Living Proof: A Medical Mutiny by Michael Gearin-Tosch (2002)

"I was told I had cancer and that I must expect to die soon. Almost eight years later I still do my job and enjoy life. I have not had conventional treatment. Did my cancer simply disappear? Did I do nothing? Far from it. A number of things happened, some by accident, most by design."

Michael Gearin-Tosh is diagnosed with cancer at the age of fifty-four. The doctors urge immediate treatment. He refuses. Intuitively, not on the basis of reason. But as the days pass, Gearin-Tosh falls back on his habits as a scholar of literature. He begins to probe the experts' words and the meaning behind medical phrases. He tries to relate what each doctor says -- and does not say -- to the doctor's own temperament. And the more questions he asks, the more adamant his refusal to be hurried to treatment.

The delay is a high-risk gamble. He listens to much advice, especially that of three women friends, each with a different point of view, one a doctor. They challenge him. They challenge medical advice. They challenge one another. On no occasion do they speak with one voice. He also turns to unexpected guides within his own memory and in the authors he loves, from Shakespeare and Chekhov to Jean Renoir, Arthur Miller, and Vaclav Havel.

In the end, he chooses not to have chemotherapy but to combat his cancer largely through nutrition, vitamin supplements, an ancient Chinese breathing exercise with imaginative visualizations, and acupuncture.

No how-to book or prescriptive health guide, "Living Proof" is a celebration of human existence and friendship, a story of how a man steers through conflicting advice, between depression and seemingly inescapable rationalism, between the medicine he rejects and the doctors he honors.

Clear-eyed and unflinching, Gearin-Tosh even includes his own medical history, "The Case of the .005% Survivor"; explores general questions about cancer; and examines the role of individual temperament on medical attitudes, the choice of treatments, and, of course, survival.

This title can be purchased from Abebooks.com starting at one dollar plus shipping.

Life in the Balance by Thomas Graboys (2008)

At the age of 49, Dr. Thomas Graboys had reached the pinnacle of his career and was leading a charmed life. A nationally renowned Boston cardiologist popular for his attention to the hearts and souls of his patients, Graboys was part of “The Cardiology Dream Team” summoned to treat Boston Celtics star Reggie Lewis after he collapsed on the court in 1993. He had a beautiful wife, two wonderful daughters, positions on both the faculty of Harvard Medical School and the staff of Boston’s Brigham and Women’s Hospital, and a thriving private practice.

Today, Grayboys is battling a particularly aggressive form of Parkinson’s disease and progressive dementia, and can no longer see patients or give rounds. He is stooped, and shuffles when he walks, the gait of a man much older than his 63 years. And, although he is now remarried to a lovely woman, he lost the mother of his children to cancer in 1998. Despite the physical, mental and emotional toll he battles daily, Graboys continues his life-long mission of caring for the world one human being at a time by telling his story so that others may find comfort, inspiration, or validation in their own struggles.

His is not a sugar-coated story with a silver lining; brutally honest and direct, this is an unflinching memoir of a devastating illness as only a consummate physician could write it. One can’t help but imagine what Dr. Graboys, the healer, would say to Tom Graboys, the Parkinson’s patient—a face-to-face scene imagined in this inspiring book. In his joint roles, Thomas Graboys finds a way to convey hope, optimism and an appreciation of what it means to be truly alive.

Abebooks.com carries this title starting at a relatively inexpensive price.

Heartsounds by Martha Lear (1980)

A moving account of a medical drama and a medical failure records the observations of surgeon Harold Lear, who, stricken by a series of coronaries, endured open-heart surgery and mysterious postsurgical complications before dying. Poignant and moving. A heard book to read, but an important one.

Abebooks.com carries this title starting at one dollar plus shipping.

Death Be Not Proud by John Gunther (1948)

One of the first modern pathographies. “Johnny Gunther was only seventeen years old when he died of a brain tumor. During the months of his illness, everyone near him was unforgettably impressed by his level-headed courage, his wit and quiet friendliness, and, above all, his unfaltering patience through times of despair. This deeply moving book is a father's memoir of a brave, intelligent, and spirited boy."
DJE: This is a classic that is well worth reading.

