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:

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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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.   

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 In his introduction, the author summarizes the history of polio’s first appearance as an epidemic in the United States, the ensuing research, subsequent applications of new information, attempts at abatement and ultimate success in the development of preventative measures.

Embedded in the successes and failures of the research applications are the details of human interactions.  Their impact on the goal of achieving near extinction of polio in America constitutes a dramatic subplot, which the historian adroitly weaves into the work.

For the reader who has only a sketchy knowledge of this important period in medical research, this history provides details of human exchanges, conflicts and resolutions necessary to bring the scientific developments to fruition.  Central among the multiple struggles rests the basic disagreement between Jonas Salk and Albert Sabin, two of the most prominent scientists working against the clock to develop the most effective and safest form of immunization.  Each new surge of the disease added to the urgency of the problem as well as to the question of the best solution.  Salk felt strongly that the immune system should be stimulated by a killed virus preparation, while Sabin was equally convinced that only the living virus could provide this need.  Each view had its own cadre of supporters and of opponents.

Funding issues also troubled those fighting the polio epidemics.  The March of Dimes is credited with raising a record $55 million in the fight against polio in early 1954, becoming the first major infectious disease battle to benefit from a concerted public awareness campaign and demonstrating the power of such volunteer driven efforts to supplement public and other private funding efforts.

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This book combines social history with personal memoir. It serves as a reflection on how the various challenges of living with chronic illness have shifted over time, and how they are still real and present for the increasing portion of the population who suffer from ills invisible to others and often hard to account for.  The book's brief treatments of cultural and medical approaches to chronic illness, from ancient practices to "patients in the digital age," provide a broad perspective against which to consider current legislative, political, medical, and personal concerns for those coping with chronic illness or disability. 

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The author is a practicing neurosurgeon, one of only two hundred or so women in this specialty which numbers about 4,500. She was the first woman to be admitted to her neurosurgery residency program. Her father was a surgeon and she was definitely influenced by him and says that, as the oldest of four children, it was always expected that she would become a doctor; but she didn't decide for sure until partway through her second year of college.

Once in medical school her decision for neurosurgery as her specialty came very easily. Oliver Sacks's writing had a significant influence on her decision. She was also influenced by her college sweetheart who became her husband and who also chose to train as a neurosurgeon. He is not practicing now and they do not have children.

Her description of her long years of training are interestingly related with many individual patient stories and also many descriptions of her teachers and peers. She takes time to describe how she views the specialty itself and its power structure and all that entails. Among the interesting chapters are two about her research years, one at the center for cognitive brain imaging at Carnegie-Mellon and one as a fellow in Epilepsy Surgery. The author was fascinated with the complexity of brain function and its relation to anatomical structure with which she was much more familiar.

Firlik found that she loved "life on the learning curve" and that her curiosity was broad. About her last year as Chief Resident she said "I have had my hand in saving lives and I have had my hand in helping to end them: I'm not talking about murder, of course. I am talking about helping people die" (227). She was able to write this book because she kept a journal during her training.

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Twelve-year old Philip is admitted to the hospital for a month of nightly infusions of amphotericin, a drug used to treat severe fungal infections. Wise beyond his years, he’s been in the hospital before and is only too familiar with its routines: the "vampires" who take blood; the candy-stripers who volunteer cheerfulness.

Four nurses welcome Philip back, teasing him about his annoying but intelligent insights and promising excellent outcomes this time. The doctors are testing a wonderful new drug that should eliminate all the horrible side effects that he had experienced in the past. But the new drug does not work, and Philip passes a miserable night. 

He feels sorry for his parents who are eager for him to receive the best of care; he puts on a smile for them and notices them putting on smiles for him. He tries to be brave for the doctor too, but surprises himself by voicing his opinion, finally making his physician understand that the new anti-side-effect drug does not work.

In the midst of yet another difficult night, Philip decides that he will refuse all future infusions. And he begins to feel well. We do not know what will happen in the morning, but one has the hopeful impression that Phillip will have his own way.

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A chorus of lab techs making symmetrical repetitive motions with microscopes, pipettes, and petri dishes opens the play. They persist in the background of the set, which is the waiting and consulting rooms of a clinic for reproductive technology.  The chief, Dr. Staiman, is not only an expert in this field of human biology — he also enjoys an international reputation (and many patents) for his genetic manipulation of orchids in a quest for perfect blooms.

