemical dependence, and dementia. The second section of the book, “Care Relationships,” highlights patterns of caregiving, including caring for children, sibling care, couple care, and parent care. The third section of the book contains well over 100 annotations of memoirs of caregiving, each approximately a half-page in length.

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First published in 1991, and available in reprint edition, this is a compendium of selected artworks and excerpts of diverse medical and literary writings from pre-Hippocratic times to the end of the 20th C. Each chapter integrates selections from medical or scientific treatises, with commentaries written by historians, essays by physicians and writers, and prose and poetry by physicians and by patients. The 235 images in this book include illustrations from medical textbooks and manuscripts, as well as cartoons, sculptures, paintings, prints and sketches. The colour illustrations are stunning and copious, and provide a visual narrative that resonates with each chapter of the book.

The first part of the book, Traditional Medicine, includes chapters on Ancient, Medieval, Renaissance, and Enlightenment medicine. These serves as a preamble for the second part, Modern Medicine, which includes art, medicine and literature from the early 19th century to the end of the 20th century.

The chapter “From the Patient’s Illness to the Doctor’s Disease” illustrates the rise of public health and scientific research with excerpts from works by Edward Jenner, John Collins Warren, René Laënnec, and John Snow, together with experience of epidemic diseases described by writer Heinrich Heine in his essay on “Cholera in Paris”. The chapter on “Non-Western Healing Traditions” includes botanical research by Edward Ayensu, a short story by Lu Hsun and the writing and paintings of George Caitlin on North American Indian healing.

In the patient-focused chapter, “Patient Visions: The Literature of Illness,” are stories of sickness by Thomas DeQuincey, Leo Tolstoy, Giovanni Verga, Katherine Mansfield, André Malraux, and Robert Lowell. The chapter which follows, “Scientific Medicine: the Literature of Cure,” provides the medical counterpoint with personal correspondence by Freud, medical treatises by Wilhelm Roentgen and Louis Pasteur, an essay on surgical training by William Halsted, and an excerpt from George Bernard Shaw's play, Too True to Be Good, in which a microbe takes centre-stage.

There are chapters on “Medicine and Modern War,” which includes personal writing by nurses Florence Nightingale and Emily Parsons, and poems by Walt Whitman, and Emily Dickinson, and “Art of Medicine,” with works by Arthur Conan Doyle, Anne Sexton, James Farrell and W.P. Kinsella.

The final chapter, “The Continuing Quest for Knowledge and Control,” contains no medical treatises but rather ends with personal reflections by the writer Paul Monette on AIDS, and by physician-writers, John Stone, Sherwin B. Nuland, Lewis Thomas, Dannie Abse, and Richard Selzer.

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Veneta Masson’s wonderful collection contains 56 "entries," essays, poems, fragments, and articles about her work as a nurse in an inner-city clinic. Her story is offered not as a neat beginning to end narrative, but as a pastiche of observations that range from commentary on how doctors and nurses approach caregiving, to a poem about Maggie Jones, a patient who changed Masson’s life.

As she follows the growth of the clinic and muses about the professionals and patients who give it life, Masson also talks about nursing: how it was, how it is, and why it’s such an important, and sometimes difficult to define, vocation. Some entries were contributed by Masson’s colleagues, Jim Hall, Teresa Acquaviva, Sharon Baskerville and Katrina Gibbons, but the best are Masson’s own.

This book should be required reading for nursing students, especially entries, "Nurses and Doctors as Healers," A Case for Doctoring Nursing," "Pushing the Outside of the Envelope," "If New Graduates Went to the Community First," "A Good Nurse," "Nursing the Charts," "Tools of the Trade," "Bring Back Big Nurse," "A Ready Answer," "Mindset," "Seven Keys to Nursing," and "Prescriptive Ambivalence." This book, especially for the essays "Nurses and Doctors as Healers," "A Case for Doctoring Nursing," "Prescriptive Ambivalence," and "If New Graduates Went to the Community First," should also be slipped into every medical student’s pocket.