Available at Abebooks.com starting at one dollar plus shipping.

Closing the Chart by Steven Hsi (2004)

Dr. Steven D. Hsi, a family physician and father of two young sons, was diagnosed in 1995 with a rare coronary disease that caused his death five years later at the age of forty-four. Throughout his ordeals as a patient, including three open-heart surgeries, Dr. Hsis outlook on the teaching and practice of medicine changed. In 1997 he began a journal intended for publication after his death. Written with the assistance of newspaper columnist Jim Belshaw and completed posthumously by Hsis widow, Beth Corbin-Hsi, Dr. Hsis writings urge his colleagues to become healers, to look at their patients as human beings with spiritual as well as physical lives.

"Every patient should read it, if only to be made aware that they are not alone with their thoughts. Every spouse of a patient should read it. . . . Every medical student and physician should read it to learn that the biology of the disease is really just a small part of the illness" ~John Saiki, M.D., Medical Oncology, University of New Mexico

"Dr. Steven Hsi asks his fellow doctors to be more than physicians. He asks them to be healers. He says that when he thinks of healers, he sees traditional medicine men, people who are integral parts of their communities. They are in touch physically and spiritually with the people they serve."~ Tony Hillerman

Here is a review I wrote a few years back: Closing the Chart Review

"Closing the Chart" can be found inexpensively at Abebooks.com

Cancer Vixen by Marisa Acocella Marchetto (2006)

“What happens when a shoe-crazy, lipstick-obsessed, pasta-slurping, fashion-fanatic, madly-in-love, about-to-get married, big-city-girl cartoonist with a fabulous life finds . . . a lump in her breast?” That’s the question that sets this funny, powerful and poignant graphic memoir in motion. In vivid colour and with a taboo-breaking sense of humour, Marisa Marchetto tells the story of her 11-month, ultimately triumphant bout with breast cancer – from diagnosis to cure, and every challenging step in between. But Cancer Vixen is about more than surviving an illness. It is a portrait of one woman’s supercharged life in Manhattan, and a wonderful love story. Marisa, self-described “terminal bachelorette” meets her Prince Charming in Silvano, owner of the chic downtown trattoria Da Silvano. A month before their wedding, she receives her diagnosis. She wonders: How will he react to this news? How will my world change? Will I even survive? And . . . what about my hair? From raucous New Yorker staff lunches and the star-studded crowd at Silvano’s restaurant, to the rainbow pumps Marisa wears to chemotherapy, Cancer Vixen is a total original. Her wit and courage are an inspiration – she’s a cancer vixen, not its victim: “Cancer,” she says, “I’m going to kick your butt! And I’m going to do it in killer five-inch heels!”  This is an incredible graphic novel.

Abebooks.com has Cancer Vixen available starting at one dollar plus shipping.

Autobiography of a Face by Lucy Grealy (1994)

"I spent five years of my life being treated for cancer, but since then I've spent fifteen years being treated for nothing other than looking different from everyone else. It was the pain from that, from feeling ugly, that I always viewed as the great tragedy of my life. The fact that I had cancer seemed minor in comparison."

At age nine, Lucy Grealy was diagnosed with a potentially terminal cancer. When she returned to school with a third of her jaw removed, she faced the cruel taunts of classmates. In this strikingly candid memoir, Grealy tells her story of great suffering and remarkable strength without sentimentality and with considerable wit. Vividly portraying the pain of peer rejection and the guilty pleasures of wanting to be special, Grealy captures with unique insight what it is like as a child and young adult to be torn between two warring impulses: to feel that more than anything else we want to be loved for who we are, while wishing desperately and secretly to be perfect.

Available from Abebooks.com starting at one dollar plus shipping.

Ann Patchett's Truth and Beauty is a moving memoir about Patchett's friendship with Grealy that began when they were college students.

