Summary:

Because this lucid, rich, and incisive book has not, as yet, been published in the United States, it has not acquired the readership it deserves. For those teaching Medical Humanities or those interested in broader or more global stories and perspectives about physician training, practice, and experiences, Helman’s most recent publication should be considered.

Part One (“Setting Out”) begins in South Africa where Helman’s family, comprised of a dozen doctors, has lived for generations and where his own medical studies occurred. As a child, he accompanied his father on rounds while other children spent holidays at the beach. Before long he discovered how hospitals, during the madness of Apartheid, were to “some extent a distorted mirror-image of the world outside” (3). Appalled by the differences in care and treatment, the keenly aware young man kept notes. His vivid observations of the harsh context of social injustices provide an unequivocal, eloquent, and disturbing critique of medicine then and there. His acute observations of physician behaviors and indigent populations in the city and in the bush contribute, as readers discover in later chapters, to the author’s expanded and compelling interests in cultural anthropology.

Part Two (“The Family Doctor”) leads to London. “After all the heat and light and space of Africa, London—with its low leaden sky and constant drizzle—was like living inside a Tupperware box, one stored deep inside a refrigerator” (47). In the 60s Helman’s migration required an adjustment to a world of technology and order, where as a family practitioner, he had become, in fact, a suburban shaman. In any society, patients wanted “relief from discomfort, relief from anxiety, a relationship of compassion and care, some explanation of what has gone wrong, and why, and a sense of order or meaning imposed on the apparent chaos of their personal suffering to help them make sense of it and to cope with it” (xvi).

Gradually Helman saw connections between the role of family physician and traditional healer: both involved an understanding of “not only a body’s internal equilibrium but also the equilibrium of the patient’s relationships with the world he or she lives in and how treatment should aim not only to treat the diseased organ but also to restore the patient’s life that equilibrium of relationships” (xvii). His encounters with patients and the stories they reveal suggest how important these often overlooked connections are and why they ought to be included in medical training and practice.

By the time readers reach Part Three ("States of the Art”), the author has moved into broader realms of thinking, in which medicine and illnesses are examined anthropologically. After 27 years of clinical practice Helman’s white coat and stethoscope are placed on a hook. Now, as a credentialed anthropologist at University College London, his larger lens allows for sustained scrutiny of the complexities, ambiguities, and nuances in such chapters as “Grand Rounds,” “Hospitals,” “Placebos,” “Third Worlds.” Helman’s range of experiences, multi-disciplinary training, intellectual conclusions, and abundant common sense argues for techno-doctors to learn from holistic practitioners. Whether devastating or humorous, the critiques reflect not just care provision but shared human capacities: the insights are thoughtful and fresh and very worthwhile.

View full annotation

Summary:

This play in eight scenes presents the fictionalized character of Alice James, sister of Henry and William James, who after a sickly childhood, succumbed at 19 to a variety of vague and recurrent illnesses that made her a lifetime invalid. She died at 43 of breast cancer.

In a series of encounters (with her nurse; her father; her brother, Henry; several Victorian female figures: Margaret Fuller, Emily Dickinson, and mythological figures from Victorian fantasy fiction and from Parsifal; and a burglar), as well as a long dramatic monologue, her various forms of internal conflict are hilariously and poignantly articulated. They converge on the implications of her recurrently deciding whether or not to get out of bed and do something, and her confusion, often discussed by biographers and critics, about her place in her brilliant family, her vocation as a woman, and her own desires.

View full annotation

Summary:

Dr. Paul Brand, who grew up son of English missionaries to South India, achieved world renown for his research on leprosy and related research on the dynamics of pain. This book, one of several of his reflections on physiology, combines autobiography, stories of research, and reflections on pain and pain management. The three topics roughly correspond to three discrete sections.

It opens with a story of the early death of a child with a rare neurological dysfunction that made her insensitive to pain. Brand's long work with victims of leprosy in India and then in Carville, Louisiana, gave him wide exposure to the consequences of life without adequate pain. Having spent 27 years in India, 25 years in England, and 27 years in the U.S. before writing this retrospective, many of his reflections include observations about cultural variables in perception of pain, how pain is communicated and managed, and how people deal philosophically with the problem of pain.