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This collection of nonfiction writings by fiction author Amy Tan includes multiple genres: essay, email, responses to journalist's questions, eulogy, love poem, university presentations, travel journal entries, and a commencement speech. Hence Tan terms the work "musings." Consonant with the multiple genres are multiple topics, ranging from memoirs of childhood and young adulthood, writing tips, fun portraying a dominatrix in a writers' rock-n-roll band, work on the film version of The Joy Luck Club, and past and present tragedies and struggles.

Much of the book, however, centers on medically-related themes. Prominent themes are: her diagnosis of neuroborreliosis--a form of late-stage Lyme disease--detailed in the final essay entitled "The Opposite of Fate"; her traumas such as the torture and murder of her best friend; the death of her father and brother from brain tumors; a car and a skiing accident; the cancer death of her editor and, woven throughout, the complicated psyche of her mother, Daisy Tan.

Daisy's extreme emotions ruled the family, and her behaviors, such as threatening not only suicide but also murder (she held a knife to Amy's throat), caused profound responses in her daughter. Probably one of the most adaptive responses was Amy Tan's use of their complex relationship in developing the nuanced mother-daughter relationships that characterize her fiction. Daisy's decline and death from Alzheimer's disease are also detailed here.

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The first sentence of the introduction indicates the author's intention to talk about "how we do it--and how we could do it". Ending life, she says, is an issue under sustained debate in the United States and in much of the developed world. The argument over physician-assisted suicide is the central framework. The described debates on euthanasia and suicide include two pro and three con arguments in American and international contexts. This collection includes essays, practical notes, historical explorations, policy analyses, fiction, and creative non-fiction written by the author.

The author describes the role of fiction and creative non-fiction as offering a recognition of narrative as a respected form of investigation of social issues. Included are two selections that are in this genre and they are very powerful. The essay on the ethics of self-sacrifice is timely and well written. The author's final conclusion is that Stoic and Christian thinking are still in active collision in much of our consideration of these issues and that this means that advance personal policy making remains in the fullest sense an exercise for each individual.

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Fifteen selections--short stories, essays, and memoir--make up this collection. Two stories are notable: The Whistlers' Room and Atrium: October 2001 (see annotations). The title story is a translation and retelling of an obscure German tale published 75 years ago. Set in a military hospital in Germany during World War I, four soldiers share a common wound--throat injuries and laryngeal damage necessitating a tracheostomy for each man. This remarkable quartet of patients forges a fellowship of the maimed.

"Atrium: October 2001" describes the random meeting between a physician and a terminally ill teenager in the hospital atrium. The subject of death dominates their discussion. "Parable" chronicles an elderly doctor's efforts to comfort a dying man, and in the process, ease both their suffering.

Excerpts from Selzer's diary reveal much about the character of the author as well as the characters in his life. He also reminisces about growing up in Troy, New York. Approximately one-quarter of the book is devoted to Selzer's musings on works of art (sculpture and painting). Lighter fare includes a discussion of life behind the podium, a description of his home, and a new ending for A Tale of Two Cities by Charles Dickens.

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Whether he is bringing to life the farmers in Grant Wood's "American Gothic," or revealing the pain of losing his wife (The Lu Poems), John Stone's work always hits the mark. This collection revolves around themes as varied as music, family, the wonder and horror of being alive in the world, and Stone's own sleep disorder. There are few poems specifically about medicine: "Transplant," "While Watching His Own Electrocardiogram He Welcomes in the New Year," and "Coming Down from Prozac."

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This is a collection of medically related stories and poetry, most of which were previously published in medical journals like JAMA (Journal of the American Medical Association), Annals of Internal Medicine, and the American Journal of Medicine. "Country Doctors of Humble Pie," "Boss Cow," and "Discipline" are humorous tales about small town medical practice. "Second Opinions," "Net Worth," and "Making Friends" are stories of patients and their idiosyncrasies.

"Hafiz Ali Goes Home" concerns a dying man who wishes to return to his home village to die, rather than dying in the sterile confines of the hospital. The story details the misadventures of Hafiz Ali's two sons as they attempt to carry out his last request.

Many of the poems deal with clinical diagnoses ("Zoster" and "Lupus Erythematosis") or the history of medicine ("Towne of Guy's" and "The Turning"). "Doing Post-Mortems" is a thoughtful poem about the war (or relationship?) between the sexes in medicine.

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