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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This story centers on Lena, an immigrant teen from Ukraine, whose entire family has been traumatized and uprooted by family deaths during a violent pogrom.  Relocated to Chicago, in a tiny apartment on Bittersweet Place, the family struggles to survive in the years prior to World War I. Wineberg’s tale of disrupted life and resettlement is weighted by formidable issues that stretch beyond the ordinary range of family experiences. 

Lena, the intelligent, highly observant and resilient adolescent, narrates an unvarnished tale of survival for the extended family clustered together in this strange new world, but especially for herself.  While the family’s economic and financial circumstances are difficult, her own life is made worse by an unkind teacher, mean-spirited classmates, and hormonal impulses.  Her uncle touches her inappropriately, a favorite uncle goes mad, a cousin dies, and her mother, who is unfamiliar with the new world setting and mores, drives her crazy. 

Nevertheless, Lena is a clear-eyed survivor exhibiting a surprising toughness of character and determination. For example, her introduction to sex is far more direct than might occur with most girls of that time.  In addition, when her teacher fails cruelly to support her artistic talents, she shows amazing defiance.   When she discovers that her father has a beautiful female friend, undoubtedly a lover, her consideration of this circumstance does not render the crushing blow that might be expected.  In retrospect she is more adult, more mature than most young women might be in each of these situations.  She is a remarkable young woman with a spirited edge.

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Although Dr. Helman’s untimely death did not permit a final editing by this prodigious writer, the published edition is not a book-in-progress. An Amazing Murmur of the Heart: Feeling the Patient’s Beat represents a powerful and persistent continuation of observations and themes that grew out of medical education, close observations of physicians and patients, and his studies in anthropology. All of these forge an approach to patient care that is out of the ordinary.  

As his previous writings suggest, Helman is passionate about medicine but concerned, equally about the emergence of those who fail to listen and to those who might be called techno-doctors.  While professing his appreciation of and attraction to the magic machine or computer, he is mindful of its absence of emotion and ambiguity.  “For this post-human body is one that exists mainly in abstract, immaterial form.  It is a body that has become pure information.” (p. 11)

Chapters are comprised of stories about patients and their care providers, each representing complex facets that defy precise measurement, answers and conclusions.  As Helman steadily notes, the physician must be an archeologist:

Most patients present their doctors with only the broken shards of human life—the one labeled infection, disease, suffering and pain each of these shards is only a small part of a much larger picture….the doctor will have to try and reconstruct the rest. (p.66)

In general, the chapters illustrate first an initial review of medical history, and then specific patient stories.  Of the two, the story is most important.  “Mask of Skin,” for example, begins with an overview of skin from Vesalius to the present: largest organ, stripped bare by anatomists, penetrated by disease, later scanned and X-Rayed, tattooed, re-fitted by surgeons, etc.   That said, Helman the physician-anthropologist, moves from science to specific stories about patients whose skin may cover profound experiences, psychic and otherwise, that might be overlooked by a dermatologist.   Although skin is involved in each of that chapter’s stories, the willing physician must dig deeper in his observations and caring manner to make more profound discoveries.      

In a chapter entitle “Healing and Curing” the author describes an old friend, a practitioner who provides advice about patient care that ”was not included in his medical texts”.  Patients are more than a diagnosis dressed in clothes.  Doctors must make patients “feel seen, listened to, alive”.  Always patients should be regarded as people who happen to be sick.  From his admired colleague Helman learned to be an attentive listener  to the "tiny, trivial, almost invisible things" in patient encounters and stories. To truly heal as well as cure requires the doctor to empathise with what the patient is feeling thereby requiring both an act of imagination and of the heart.  The chapter, of course, continues with with stories that illustrate the points enunciated by his colleague and accepted by his disciple. 

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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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In the photograph, the camera frames the window of a rundown motel room on a snowy evening. Inside, a young mother in a pale green nightgown sits on the side of a bed gazing sadly at her sleeping baby curled up on the far side of the mattress.  This is one of the hauntingly beautiful images in “Brief Encounters,” a documentary about the photographer Gregory Crewdson and his project “Beneath the Roses.“

The son of a Brooklyn psychoanalyst, Crewdson and his family spent summers at a lakeside cottage near Pittsfield in western Massachusetts.  It is to this area, with its abandoned shops and dilapidated buildings, that Crewdson returns over and over again to search for settings for his intricately composed photographs.  These towns, he says in the film’s narration, “were really backdrops for a more submerged psychological drama,” one that blurs the line between reality and fiction. Crewdson approaches his photographs as if making a film, with a crew of as many as 60 people and a cast composed of the townspeople he encounters in his travels.  But unlike a film, the photographs capture a single moment in time.  For Crewdson, what happens before and after is of no interest to him. Rather, he is concerned with just that one frame, “a perfect moment.”

