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:

Kitty Fane is a beautiful young woman whose mother has raised her to make a suitable match. But Kitty refuses a number of suitors; several years pass and eventually she is reduced to marrying Walter, the colonial bacteriologist in Hong Kong. Walter is a shy and awkward man who loves Kitty passionately, but has no idea how to express it; Kitty is charming and socially adept, but vacuous. In Hong Kong Kitty engages in a yearlong affair with Charles Townsend, the assistant colonial secretary, and a married man whose celebrity potential far eclipses Walter's stolid scientific work. The novel opens when Walter discovers his wife's infidelity.

Kitty believes that Townsend is madly in love with her and prepared to divorce his wife and sacrifice his career to marry her. Walter, who suffers from a broken heart, gives Kitty an ultimatum--either Townsend must promise to divorce his wife and marry her, or Kitty must accompany Walter to a city in the interior where he has volunteered to go to fight the cholera epidemic. Townsend demurs; Kitty is crushed; and the desperately unhappy pair travels to the cholera-ridden city, where they move into the house of the newly-dead missionary.

There, Walter (who is also a medical doctor) sets to work, day and night, to institute public health measures and care for dying patients. Meanwhile, Kitty meets Waddington, the British consul, a cynical alcoholic, who is at heart a good and honest person; and the French nuns, who labor tirelessly to care for orphans and the ill. Impressed by the nuns' selflessness, Kitty begins to devote herself to assisting them and trying to understand their spirituality.

When he learns that Kitty is pregnant, Walter asks if it is his child; Kitty responds, "I don't know." This completes the destruction of Walter's heart, and he soon dies of cholera--presumably as a result of experimenting on himself to find a cure. Kitty learns that the nuns, the soldiers, and all the people of the city consider Walter a saint, who has sacrificed himself for their welfare. However, while Kitty has learned to respect her husband, she could never love him.

Kitty stays only briefly in Hong Kong before returning home to London. Shortly before her arrival, she learns that her mother, whom she believes is responsible for her (Kitty's) shallowness, has died. The novel ends with Kitty vowing to bring up her daughter as a strong and independent woman, and preparing to move with her father to the Bahamas, where he has recently been appointed Chief Justice.

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Black Bag Moon is a collection (one is tempted to say a "mixed black bag") of short stories (but not clearly "short fictions" - clarified below) about medical patients. The reputed authors are identified as these patients' physicians, who recount these stories in first person. By my math, there are nine authors who narrate stories about 37 patients in 29 chapters. Most chapters have two patients in unrelated stories that sometimes share a theme. Several of the authors know each other as colleagues and two are a married medical couple. Most of the stories occur in Australia or New Zealand but some are in places are as far flung as England, Scotland and unidentified, possibly fictional, islands in the South Pacific. The practitioners are, for the most part, family physicians and care for people of all ages, providing care for everything from breast masses to congestive heart failure to trauma to occupational health to - almost overwhelmingly - mental illness threatening severe violence. The last - serious mental illness -  is, as are all the patients and their illnesses in this volume, almost exotically different from anything most readers of this database are likely to encounter as health care providers or readers. Think Crocodile Dundee or perhaps television's Dr. Quinn or ‘Doc' Adams of Gunsmoke. Or all the above but in the late 20th Century Outback.

Since most of the stories involve working men and women - mainly men - there is a decided flavor of  A. J. (Archibald Joseph) Cronin's The Citadel to the stories; but the peculiar aspect of Australia's frontier pervades each encounter with the patients in this book, whether they are being treated over the radio for breast lumps, being airlifted to the hospital for a badly broken elbow, or becoming demented from environmental toxins in a land and time wherein OSHA and DEP (and the principles underlying them) might as well be acronyms from Mars.

Curiously, for fiction, there are intermittent footnotes to literary (Honore de Balzac, Soubiran) sources, historical figures (Hippocrates) and relevant texts on subjects covered in the stories, e.g., petrol-sniffing, tropical diseases, and physical diagnosis. 

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Summary:

This collection of 16 short stories focuses on doctors and patients in San Francisco, where a wide variety of wealth and culture impact the delivery of medical care.  Further, there are many restrictions—financial, bureaucratic, ethical, and legal —that limit what doctors can do, especially in cases of patients near death.

The author, Louise Aronson, is a geriatrician who knows this terrain very well, having trained in San Francisco and worked as a physician there. A skilled writer and close observer, she has created dramatic and often funny stories that reveal social and bioethical complexity. About half the stories describe end-of-life issues for the aged and the dilemmas for their physicians and families.

In ‘The Promise,” Dr. Westphall orders comfort care only for an elderly patient who has suffered a massive stroke, but a hospital gives full treatment because there was no advance directive and the daughter told the attending to do “what he thought best.”

When Dr. Westphall sees this barely functioning patient in a skilled nursing facility seven months later, he tenderly washes her face and hair—although the text teases us that he might have been prepared to kill her.

