It's Not Yet Dark
Simon Fitzmaurice - 2014
He was given four years to live. In 2010, in a state of lung-function collapse, Simon knew with crystal clarity that now was not his time to die. Against all prevailing medical opinion, he chose to ventilate in order to stay alive.Here, the young filmmaker, a husband and father of five small children draws us deeply into his inner world. Told in simply expressed and beautifully stark prose - in the vein of such memoirs as Jean-Dominique Bauby's The Diving Bell and the Butterfly - the result is an astonishing journey into a life which, though brutally compromised, is lived more fully and in the moment than most, revealing at its core the power of love its most potent.Written using an eye-gaze computer, It's Not Yet Dark is an unforgettable book about relationships and family, about what connects and separates us as people and, ultimately, about what it means to be alive.
Until I Say Goodbye: A Book about Living
Susan Spencer-Wendel - 2012
She was forty-four years old, with a devoted husband and three young children, and she had only one year of health remaining.Susan decided to live that year with joy.She quit her job as a journalist and spent time with her family. She built an outdoor meeting space for friends in her backyard. And she took seven trips with the seven most important people in her life. As her health declined, Susan journeyed to the Yukon, Hungary, the Bahamas, and Cyprus. She took her sons to swim with dolphins, and her teenage daughter, Marina, to Kleinfeld's bridal shop in New York City to see her for the first and last time in a wedding dress.She also wrote this book. No longer able to walk or even to lift her arms, she tapped it out letter by letter on her iPhone using only her right thumb, the last finger still working.However, Until I Say Good-Bye is not angry or bitter. It is sad in parts--how could it not be?--but it is filled with Susan's optimism, joie de vivre, and sense of humor. It is a book about life, not death. One that, like Susan, will make everyone smile.From the Burger King parking lot where she cried after her diagnosis to a snowy hot spring near the Arctic Circle, from a hilarious family Christmas disaster to the decrepit monastery in eastern Cyprus where she rediscovered her heritage, Until I Say Good-Bye is not only Susan Spencer-Wendel's unforgettable gift to her loved ones--a heartfelt record of their final experiences together--but an offering to all of us: a reminder that "every day is better when it is lived with joy."
My Lobotomy: A Memoir
Howard Dully - 2007
Yet somehow, this normal boy became one of the youngest people on whom Dr. Walter Freeman performed his barbaric transorbital—or ice pick—lobotomy.Abandoned by his family within a year of the surgery, Howard spent his teen years in mental institutions, his twenties in jail, and his thirties in a bottle. It wasn’t until he was in his forties that Howard began to pull his life together. But even as he began to live the “normal” life he had been denied, Howard struggled with one question: Why?“October 8, 1960. I gather that Mrs. Dully is perpetually talking, admonishing, correcting, and getting worked up into a spasm, whereas her husband is impatient, explosive, rather brutal, won’t let the boy speak for himself, and calls him numbskull, dimwit, and other uncomplimentary names.”There were only three people who would know the truth: Freeman, the man who performed the procedure; Lou, his cold and demanding stepmother who brought Howard to the doctor’s attention; and his father, Rodney. Of the three, only Rodney, the man who hadn’t intervened on his son’s behalf, was still living. Time was running out. Stable and happy for the first time in decades, Howard began to search for answers. “December 3, 1960. Mr. and Mrs. Dully have apparently decided to have Howard operated on. I suggested [they] not tell Howard anything about it.”Through his research, Howard met other lobotomy patients and their families, talked with one of Freeman’s sons about his father’s controversial life’s work, and confronted Rodney about his complicity. And, in the archive where the doctor’s files are stored, he finally came face to face with the truth.Revealing what happened to a child no one—not his father, not the medical community, not the state—was willing to protect, My Lobotomy exposes a shameful chapter in the history of the treatment of mental illness. Yet, ultimately, this is a powerful and moving chronicle of the life of one man. Without reticence, Howard Dully shares the story of a painfully dysfunctional childhood, a misspent youth, his struggle to claim the life that was taken from him, and his redemption.
Don't Kill the Birthday Girl: Tales from an Allergic Life
Sandra Beasley - 2011
Like twelve million other Americans, Sandra Beasley suffers from food allergies. Her allergies—severe and lifelong—include dairy, egg, soy, beef, shrimp, pine nuts, cucumbers, cantaloupe, honeydew, mango, macadamias, pistachios, cashews, swordfish, and mustard. Add to that mold, dust, grass and tree pollen, cigarette smoke, dogs, rabbits, horses, and wool, and it’s no wonder Sandra felt she had to live her life as “Allergy Girl.” When butter is deadly and eggs can make your throat swell shut, cupcakes and other treats of childhood are out of the question—and so Sandra’s mother used to warn guests against a toxic, frosting-tinged kiss with “Don’t kill the birthday girl!” It may seem that such a person is “not really designed to survive,” as one blunt nutritionist declared while visiting Sandra’s fourth-grade class. But Sandra has not only survived, she’s thrived—now an essayist, editor, and award-winning poet, she has learned to navigate a world in which danger can lurk in an unassuming corn chip. Don’t Kill the Birthday Girl is her story. With candor, wit, and a journalist’s curiosity, Sandra draws on her own experiences while covering the scientific, cultural, and sociological terrain of allergies. She explains exactly what an allergy is, describes surviving a family reunion in heart-of-Texas beef country with her vegetarian sister, delves into how being allergic has affected her romantic relationships, exposes the dark side of Benadryl, explains how parents can work with schools to protect their allergic children, and details how people with allergies should advocate for themselves in a restaurant. A compelling mix of memoir, cultural history, and science, Don’t Kill the Birthday Girl is mandatory reading for the millions of families navigating the world of allergies—and a not-to-be-missed literary treat for the rest of us.