Crewdson creates his worlds as a way to explore his own anxieties, fears and desires.  The images he constructs are exquisitely detailed and psychologically complex, inviting multiple interpretations by viewers. An engaging narrator, he directly addresses his own fear of failure, how he struggles to overcome it and to continue working despite periods of self-doubt.

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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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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. 

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Annie Howard is beginning high school in Tacoma, Washington in 1950, four years after her father returned from World War II, having been blinded in combat.  Her mother has opened her own beauty salon as a way of coping with her husband’s disability and the loss of earning power it has meant.  Annie loves her father, and maintains a close relationship with him, but is dismayed by his recurrent depressions and his steady refusal to get a guide dog, go out into the world, and respond to invitations to volunteer with an organization that helps other veterans similarly afflicted.  As the school year begins she meets two new friends, a Dutch brother and sister—refugees whose parents were killed in the war and who now live with an aunt and uncle.  Through them, and ultimately through her father, Annie learns some hard truths about the lasting effects of trauma, about the role of acceptance in healing, and about how a more grown-up love involves willingness to accompany others through some of the darker dimensions of suffering.

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A Little Something is a story of a medical catastrophe for a family: at a baseball game, 10-year-old Justin is struck in the face by a foul ball. He seems OK initially, but he has a loose tooth. His father takes him to a dentist, where, left unattended, he has a drug reaction and loses consciousness. Paramedics take him to a hospital, but he does not wake up. He becomes the still center of the book; three circles form around him.  The closest circle includes the attending neurologist Dr. Goldstein and, of course, his parents. His mother Kath is a pediatric physician; she follows closely the medicine involved and knows well the hospital where Justin is being treated. His father Sam is an introverted financial man; he measures everything in numbers. Their marriage is stressed even before the accident. Kath’s nurse at her clinic, Jonesie, is a steady support. Granny, a Licensed Vocational Nurse, comes to watch over Justin. In a moving scene, she bathes the unconscious boy.

A second circle includes other family and friends, the clientele of Kath’s pediatric clinic, the children, and their parents. These are largely Latino, underserved in Fort Worth, Texas, of 2001. (Kath has chosen a medical specialty that earns less money than other fields—in contrast to her money-grubbing mother, who is satirically portrayed.) Next door to the clinic is a firehouse, where Justin has visited and made friends. The blue-collar firemen are public servants who help make a community work.

A third circle is less defined but contextual for the novel: country folks, like Granny, who are not intellectual but practical. They believe in keeping going no matter what, a folk wisdom of realistic, durable hope.

For three-quarters of the novel there’s suspense about Justin’s recovery. At one brief moment, Sam is sure of a turnaround when he sees (or thinks he sees) a smile on Justin’s face. For nine days Sam and Kath experience hope, anger, exhaustion, expressed rage, confusion, and continuous uncertainty.

Finally there is “the meeting,” a gathering of the doctor, the family, Kath’s faithful clinic nurse Jonesie, and Father Red, a Catholic priest from Justin’s school.  Dr. Goldstein says there is no hope for recovery and gives the medical details of Justin’s brain death, which has both anatomical and legal certainty.

Kath and Sam decide to disconnect Justin from life support and allow organ donation. When Justin must be transferred from the children’s hospital to the neighboring one, Sam carries him in his arms. A surprise ritual is an honor guard of firemen who line the path of the procession.

We read the specifics of disconnecting the vent tube, watching the heart race on the monitor, then the flat line of the still heart. Father Red reads from the Book of Common Prayer. An hour later, a helicopter takes off from the hospital with Justin’s donated heart.

An Epilogue six months later describes a Thanksgiving dinner at the firehouse. Sam and Kath are closer now, and he plans for them a trip to Hawaii. There’s has been, however, no easy “closure,” and the couple combines memories with mourning. 

            

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