View full annotation

Summary:

In December 1995, at the age of 43, the author suffered a sudden and severe stroke in the brain stem and emerged from a coma several weeks later to find himself in a rare condition called "locked-in syndrome" (LIS). Although his mind was intact, he had lost virtually all physical control, able to move only his left eyelid. There was no hope of significant recovery. This memoir, composed and dictated the following summer, consists of Bauby's brief and poignant reflections on his condition and excursions into the realms of his memory, imagination, and dreams.

The composition of this book was an extraordinary feat in itself. Unable to write or speak, Bauby composed each passage mentally and then dictated it, letter by letter, to an amanuensis who painstakingly recited a frequency-ordered alphabet until Bauby chose a letter by blinking his left eyelid once to signify "yes." In what was likely another heroic act of will, Bauby survived just long enough to see his memoir published in the spring of 1997.

View full annotation

Summary:

Like her earlier collection, Words Like Fate and Pain (see this database), the thread of connection among these exquisite poems is the experience of chronic suffering. However the poems vary widely in focus and content, including those that touch on the intimacies of love found and lost, family relationships, musings on the road, political events, philosophical ideas, and qualities of words themselves. All open doors to an inner life deeply examined and thoughtfully lived. The poems deal frankly not only with the experiences of various kinds of pain, but with pain remembered and feared, with the mental detachment that enables one in pain not only to endure, but even at times to be playful about the business of living life in spite of ongoing suffering.

One is aware of the speaker in these poems as not only a patient, but as a writer who loves words, a woman who enters wholeheartedly into the relationships life puts in her path, and an observer with a wry wit and sharp sense of irony. Poem titles include "Cripple Time," "Trauerarbeit," "Phantom Life," "The Mind, That Ocean," "Pain as Metaphor," "Sleeping in My Notebook," "One, With Egg Roll," and "Waltzing the Gorilla."

View full annotation

Summary:

This memoir of a lifelong struggle with bipolar disorder, complicated by eating disorders and alcoholism, records the internal experiences of mania, confusion, depression, delusion, anxiety, terror, wild impatience, discouragement, and at times clarity and resolve that alternate in her life of recurrent struggle.  Diagnosed somewhat belatedly as rapid cycling type 1 bipolar disorder, her disease drove her to one disastrous coping strategy after another until she was hospitalized for her eating disorder and for cutting herself.  After years of intermittent hospitalizations and encounters with several incompetent psychiatrists as well as a few who were consistently helpful, she has come to understand exactly the kind of help she needs-at times trusting others' assessments of her condition more than her own, accepting supervision, abstaining from all alcohol-a critical factor in avoiding psychosis.

Her doctors continue to recalibrate her complicated drug therapies, and her moods and control remain precarious, but she has learned to live with a disease that seems still to be poorly understood, accept the limits it imposes, and handle it with intelligence, humility, and even at times a wry note of humor.  She has learned to accept help from the husband whose love survives recurrent unintentional abuse, and from parents and friends who remain supportive.  She ends the memoir on this note of acceptance, appending to it a list of facts and statistics about bipolar disorder designed to help situate it for the reader relative to other diseases and disorders.

View full annotation

Summary:

Each poem in this collection is preceded by brief comments both by the author/patient and by her psychiatrist.  Together the poems chronicle incidents in the interior life of a woman who has lived with schizophrenia for 35 years, been hospitalized, changed doctors and medication, undergone intense feelings of isolation, and also has experienced remarkable support and love from a twin sister and a few loyal friends.  The poems range in tone from matter-of-fact tellings of psychotic episodes to reflections on relationships, both personal and professional, that have been important in the course of treatment.  The book is organized as a chronology that traces the trajectory of diagnosis, illness, treatment and recovery; the final section is entitled "Beginning Again."  Read in sequence, they give a rich sense of the writer's life, struggles, resilience, and unusual self-awareness.  

View full annotation

Summary:

This study examines representations of feminine illness in American culture from 1840 to 1940. It argues that the figure of the invalid woman emerged in the 1840s amid significant changes in "American literature, medicine and culture," including the emergence of a specifically American literature, the professionalization and masculinization of medicine, and the "sometimes complementary, sometimes opposed" ideologies of feminism and domesticity (17).