Gratitude
Oliver Sacks - 2015
I have loved and been loved. I have been given much and I have given something in return. Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure.” —Oliver SacksNo writer has succeeded in capturing the medical and human drama of illness as honestly and as eloquently as Oliver Sacks. During the last few months of his life, he wrote a set of essays in which he movingly explored his feelings about completing a life and coming to terms with his own death. “It is the fate of every human being,” Sacks writes, “to be a unique individual, to find his own path, to live his own life, to die his own death.”Together, these four essays form an ode to the uniqueness of each human being and to gratitude for the gift of life.
The Undying
Anne Boyer - 2019
For a single mother living paycheck to paycheck who had always been the caregiver rather than the one needing care, the catastrophic illness was both a crisis and an initiation into new ideas about mortality and the gendered politics of illness.A twenty-first-century Illness as Metaphor, as well as a harrowing memoir of survival, The Undying explores the experience of illness as mediated by digital screens, weaving in ancient Roman dream diarists, cancer hoaxers and fetishists, cancer vloggers, corporate lies, John Donne, pro-pain ”dolorists,” the ecological costs of chemotherapy, and the many little murders of capitalism. It excoriates the pharmaceutical industry and the bland hypocrisies of ”pink ribbon culture” while also diving into the long literary line of women writing about their own illnesses and ongoing deaths: Audre Lorde, Kathy Acker, Susan Sontag, and others.A genre-bending memoir in the tradition of The Argonauts, The Undying will break your heart, make you angry enough to spit, and show you contemporary America as a thing both desperately ill and occasionally, perversely glorious.
The Bright Hour: A Memoir of Living and Dying
Nina Riggs - 2017
They are promises. They are the only way to walk from one night to the other."Nina Riggs was just thirty-seven years old when initially diagnosed with breast cancer--one small spot. Within a year, the mother of two sons, ages seven and nine, and married sixteen years to her best friend, received the devastating news that her cancer was terminal.How does one live each day, "unattached to outcome"? How does one approach the moments, big and small, with both love and honesty?Exploring motherhood, marriage, friendship, and memory, even as she wrestles with the legacy of her great-great-great grandfather, Ralph Waldo Emerson, Nina Riggs's breathtaking memoir continues the urgent conversation that Paul Kalanithi began in his gorgeous When Breath Becomes Air. She asks, what makes a meaningful life when one has limited time?Brilliantly written, disarmingly funny, and deeply moving, The Bright Hour is about how to love all the days, even the bad ones, and it's about the way literature, especially Emerson, and Nina's other muse, Montaigne, can be a balm and a form of prayer. It's a book about looking death squarely in the face and saying "this is what will be."Especially poignant in these uncertain times, The Bright Hour urges us to live well and not lose sight of what makes us human: love, art, music, words.
The Sound of a Wild Snail Eating
Elisabeth Tova Bailey - 2010
While an illness keeps her bedridden, Bailey watches a wild snail that has taken up residence on her nightstand. As a result, she discovers the solace and sense of wonder that this mysterious creature brings and comes to a greater understanding of her own confined place in the world. Intrigued by the snail’s molluscan anatomy, cryptic defenses, clear decision making, hydraulic locomotion, and mysterious courtship activities, Bailey becomes an astute and amused observer, providing a candid and engaging look into the curious life of this underappreciated small animal. Told with wit and grace, The Sound of a Wild Snail Eating is a remarkable journey of survival and resilience, showing us how a small part of the natural world illuminates our own human existence and provides an appreciation of what it means to be fully alive.
The Lady's Handbook for Her Mysterious Illness
Sarah Ramey - 2020
Worse, as they failed to cure her, they hinted that her devastating symptoms were psychological.The Lady's Handbook for Her Mysterious Illness is a memoir with a mission, to help the millions of (mostly) women who suffer from unnamed or misunderstood conditions.Ramey's pursuit of a diagnosis and cure for her own mysterious illness is a medical mystery that she says reveals a new understanding of today's chronic illnesses as ecological in nature, driven by modern changes to the basic foundations of health, from the quality of our sleep, diet, and social connection to the state of our microbiomes.