At the Will of the Body: Reflections of Illness by Arthur Frank (1991)

In this deeply affecting memoir, Arthur W. Frank explores the events of illness from within: the transformation from person to patient, the pain, the wonder, and the ceremony of recovery. To illuminate what illness can teach us about life, Frank draws upon his own encounters with serious illness -- a heart attack at age thirty-nine and, a year later, a diagnosis of cancer. In poignant and clear prose, he offers brilliant insights into what happens when our bodies and emotions are pushed to extremes. Ultimately, he examines what it means to be human.

This was one of the first pathographies I read, and even to day, one of the most instructive and educational.

Frank feels that “illness is an opportunity, though a dangerous one… Critical illness offers the experience of being taken to the threshold of life, from which you can see where your life could end. From that vantage point you are both forced and allowed to think in new ways about the value of your life… Illness takes away parts of your life, but in doing so it gives you the opportunity to choose the life you will lead, as opposed to living the one you have simply accumulated over the years.”

Can be purchased from Abebooks.com starting at one dollar.

Aidan's Way by Sam Crane (2004)

“Aidan's Way is an endlessly inspiring account of parental love and devotion, of the lessons of ancient eastern philosophy and of what it means, ultimately, to be human.

This life we're given comes in its own season and then follows its vanishing away. If you're at ease in your season, if you can dwell in its vanishing, joy and sorrow never touch you. This is what the ancients called getting free.

...Aidan's crisis had liberated me in a way. We had come close to death, had looked over the edge of the precipice, and then moved back. He would die at some point, perhaps young, maybe very young. He was profoundly disabled, even more so than he had been before. But his near-death had altered my vision. The length of his life or the physical particulars of his life were not as important as the mere fact of his life itself. He was following along in his own season, moving on the currents of the Way....

Sam Crane, a professor of Asian Studies, has to cope with more than he ever imagined when his son Aidan is born with severe disabilities. Turning to the Tao Te Ching and Chuang Tzu -- he comes to understand Aidan. Gradually, we become aware of Aidan's profound impact on others, including his father, his family and the larger community.”

Aidan's Way can be found at Abebooks.com

A Whole New Life: An Illness and a Healing by Reynolds Price (1994)

“Reynolds Price has long been one of America's most acclaimed and accomplished men of letters. This is his most intimate story yet -- a memoir as compelling as any work of the imagination.

In 1984, a large cancer was discovered in Price's spinal cord. Here, he recounts his battle to withstand and recover from this devastating affliction. He charts the first puzzling symptoms, three surgeries, the radiation that paralyzes his lower body, the occasionally comic trials of rehab, the steady rise of pain and reliance on drugs, and his discovery of biofeedback and hypnosis. Beyond the particulars, Price illuminates larger concerns, such as the gratitude he feels toward family and friends and (some) doctors, the abundant return of his powers as a writer, and the "now appalling, now astonishing grace of God." More than the portrait of one person in crisis, A Whole New Life offers honest insight, realistic encouragement, and authentic inspiration -- and stands as one of Price's crowning achievements.”

Available at Abebooks.com starting at one dollar.

A Taste of My Own Medicine by Ed Rosenbaum (1988)

Reprinted as “The Doctor” See film with William Hurt.

“There's nothing unusual about a patient venting spleen at the doctor, but in this instance the patient is a doctor. And with his forceful, measured but angry book he establishes himself as a "patient advocate," for during his own recent medical treatment, rheumatologist Rosenbaum "learned more about handling the seriously ill . . . than in 50 years of practice." His comment gives the reader pause: not only is the author a physician, his Portland, Ore., group practice includes two sons and his brother (another son and two daughters-in-law are also doctors). Rosenbaum, stricken with cancer of the larynx, kept a journal during his therapy and reading it, one wonders if sheer cussedness alone caused his cancer to go into remission. He rails against the indifference of those administering his X-ray treatments, expresses his resentment at his radiologist's lack of compassion. Rosenbaum has strong opinions as well about medicine's turn toward big-business techniques, the profit motive, cost-effectiveness; criticizes insurance carriers, Medicare and Medicaid. His rancor will be a bitter pill to the brethren." Extraordinary book, bears rereading.