In “Giving Good Death,” a doctor is in jail charged with murder; he has fulfilled the request of Consuela, a Parkinson’s patient, to help her die. When it appears that she may have died for other reasons, he is released, his life “ruined.” He leaves San Francisco, and, we surmise, medicine. In three other stories, doctors also leave the profession: the cumulative stresses of work and family and/or a sense that it’s not the right path bring them to that choice.

On the other hand, one of the longer pieces “Becoming a Doctor” celebrates the profession, despite all the rigors of training including sexism against women. 

The stories bring multicultural insights; we read of people from China, Cambodia, Latin America, India, Russia, and the Philippines. Some are African-American; some Jewish, some gay. These different backgrounds color notions of health, death, and medical care. There are also pervasive issues of poverty and, at another extreme, professionalism that is hyper-rational and heartless.

Indeed, a recurring theme is care and love for people, no matter their background or current health status. A surgeon realizes (regrettably too late) that the secret of medical care is “caring for the patient—for anyone—just a little. Enough, but not too much” (p. 135). 

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When Lia Lee's sister slammed the front door to their Merced, California, apartment, Lia experienced her first in several years of increasingly severe seizures. The Lee family knew that the noise had awakened a dab, an evil spirit who stole Lia's soul. They also knew, in the midst of their grief for their infant daughter, that people suffering from "the spirit catches you and you fall down" often grew up to be healers in their Hmong culture.

Not surprisingly, the physicians and other health professionals who worked with Lia and her parents over the next seven-plus years did not share this diagnosis--most of them did not even know about it. Fadiman melds her story of Lia, the Lees, the family's physicians and social workers, and countless other people who enter the Lees' life (usually uninvited and unwelcome) with the long history of the Hmong people, their religion and culture, and their more recent lives as refugees from war in Laos and Cambodia (and the troubled history of their relationship to the U.S. military system).

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In Illness as Narrative, Ann Jurecic thoughtfully examines the unruly questions that personal accounts of illness pose to literary studies: What is the role of criticism in responding to literature about suffering?  Does the shared vulnerability of living in a body, which stories of illness intimately expose, justify empathic readings?   What is the place of skepticism in responding to stories of suffering?  Does whether or how we read illness narratives matter?  Jurecic's questions entice discussion at an interesting cultural moment.  The numbers of memoirs and essays about illness—and their inclusion in medical school and other humanities courses—multiplied from the later decades of the 20^th century to the present.   However, their increase, and their potential to encourage empathic readings, coincided with dominant literary theories that advocated vigorously skeptical, error-seeking responses to texts and their authors.  Jurecic reminds us that Paul Ricoeur called such responses "the hermeneutics of suspicion" (3). 

Jurecic's astutely researched, nuanced answers to those questions propose a corrective to the extreme skepticism of "disembodied criticism." Such criticism, she claims, dismisses testimonial writing from "a position of distance and privilege."  But her answers also affirm that intellectually "rigorous" responses to texts are central to the critical humanities (15).  To further her position, she offers attentive readings of accounts of illness by Virginia Woolf, Reynolds Price, and Jean-Dominique Bauby, as well as the theoretical writing of literary and other scholars.  For instance, Jurecic speculates that the condition of a reader's body aligns with his or her responses to texts.  In a chapter called "Theory's Aging Body," she observes that as skeptical scholarly readers age—Stephen Greenblatt, Michel Foucault, Judith Butler—they have turned their attention to "illness, vulnerability, and mortality" (93).  Jurecic also suggests that a function of criticism is to uncover the cultural conditions that memoirs and essays about illness respond to.  Living "at risk" is a recent one.  In stories of living with the risk of experiencing a particular illness in the future, potential patients create narratives of uncertainty to discover the "personal meaning of the impersonal statistics" that medical research now regularly delivers (18). 

 Jurecic also reflects on the ways theorists have understood the possibilities of representing and responding to pain in the varied approaches of philosophers Elaine Scarry, Martha Nussbaum, and Richard Rorty and of anthropologists Jean E. Jackson, Byron Good, and Veena Das.  In an exceptionally comprehensive and nuanced reading of Susan Sontag's theoretical, fictional, and journal writing about suffering, Jurecic uncovers Sontag's inconsistent, yet revelatory positions on the human capacity for responding to representations of pain.  The chapter on Sontag is enriched by Jurecic's reading of Annie Lebovitz's and David Reiff's responses to Sontag's suffering: in Lebovitz's controversial photographs of Sontag's final days (included in A Photographer's Life: 1990-2005) and Reiff's memoir about his mother's illnesses (Swimming in a Sea of Death). 