The book discusses mid-nineteenth-century medical theories that articulated women as "biologically inferior . . . given to disease and pain" (34) before analyzing contemporary literary works by E.D.E.N. Southworth, Harriet Beecher Stowe, Nathaniel Hawthorne (see this database for annotations of The Birthmark and Rappaccini’s Daughter) Washington Irving, Edgar Allan Poe, and works by twentieth-century authors including Ellen Glasgow, Charlotte Perkins Gilman (see this database for The Yellow Wallpaper annotated by Felice Aull and also annotated by Jack Coulehan), Tillie Olsen, Edith Wharton, F. (Francis) Scott Fitzgerald (see this database for Tender Is the Night annotated by Jack Coulehan, also annotated by Pamela Moore), and Henry James. Art, advertisements, and the film, Dark Victory (see annotation) are other points of reference.

Price Herndl examines compliant and resistant uses of women as invalids; the surprisingly small changes in figures of feminine illness in response to changes in women’s rights; the links literature constructs between illness, money, work, and value; shifting theories of cure (from somatic to psychic); and the rise of germ theory in relation to fictional representations of illness. She argues that male and female fiction writers in the period she studies use feminine illness for different purposes: "What that figure signifies is kaleidoscopic, shifting to suit the political needs of its user" (218).

Invalid figures in literature and culture, Price Herndl asserts, can "divert political dis-ease into an overwhelming attention to the individual body and away from the body politic," locating people’s problems in their individual bodies and selves rather than in the oppressive aspects of their culture (220). Recurrent representations of sick women reflected the extreme unease attached to the position of women in American culture in the years 1840-1940. While her study stops at 1940, Price Herndl asserts that after World War Two and at other points when "masculine privilege seems threatened . . . illness is figured more and more often as male" (220).

View full annotation

Summary:

The meeting of John and Florence Dowell and Edward and Leonora Ashburnham in a German health spa is the center of a train of lies, deceptions, adulterous love triangles, and deaths. John Dowell, a memorably "unreliable" narrator, calls it "the saddest story I have ever heard" (7). His narrative distance stems partly from the pastness of the events, partly from his absence for some of them, but mostly from his ignorance or denial of realities as intimate as his wife's serial deceptions of him.

Heart disease is the central narrative trope, a literary device easily unpacked as a site of irony: Each of the two major characters who have a "heart" (i.e. heart condition) is faking it, in service of his/her serial "affairs du coeur." Florence fabricates her heart trouble before her marriage is ever consummated, using it to turn Dowell into a cardiac nurse and keep him out of her bedroom. Edward Ashburnham fakes his illness to escape his military post and take his latest love object (and his stoically Catholic wife) to Germany.

The extramarital romps occasioned by Dowell's solicitude for Florence's "heart" comprise the main gag of this novel's comic beginning. When the focus shifts to Edward, Leonora, and their ward Nancy Rufford, The Good Soldier becomes a tragedy of emotional sadism, sentimental martyrdom, madness, and moral exhaustion that leaves us unsure about who in this novel has a literal or figurative heart.

View full annotation

Summary:

Diagnosed in 1985 with myalgic encephalomyelitis/chronic fatigue syndrome, Susan Wendell's reflections address her struggle first with illness and then with the lasting "social and psycho-ethical" conflicts illness and disability generate in contemporary Western culture. Her specific focus on feminist theory comes from her increasing awareness that "knowledge people with disabilities have about living with bodily suffering and limitation and how their cultures treat rejected aspects of bodily life . . . did not inform theorizing about the body by non-disabled feminists and that feminist theory was consequently both incomplete and skewed toward healthy, non-disabled experience"(p.5).

A chapter on "Who is Disabled?" engages current definitions of disability, who produces them, for what purposes, and to what effect. This chapter addresses the cases of illness and aging and explores the political and other values of the category, "people with disabilities." Other chapters discuss the social construction of disability, disability and illness as stigmatized states that might be re-envisioned as "difference," the enculturation of myths about bodily control and independence, medical authority's inflection of embodiment, the importance of disability perspectives to feminist ethics, and perspectives on transcending the body.

View full annotation