Can be purchased from Abebooks starting at two dollars.

Lost Lullaby: Deborah Alecson 1995

From UC Press Material:
Lost Lullaby makes one think the unthinkable: how a loving parent can pray for the death of her child. It is Deborah Alecson's story of her daughter, Andrea, who was born after a full-term, uneventful pregnancy, weighing 7 pounds 11 ounces, perfectly formed and exquisitely featured. But an inexplicable accident at birth left her with massive and irreversible brain damage. On a vitality scale of one to ten, her initial reading was one. And so begins Deborah Alecson's heart-rending struggle to come to terms with two desperately conflicting and powerful emotions: her desire to nurture and love Andrea, and her desire to do everything in her power to bring about her death.
Told in a mother's voice, with a simplicity and directness that heighten the intensity of the drama that unfolds, Lost Lullaby reaffirms the human dimension of what is too often an abstract and purely theoretical discussion. During the two months that Andrea spent in the Infant Intensive Care Unit, Ms. Alecson spoke with lawyers, doctors, and ethicists in an effort to understand the legal, medical and ethical implications of her plight. She recounts those discussions and describes legal cases that have a direct bearing on her own situation. Her battle--both in coming to the agonizing decision to let her child die and in convincing the medical and legal establishments to respect that decision--will engender empathy for the plight of many families, and an awareness of the need to use medical technology with restraint. It is a must-read for everyone who cares about how we make life-and-death decisions on these new medical, legal, and moral frontiers.

Can be purchased inexpensively at AbeBooks

In the Country of Illness by Robert Lipsyte 1998

From Publishers Weekly
Anyone who will ever have to negotiate the minefields of today's medical system while suffering from a serious illness or caring for a loved one will greatly welcome this outstanding guide to what the author calls the country of "Malady." Lipsyte, a prize-winning author (The Contender) and New York Times columnist, was diagnosed with testicular cancer in 1978. He presents here what he learned from that episode, and a later recurrence that helped him function within the world of illness. When his wife, Margie, who'd been his support during surgery and subsequent chemotherapy, developed breast cancer, he reentered Malady as her caregiver. Lipsyte provides highly useful material on how to elicit necessary information from physicians and nurses, ways to maximize hospital care and tips for coping with a managed care system that, according to the author, does not serve patient needs. Although the Lipsytes eventually divorced, the author remained close to his ex-wife during her long battle with terminal cancer, and his exquisitely written description of this period is deeply moving.

Can be purchased very cheaply from AbeBooks.

It's Always Something by Gilda Radner

From Library Journal (1989)
Completed before Radner's death last month, this is her personal account of her struggle with ovarian cancer and her inspiring attempt to keep an upbeat attitude during her illness. Her discussion of a Santa Monica patient support group called the Wellness Community is the best part of the book and may be of interest to cancer patients and their families. Radner's work with Saturday Night Live, her creation of such memorable characters like Emily Litella and Roseanne Roseannadanna, and her film work with husband Gene Wilder get scant attention here.

DJE: A minor classic in my view. I read this almost 20 years ago and still remember it well. It is a story of chaos: funny, with a sad ending.

Can be obtained inexpensively from AbeBooks.

The Soloist by Steve Lopez 2007

This is an extraordinary and moving book about a homeless schizophrenic street musician in L.A. If you pick it up, you will not be able to put it down.