Illness as Narrative closes with examples of what Jurecic calls reparative writing and reading practices.  In the first instance, ill writers such as Jean-Dominique Bauby (The Diving Bell and the Butterfly) both recreate "a more coherent sense of themselves" and dislodge "fixed ideas and narratives" about illness (109).  In the second instance, Jurecic outlines the limits of two competing readings of Anne Fadiman's The Spirit Catches You and You Fall Down.  One assumes that readers will by nature empathically imagine those who are culturally different from themselves.  The other looks skeptically at the assumption that what medical educators call cultural competence can be acquired by reading a book.  Jurecic suggests that strategies for reading and teaching informed by Janelle S. Taylor, Eve Kosofsky Sedgwick, and Rita Felski can encourage more complex habits of response, such as Taylor's "'empathic curiosity'" (quoted 122).

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Mija, a 66 year-old woman, is raising her daughter's grumpy teenaged son and trying to make ends meet with a part-time job as a maid for an elderly, wealthy man who has suffered a stroke.

She finds herself searching for nouns, and after consulting a doctor, is told bluntly that she has early Alzheimer's disease.

Perhaps because of her preoccupation with language, she joins a poetry class and strives to write, listening carefully to the poet-instructor's philosophical advice on vision and creativity. Throughout the film, she carries a little notebook with her and pauses to write her thoughts about flowers, beauty, birds, and apples.

A young girl in the grandson's class has committed suicide by drowning and Mija witnesses the mother's grief. From the girl's diary, the teachers and family learn that she had been repeatedly raped by six boys, one of whom is Mija's grandson.

The fathers of the other boys try to make a monetary settlement with the bereaved mother; they urge Mija too find an extraordinay amount money. In despair, she extorts the money from her employer as a "favour"-but the boy is utterly indifferent to her action, and in the end, is taken by the police anyway. Mija summons her daughter. She leaves a bouquet of flowers and the one poem that she managed to compose for her instructor to find at the last class. The daughter arrives to an empty home and we assume Mija has drowned herself.

 

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At first the title seems to relate to the main character's lay-off or departure from his job as a professional cellist in a bankrupt and dissolving orchestra.  As the story continues, the title's unpredictable meaning becomes clear. 

Not surprisingly, jobs for cellists are difficult to find. Shattered by his desperate situation, Daigo, the central character (Masahiro Motoki), and his wife Mika (Ryoko Hirosue), return from the city to his hometown where they begin to experience stresses and discomforts associated with joblessness.  After a long period of searching, Daigo responds to an ad for someone to work in departures. Believing that he is applying for a travel advisor job, he discovers that the position involves the ceremonial art of caring for the bodies of those who have recently died--or departed.  He learns about encoffination, the elaborate ritual of washing and dressing the body before placement in the casket prior to burial, from Sasaski (Tsutomu Yamazaki), his new employer. 

Mika is so appalled and ashamed when she learns about his new career, she decides to leave him.  In spite of his own unhappiness, Daigo continues on.  With the remarkably skilled Sasaski at his side, Daigo develops great sensitivity in the ritualized care that is provided before family mourners.  Each of the caring situations becomes for Daigo, a rich story about the textures of human life.  He seeks solace for himself and another measure of dignity for the departed by playing beautiful music on his cello.  Most viewers, including the eventually reconciled Mika, are impressed by the beauty of this probably unfamiliar Japanese ceremony.

Another moving dimension of Daigo's personal story occurs when information is revealed about the father who had abandoned him when he was a child.  Circumstances intervene so that Daigo's new skills and sensitivities contribute to an understanding of that distant past and an opportunity to provide his father with a dignified departure ceremony.    

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The two parts of this work investigate judicial punishments in imperial China as well as 18^th and 19^th century  Western reactions to and obsession with  Chinese methods of torture and with the Chinese method of public execution called death by a thousand cuts (lingchi). The authors present their interdisciplinary study as a "cross-cultural hermeneutics" (245), concluding that this use of torture and tormented death in China is not special but forms part of a global pattern of state-sponsored cruel and inhumane punishments recorded over time.

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The Bonesetter's Daughter is divided into two major stories. One is the story of Ruth, an American-born Chinese woman, a ghostwriter for self-help books, in a relationship with a white man, stepmother to his two teenaged daughters, and finally, daughter of LuLing, who Ruth fears is becoming demented. Ruth begins to realize what her mother's memory loss means to both of them: for her mother, an increased need for attention, for Ruth, disappearing stories that could help Ruth understand her family and render a feeling that she is part of a larger story.

The second major story is that of LuLing, which Ruth discovers in the form of documents LuLing had given her several years earlier, written in Chinese, LuLing's attempt to hold on to fading memories of her life in China. This story within a story--LuLing's life in a village called Immortal Heart; the secrets passed on by her nursemaid Precious Auntie (who, we learn, is also her mother); a cave where bones are mined that may be the teeth of Peking Man; tales of ghosts and curses--parallels in many ways the present-day issues confronting Ruth: an inability to speak up to her partner and his two daughters; why she remains a ghostwriter, without a voice of her own; an increasingly problematic and confusing relationship with her mother. Answers to both women's puzzles and problems unfold as LuLing's story is translated in its entirety, providing answers through memory and words that could not be spoken, only recorded.

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