Heather and Rose are both clients of the facility. Heather wants a baby and needs help to be able to conceive. Rose could actually conceive on her own; however, she is investing in expensive and painful genetic selection to avoid having a child with the same trait as her brother. His Tourette’s syndrome, she contends, ruined life for her parents and herself as well as for him.

It emerges that Heather too has Tourette’s syndrome, but she does not believe it ruined life for her family and is unafraid of having an affected child. The women must wrestle with the notion that Rose does not think someone like Heather should exist; and Heather wonders if she should be testing her own embryos.

The two clinic doctors, Blume and Staiman, offer similar services, but as an ethicist, Blume worries about the moral implications of the new technology. Heather challenges Staiman over his willingness to destroy an embryo that might become a person like herself. He seems baffled by her concern, claiming that science makes perfection possible and that the decision should belong to the parent.

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Five Days at Memorial is the book length expansion  of the New York Times Sunday Magazine article that the author, a Pulitzer Prize-winning physician-journalist, published in 2009. The book, the result of years of research and literally hundreds of interviews, chronicles the five days (August 28 to September 1, 2005) during which the medical staff remaining at Memorial Hospital in New Orleans tried to care for the patients -- over a hundred of them stranded, like the staff, in a hospital without water or electricity --following the flooding wrought by Hurricane Katrina.

After an 8 page prologue, the book is divided into two sections, "Deadly Choices" (228pp, the narrative of those five days) and "Reckoning" (256pp, the legal battles over the injections of midazolam (a sedative) and morphine by some of those staff and prosecuted as homicide -- what others called "euthanasia.") "Deadly Choices" relates almost hourly the five days inside Memorial from the viewpoint of patients, patients' relatives, physicians, nurses, administrators of Memorial, Tenet (the holding company owning and running Memorial) and LifeCare -- the long-term care area within Memorial devoted to the care of terminally ill and debilitated patients -- owned by a separate company. Ethical and legal questions of triage, DNR, record-keeping, accountability, communication (primarily the failure thereof) and leadership are on almost every page. At the heart of this book, however, is the mystery of the unexplained deaths of so many patients during those five days. (On September 11, 2005, a disaster mortuary team recovered 45 bodies from many different places in Memorial, page 234). The crux of the mystery of these deaths is the manner in which nine in particular died in the beleaguered hospital on the fifth and last day when, paradoxically, relief had become real and effective and inclusive, seemingly obviating such injections.

The final pages of "Reckoning" deal with the fallout - historical, ethical, political and medical -- and current events relevant to these five days and the almost two years following. (The final verdict of not guilty -- the actual wording was "Not a true bill" since it was a grand jury declining to indict the one physician, Anna Pou, and the two nurses, Cheri Landry and Lori Budo -- was rendered on July 24, 2007). There are a map of Memorial Hospital and a cast of characters at the front of the book and extensive notes, bibliography and index at the end.

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The third novel in the series of Zol Szabo, who is a public-health doctor for the Hamilton Ontario region. He is also a single parent to ten year-old, Max, because his unstable wife, Francine, could not deal with Max’s mild physical disability. His partner in life and work is now Colleen, an attractive woman detective whom he met in the first novel and who looks "like Cameron Diaz in a ponytail” (p. 140).

Teenagers at a private religious school begin to sicken and some die of a mysterious liver ailment. School authorities categorically deny any use of drugs, tobacco, or alcohol—but Szabo’s team quickly discovers that not only do the kids smoke, they prefer a cheaper form of cigarette that is manufactured and sold at cut rates by the local native community.

In the background of this stressful situation, Zol’s mother is dying of cancer, his ex-wife is threatening to visit, and Zol is caught up in a violent break-in at a Toronto museum that resulted in the theft of a precious native artifact.

The team unravels a series of epidemiological clues that point to the interaction of pesticide-tainted tobacco reacting with liver cells to produce the dangerous disease. He must then convince the unscrupulous cigarette manufacturer to stop production before the problem spreads widely. Their methods are unorthodox because they lack support from the bosses who are afraid of public and political opinion. Using clandestine photography they prove that the owner has been lying about his distribution methods.

The investigation helps to solve the older murder of a native woman scientist who had uncovered the problem and been brutally silenced.

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