Also a film (to be released in April 2009)

Review from Amazon
Starred Review. Scurrying back to his office one day, Lopez, a columnist for the L.A. Times, is stopped short by the ethereal strains of a violin. Searching for the sound, he spots a homeless man coaxing those beautiful sounds from a battered two-string violin. When the man finishes, Lopez compliments him briefly and rushes off to write about his newfound subject, Nathaniel Ayers, the homeless violinist. Over the next few days, Lopez discovers that Nathaniel was once a promising classical bass student at Juilliard, but that various pressures—including being one of a few African-American students and mounting schizophrenia—caused him to drop out. Enlisting the help of doctors, mental health professionals and professional musicians, Lopez attempts to help Nathaniel move off Skid Row, regain his dignity, develop his musical talent and free himself of the demons induced by the schizophrenia (at one point, Lopez arranges to have Ayers take cello lessons with a cellist from the L.A. Symphony). Throughout, Lopez endures disappointments and setbacks with Nathaniel's case, questions his own motives for helping his friend and acknowledges that Nathaniel has taught him about courage and humanity. With self-effacing humor, fast-paced yet elegant prose and unsparing honesty, Lopez tells an inspiring story of heartbreak and hope. (Apr.)
Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.

One Hundred Days by David Biro 2000

In 1996, at the age of 31, David Biro is preparing for his specialty examinations in dermatology and is set to share a practice with his father. But he develops a visual disturbance. After repeated testing, he is found to have the rare blood disorder of paroxysmal nocturnal hemoglobinuria. The diagnosis was problematic, but the treatment choices are overwhelming. His youngest sister is a suitable donor, and he opts for a bone marrow transplant. He realizes that his decision was influenced not only by the diagnosis, but also by his personality and his reaction to the physicians.

Advance preparations are hectic and sometimes comic, especially his deposits at a local sperm bank. The pain of the transplant and the six weeks imprisonment in a small hospital room are told in graphic detail. The athletically inclined doctor suffers many complications: exquisitely painful ulcers of the scrotum, mouth, and esophagus; inflammation of the liver; unexplained fever; drug-induced delirium; weakness and weight loss.

His parents, sisters and friends leap into action to provide round-the-clock presence, but his independent wife, Daniella, resents the invasion. While David’s body is wracked with drugs and radiation, his family and his marriage are subjected to destructive forces too. Yet all--body, family, and marriage--emerge intact, though changed, by their experience.
Commentary

This book is a physician-written autopathography. Biro knows that he is not the first doctor to learn that being a patient can be an unpleasant surprise. He recognizes that he has been sheltered, naive, privileged,

and perhaps even spoiled. He learns self-awareness and empathy from his encounter. The tale is interspersed with lucid clinical explanations of bone marrow function and transplantation, useful for those about to face this procedure.

But the power of his work comes from the superb portraits of the people whose lives are equally disrupted by his illness. The two (very real) physicians are juxtaposed: shy, cold but determined Castro; warm but cautious Luzzatto. The anxious mother and father, whose diaries are excerpted, reveal their individual fears and distinctive reasons for guilt. The remote, beautiful wife, who provides Biro’s greatest strength and joy. The title is a conscious reference to Bonaparte’s One Hundred Days, a military comeback that ended not in death, nor in victory, but in the nether world of an island prison, a state between health and disease.

This book can be bought for $1.00 plus shipping from AbeBooks.

Raising Lazarus: Robert Pensack

Raising Lazarus is Dr. Robert Pensack's personal memoir of his battle to maintain his sanity in the face of extraordinary suffering. Dr. Pensack's story chronicles his near life-long struggle with a mortal illness, Hypertrophic Cardiomyopathy, or HCM (formally known as IHSS), a genetic illness marked by abnormality of the heart muscle. After the disease claimed the life of his young mother, the adolescent Pensack--and his brother Richard, who also suffered from HCM--went on to become chronic-research heart patients at The National Institutes of Health in Bethesda, Maryland. They endured a litany of surgeries and multiple near-death experiences caused by cardiac arrests until, thirty years later, both received heart transplants that saved their lives. Remarkably--and coincidentally--Dr. Pensack played a vital role in the evolution of organ transplantation and in his own survival, helping to produce one of the anti-rejection drugs with which he himself was later treated at the time of his greatest need. From recounting his feeling of being condemned to an existence laden with insufferable burden to the hope restored through the ultimate gift of life, Raising Lazarus is Dr. Pensack's inspirational story of survival and triumph. "Extraordinary...A doctor's memoir of his struggle against his own illness...An intimate account of the remarkable medical advances of the last few decades from [a] unique point of view."--New York Times Book Review

DJE: This was an extraordinary read. Dr. Pensack spoke at Williams College ~ ten years ago.

