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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A nurse-poet well-known for her empathic descriptions of patients, Cortney Davis suddenly found herself in the hospital bed with a life-threatening condition.  Although she is a masterful writer, she could not find words to capture what she experienced as a patient.  Instead, she started painting her emotions—fear, suffering, and loneliness expressed through color, line, and tone.  The first of 12 paintings in this pathography shows her lying naked on a white slab, not literally what happened but expressive of how vulnerable and helpless she felt.  Each of the 12 paintings carries an emotional and spiritual truth—often raw and miserable.  Davis accompanies each painting with a brief commentary about how and when the painting was done, explaining, for instance, why some of the figures have no facial features. But the vivid paintings speak for themselves, and they add a different way of knowing not available through words.

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Performance poet Bao Phi was born in Saigon; his parents emigrated to Minnesota, where he grew up and still lives. His poetry is rooted in Asian American immigrant experience, especially in Vietnamese American experiences, and speaks of racism, economic hardship, cultural difference, and the legacy of the Vietnam war. The collection is divided into four sections, each preceded by a quote from another (usually Asian American) writer. Four introductory poems set the tone for the poet's project of "refugeography" (from "You Bring Out the Vietnamese in Me", p. 9): recognition and celebration of the variety of Asian American lives, and anger at exploitation - both economic and cultural: "They box our geography / And sell it in bougie boutiques / Our culture quite profitable / But can somebody tell me / How our culture can be hip / And yet our people remain invisible?" ("For Us", p. 1)

In section 2 (The Nguyens) 14 poems highlight the lives of a variety of unrelated individuals and families across the US who have the same family name. "They are one story for every Viet body, one song for every voice that sings or otherwise" (p. 17). Many are angry and bitter. There is the Sacramento girl who grows up, makes good, and wants now to get even with the white boy who pushed her down and called her "gook" in ninth grade: "where is your wheat- haired crown now, / where is your Made- in- America tongue: / a slide of spit to take me back to where I came from / now that I am ready to show you / show you / where I come from" ("Vu Nguyen's Revenge", p. 20). There is the chef who had once worked in the kitchen of a restaurant where the waitstaff was white only: "let me tell you that the white people / can choke to death on their lychee martinis" ("Fusion", p. 24). Others are reflective - such as the soldier in Iraq who meditates, "let me not tear apart a people, a country, causing Iraqi food to / become the nouvelle cuisine in 25 years back home" ("Mercy", p. 29).

Some wrestle with generational misunderstanding: Dotty from Dallas whose mother "hid the food stamps by holding [her] hand out like a fan of shame at the checkout line" and later kicked her out of the family, accusing her of being a "Commie" (p. 45). There is tongue in cheek irony, such as in "The Nguyen Twins Find Adoration in the Poetry World" (p. 40), about two vastly different poets - Joan, who has an Anglo boyfriend, publishes in respected traditional literary journals, includes in her work Vietnamese sentences "she never fails to translate" and who won the "safe ethnic poet award"; and Jesus, whose poems are "system fascist overthrow racism working class" performed on Def Poetry Jam where he mispronounces all three of the only Vietnamese words he uses in his poetry.

Numerous poems in sections 3 and 4 address racism. "Reverse Racism" (p. 59) imagines the tables being turned on whites: schools that teach only Asian-American history and suspend any student who questions it; jobs that "stick white men in middle -management hell, then put them on a pedestal as an example of how whites can be successful", and "when white men form their own groups to protect themselves, I'll accuse them of being separatists and reverse racists". "Dear Senator McCain" (p. 65) begins with a quote from the year 2000 in which the senator (who had been imprisoned and tortured by the North Vietnamese during the Vietnam war) says, "I hate the gooks. I will hate them as long as I live." The poem issues a challenge: "I am that gook waiting in your nightmare jungle / that gook in front of you with 17 items in the 10 items or less lane at the supermarket / that gook born with a grenade in his head / that gook that got a better grade than you in shop class" and ends, "Senator / what's the difference / between an Asian /and a gook / to you".

Another poem ("8 [9]", p. 93) is based on the 2006 killing of a 19-year-old Hmong American by a white policeman in Minneapolis. There is despair ("For Colored Boys in Danger of Sudden Unexplained Nocturnal Death Syndrome and All the Rest for Whom Considering Suicide Is Not Enuf ", p. 82 ). There are also poems of self-awareness, for example, of the dichotomy of an earlier ghetto life and a later "fancy college" experience ("Called [An Open Letter to Myself]", p. 76); intra-ethnic suspicion and misunderstanding ("Everyday People", p. 99); energy and pride ("Yellowbrown Babies for the Revolution", p. 86).

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The elegant widow Hélène (Edith Scob) lives alone with her faithful housekeeper in the cherished family home – a rambling country property outside of Paris. For her seventieth birthday, all her children and grandchildren come for a brief visit. Emphasizing their perpetual absence, they give her a portable telephone the mechanics of which baffle her. “You must set it up for me, before you go.”Hélène takes aside her eldest, Frédéric (Charles Berling) to explain her wishes for the estate, pointing out the most valuable art objects and emphasizing that the family should not feel tied to the old and costly house. Frédéric doesn’t want to listen; she is too young, he claims. He loves the house and assures her that the family will keep it. Moments later, the families pile into cars and race off. With the new phone still unconnected, Hélène is alone again, smoking in the evening gloom. Six months later, they gather once more for Hélène’s funeral. Single and living in the United States, Adrienne (Juliette Binoche) is sulky and rootless. Jérémie (Jérémie Renier) is entrepreneurial and is planning to live in Asia. Neither want to keep the house, and both could use the money from its sale. Frédéric is shattered by their indifference to the family and its traditions, but he cannot afford to buy them out. His wife sympathizes and waits. He loses the negotiatons. Yet, being the eldest and the only sib in France, he is forced to preside over the sale and dismantling of the property he loves. 

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In 1847, one of every six women whose babies were delivered by the medical students and supervising doctors at Allgemeine Krankenhaus (General Hospital) in Vienna died of puerperal fever (also known as childbed fever). In contrast, the incidence of this disease in women delivered by hospital midwives was dramatically lower and puerperal fever was quite rare when mothers had their babies born at home.While a few physicians (most notably Alexander Gordon and Oliver Wendell Holmes) realized that childbed fever was a contagious process, it was Semmelweis who identified the nature of the problem as stemming from the failure of obstetricians and medical students to wash their hands and change their clothing, especially after performing autopsies or doing surgery. He mandated that doctors and students wash with a disinfectant (chloride of lime) before examining any woman in labor.Despite the dramatic reduction of maternal mortality on his obstetrical unit, his ideas and methods were not well received. Semmelweis was reluctant to conduct experiments on animals to prove his theory and resisted publishing his findings in any medical journal. When he finally did write a book, The Etiology, the Concept, and the Prophylaxis of Childbed Fever, it was difficult to read and failed to impress many obstetrical experts.With his health failing and his behavior increasingly erratic and inappropriate, Semmelweis was committed to a state-run mental hospital. He died two weeks later. The official cause of death was sepsis secondary to an infection of his finger. The author is convinced, however, based on the autopsy report and findings upon exhumation of the body in 1963, that Semmelweis was beaten to death by the staff at the asylum. He may well have been suffering from Alzheimer's presenile dementia at the time.

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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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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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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.

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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.   

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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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