His Brother’s Keeper: Jonathon Wiener 2004

From Jonathan Weiner, Pulitzer Prize-winning author of The Beak of the Finch, comes His Brother's Keeper -- the story of a young entrepreneur who gambles on the risky science of gene therapy to try to save his brother's life.
Stephen Heywood was twenty-nine years old when he learned that he was dying of ALS -- Lou Gehrig's disease. Almost overnight his older brother, Jamie, turned himself into a genetic engineer in a quixotic race to cure the incurable. His Brother's Keeper is a powerful account of their story, as they travel together to the edge of medicine.
The book brings home for all of us the hopes and fears of the new biology. In this dramatic and suspenseful narrative, Jonathan Weiner gives us a remarkable portrait of science and medicine today. We learn about gene therapy, stem cells, brain vaccines, and other novel treatments for such nerve-death diseases as ALS, Alzheimer's, and Parkinson's -- diseases that afflict millions, and touch the lives of many more.
It turns out that the author has a personal stake in the story as well. When he met the Heywood brothers, his own mother was dying of a rare nerve-death disease. The Heywoods' gene therapist offered to try to save her, too.

"The Heywoods' story taught me many things about the nature of healing in the new millennium," Weiner writes. "They also taught me about what has not changed since the time of the ancients and may never change as long as there are human beings -- about what Lucretius calls ‘the ever-living wound of love.'
"The Heywoods mean the whole story to me now: an allegory from the edge of medicine. A story to make us ask ourselves questions that we have to ask but do not want to ask. How much of life can we engineer? How much is permitted us?
"What would you do to save your brother's life?"

This has been made into a documentary: So Much So Fast

The Body Silent: Robert Francis Murphy 1987

Robert Murphy was a professor of anthropology at Columbia University when he became progressively paralyzed by an inoperable spinal cord tumor. His book is a personal journey through profound physical disability, an exploration of the self, and a study of the social construction of disability ["Disability is defined by society and given meaning by culture; it is a social malady" (4)]. As he writes The Body Silent he is virtually quadriplegic, hitting the keys of his computer with the eraser end of a pencil held in place by a 'universal cuff' wrapped around his palm. He is still traveling to Columbia to teach his classes.

Murphy applies the metaphor of an anthropological field trip to his experience: "This book was conceived in the realization that my long illness with a disease of the spinal cord has been a kind of extended anthropological field trip, for through it I have sojourned in a social world no less strange to me at first than those of the Amazon forests. And since it is the duty of all anthropologists to report on their travels . . . this is my accounting" (ix). Drawing not only on his own experience but also on research for which he received funding, Murphy instructs his audience in the metaphysics of his situation, and in the social as well as physical challenges of disability.
Commentary:
The Body Silent makes for uncomfortable yet riveting reading. The discomfort of entering into a detailed narrative of such severe, progressive bodily alteration is balanced for the reader by the narrator's unsentimental stance, and his effective instructional approach. Just as he had overcome alcoholism by going "cold turkey," Murphy took on his physical deterioration with eyes-open determination, a refusal to accept social limitations, and reliance on the essence of his selfhood--his mind.

His account is a highly informative study of the physical negotiation of paraplegia and quadriplegia, and of attitudes and assumptions harbored toward those who are physically "other." It is also a moving personal narrative of his changing relationship with his wife, on whom he is increasingly dependent; of his relationships with colleagues, students, and friends; of increasing isolation from his body and the larger world; of finding meaning and purpose in his altered condition. Murphy, in fact, became a pioneer for rights of the handicapped and spearheaded the initiative at Columbia to provide wheelchair access and other aids.

Murphy's narrative seems to me consistent with a classification of this text as "metapathography," a term proposed by literary critic, Peter Graham (See "Metapathography: Three Unruly Texts." Literature and Medicine, 16: 1, 70-87, 1997). According to Graham, metapathographies are "not simple personal stories of illness but artful transformations of the genre, works whose authors, relying on the distinctive professional strengths at their disposal, write themselves out of illness and suffering--and do so, finally, by looking past pathography itself" (73).

It should be noted that The Body Silent is currently out of print. It is, however, available in some libraries and from used book dealers, and is well worth the effort of tracking down. It can be purchased for $1.00 plus shipping from AbeBooks.

The Camera My Mother Gave Me by Susanna Kaysen (2001)

The author of Girl Interrupted takes the reader on a sometimes surreal journey through the health care system, meeting internists, gynecologists, alternative health experts, and many others as she explores the big issues surrounding health care in America. This is the story of a woman with vulvodynia (genital pain syndrome). It is extraordinary and worth reading for anyone interested n pain syndromes. It is short, sad, funny, poignant.
DJE wrote a review which appeared in the Archives of Dermatology Vol. 139 No. 3, p. 395-6, March 2003
"Our textbooks and journals give us second- and third-hand descriptions of the disorders we see and treat. Rarely do they provide glimpses into the souls of those who suffer. We are privy to this in the seclusion of our offices, but are often too harried to sit and listen to the cris de coeur so many, given license, would impart.

To the slim oeuvre of dermatologic pathographies, we can now add Susanna Kaysen's The Camera My Mother Gave Me, a witty, ribald, articulate chronicle of what we dub vulvodynia and our gynecologic colleagues call vulvar vestibulitis.

This slender volume can be perused in a couple or few hours and is a "must read" for all of us (with the exception of those offended by 4-letter words and graphic sexual descriptions). It chronicles the chaotic..." I will try to get a pdf of this review.

The Diving Bell and the Butterfly by Jean-Dominique Bauby (1998)

This is already a classic.
In 1995, Jean-Dominique Bauby was the editor-in-chief of French Elle, the father of two young children, a 44-year-old man known and loved for his wit, his style, and his impassioned approach to life. By the end of the year he was also the victim of a rare kind of stroke to the brainstem. After 20 days in a coma, Bauby awoke into a body which had all but stopped working: only his left eye functioned, allowing him to see and, by blinking it, to make clear that his mind was unimpaired. Almost miraculously, he was soon able to express himself in the richest detail: dictating a word at a time, blinking to select each letter as the alphabet was recited to him slowly, over and over again. In the same way, he was able eventually to compose this extraordinary book.

By turns wistful, mischievous, angry, and witty, Bauby bears witness to his determination to live as fully in his mind as he had been able to do in his body. He explains the joy, and deep sadness, of seeing his children and of hearing his aged father's voice on the phone. In magical sequences, he imagines traveling to other places and times and of lying next to the woman he loves. Fed only intravenously, he imagines preparing and tasting the full flavor of delectable dishes. Again and again he returns to an "inexhaustible reservoir of sensations," keeping in touch with himself and the life around him.

Jean-Dominique Bauby died two days after the French publication of The Diving Bell and the Butterfly. The story also has been made in to a film. While good, the latter pales in comparison t0 the book.

Two Kinds of Decay by Sarah Manguso (2008)

At twenty-one, just starting to comprehend the puzzles of adulthood, Sarah Manguso was faced with another: a wildly unpredictable disease that appeared suddenly and tore through her twenties, vanishing and then returning, paralyzing her for weeks at a time, programming her first to expect nothing from life and then, furiously, to expect everything. In this captivating story, Manguso recalls her nine-year struggle: arduous blood cleansings, collapsed veins, multiple chest catheters, the deaths of friends and strangers, addiction, depression, and, worst of all for a writer, the trite metaphors that accompany prolonged illness. A book of tremendous grace and self-awareness, The Two Kinds of Decay transcends the very notion of what an illness story can and should be.
“The events that began in 1995 might keep happening to me as long as things can happen to me. Think of deep space, through which heavenly bodies fly forever. They fly until they change into new forms, simpler forms, with ever fewer qualities and increasingly beautiful names."

Sarah Manguso has chronic idiopathic demyelinating poliradiculoneuropathy. This is a rare autoimmune disease, and her book has many "rare" and captivating insights.

When Doctors Get Sick: Henry Mandel and Howard Spiro (1987)

This book is a minor classic. In an essay in the Annals of Internal Medicine, Harvey Mandell writes: Storytelling has gained prominence in medicine, where the tales of the sick are medicalized as "pathography." Interest in "narrative," as it is called in academic circles, is equally widespread in history, where stories based on facts and re-created with imagination bring other times to life more dramatically than the dry data of economics and biography. If we physicians read more accounts of our patients' travails and, better still, talked about them with each other, we might improve the humane qualities of medical care. The chiaroscuro of conversation and narrative can so highlight the social, emotional, and economic origins of many complaints that it might even help to make medical practice more cost-effective.

We review here what the two of us learned from the stories about sick doctors that we collected a decade ago. These narratives illuminate the dilemma of impaired physicians-or wounded healers, as they have been called-that our profession must examine before others do it for us.

I read this when it came out, and it remains a favorite of mine. There are 52 short vignettes, almost all of them memorable.

The can be difficult to find. There was one copy on ABE Books for ~ $2.00 but the rest were way too expensive.

Wrongful Death: A Medical Tragedy by Sandra Gilbert (1995)

This is an angry, chaotic story of a man who died, written by his wife, an author and a poet. At times, hard to read, but all the more important, because it documents the disconnects between patients and their families and doctors.
On February 10, 1991, Elliot Gilbert, a sixty-year-old professor of English, checked into a major medical center for routine prostate surgery. Twenty-four hours later, he was pronounced dead in the recovery room. No one from the hospital has ever told his family how or why he died. In Wrongful Death his widow has produced a searingly frank account of one family's experience with a kind of medical disaster that occurs surprisingly often but is all-too-rarely discussed in a political arena dominated by concerns about the escalating costs of malpractice insurance. As her story unfolds, Sandra Gilbert describes the numbing shock into which she and her children were plunged by her husband's inexplicable death as well as the stages of grief they endured as they struggled to come to terms with their loss. But her major focus is on the process of discovery through which, with the help of friends and lawyers, they began to learn something about what had happened to Elliot. What are the implications of such a medical tragedy for the deceased and for his survivors? How does it feel to confront the possibility that a loved one has suffered what the law calls a "wrongful death"? As she examines the bewildering complexity of the legal, social, and medical questions surrounding "adverse events" like the one that killed her husband, Gilbert shows how vulnerable we all are to the power of the health-care establishment.
This book can be bought for $1.00 plus shipping from ABE Books.

The Alcoholic by Jonathan Ames

From the Amazon Review: "I sat down and read The Alcoholic from cover to cover. I immersed myself in it. Ames takes you right inside his world, the highs, the lows, the humiliating moments, and those rare moments of insight that each of us get in small doses from time to time. He avoids the temptation to slap a happily-ever-after ending on it, leaving things open and ambiguous. A great read, and the drawings add a lot."
DJE: This is an extraordinary book, a graphic novel, about alcohol and drug addiction.

Sick Girl

by Amy Silverstein
This is an incredible journey into the life of a young heart transplant patient. Sick Girl is extraordinary both for its gripping story of a medical miracle and for its unique and forceful narrator. At just twenty-four, Amy Silverstein was your typical type-A law student: smart, driven, and highly competitive. Her memoir is made all the more dramatic by the deliriously romantic bedside courtship with her devoted boyfriend, Scott (now her husband), and her uncompromising desire to become a mother. Distrustful of her doctors and insistent in her refusal to be the "grateful heart patient" she is expected to be, Amy presents a patient's perspective that is truly eye-opening and often controversial. Her shocking honesty and storytelling skills allow us to live her nightmare from the inside--an unforgettable experience that is both painfully disturbing and utterly compelling.
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