Final Exam: A Surgeon's Reflections on Mortality
Pauline W. Chen - 2006
What she did not count on was how much death would be a part of her work. Almost immediately, Chen found herself wrestling with medicine’s most profound paradox, that a profession premised on caring for the ill also systematically depersonalizes dying. Final Exam follows Chen over the course of her education, training, and practice as she grapples at strikingly close range with the problem of mortality, and struggles to reconcile the lessons of her training with her innate knowledge of shared humanity, and to separate her ideas about healing from her fierce desire to cure.From her first dissection of a cadaver in gross anatomy to the moment she first puts a scalpel to a living person; from the first time she witnesses someone flatlining in the emergency room to the first time she pronounces a patient dead, Chen is struck by her own mortal fears: there was a dying friend she could not call; a young patient’s tortured death she could not forget; even the sense of shared kinship with a corpse she could not cast aside when asked to saw its pelvis in two. Gradually, as she confronts the ways in which her fears have incapacitated her, she begins to reject what she has been taught about suppressing her feelings for her patients, and she begins to carve out a new role for herself as a physician and as human being. Chen’s transfixing and beautiful rumination on how doctors negotiate the ineluctable fact of death becomes, in the end, a brilliant questioning of how we should live.Moving and provocative, motored equally by clinical expertise and extraordinary personal grace, this is a piercing and compassionate journey into the heart of a world that is hidden and yet touches all of our lives. A superb addition to the best medical literature of our time.
Look Me in the Eye: My Life with Asperger's
John Elder Robison - 2007
It was no wonder he gravitated to machines, which could, at least, be counted on.After fleeing his parents and dropping out of high school, his savant-like ability to visualize electronic circuits landed him a gig with KISS, for whom he created their legendary fire-breathing guitars. Later, he drifted into a “real” job, as an engineer for a major toy company. But the higher Robison rose in the company, the more he had to pretend to be “normal” and do what he simply couldn’t: communicate. It wasn’t worth the paycheck.It was not until he was forty that an insightful therapist told him he had the form of autism called Asperger’s syndrome. That understanding transformed the way Robison saw himself—and the world.Look Me in the Eye is the moving, darkly funny story of growing up with Asperger’s at a time when the diagnosis simply didn’t exist. A born storyteller, Robison takes you inside the head of a boy whom teachers and other adults regarded as “defective,” who could not avail himself of KISS’s endless supply of groupies, and who still has a peculiar aversion to using people’s given names (he calls his wife “Unit Two”). He also provides a fascinating reverse angle on the younger brother he left at the mercy of their nutty parents—the boy who would later change his name to Augusten Burroughs and write the bestselling memoir Running with Scissors.Ultimately, this is the story of Robison’s journey from his world into ours, and his new life as a husband, father, and successful small business owner—repairing his beloved high-end automobiles. It’s a strange, sly, indelible account—sometimes alien, yet always deeply human.
Mortality
Christopher Hitchens - 2012
As he would later write in the first of a series of award-winning columns for "Vanity Fair," he suddenly found himself being deported "from the country of the well across the stark frontier that marks off the land of malady." Over the next eighteen months, until his death in Houston on December 15, 2011, he wrote constantly and brilliantly on politics and culture, astonishing readers with his capacity for superior work even in extremis.Throughout the course of his ordeal battling esophageal cancer, Hitchens adamantly and bravely refused the solace of religion, preferring to confront death with both eyes open. In this account of his affliction, he describes the torments of illness, discusses its taboos, and explores how disease transforms experience and changes our relationship to the world around us. By turns personal and philosophical, Hitchens embraces the full panoply of human emotions as cancer invades his body and compels him to grapple with the enigma of mortality.
Working Stiff: Two Years, 262 Bodies, and the Making of a Medical Examiner
Judy Melinek - 2014
Judy Melinek began her training as a New York City forensic pathologist. With her husband T.J. and their toddler Daniel holding down the home front, Judy threw herself into the fascinating world of death investigation, performing autopsies, investigating death scenes, counseling grieving relatives. Working Stiff chronicles Judy's two years of training, taking readers behind the police tape of some of the most harrowing deaths in the Big Apple, including a firsthand account of the events of September 11, the subsequent anthrax bio-terrorism attack, and the disastrous crash of American Airlines flight 587.Lively, action-packed, and loaded with mordant wit, Working Stiff offers a firsthand account of daily life in one of America's most arduous professions, and the unexpected challenges of shuttling between the domains of the living and the dead. The body never lies, and through the murders, accidents, and suicides that land on her table, Dr. Melinek lays bare the truth behind the glamorized depictions of autopsy work on shows like CSI and Law and Order to reveal the secret story of the real morgue.
Brain on Fire: My Month of Madness
Susannah Cahalan - 2012
Days earlier, she had been on the threshold of a new, adult life: at the beginning of her first serious relationship and a promising career at a major New York newspaper. Now she was labeled violent, psychotic, a flight risk. What happened?In a swift and breathtaking narrative, Cahalan tells the astonishing true story of her descent into madness, her family’s inspiring faith in her, and the lifesaving diagnosis that nearly didn’t happen.
Confessions of an American Doctor: A true story of greed, ego and loss of ethics
Max Kepler - 2017
At the time of my arrest, I was a thirty-seven year old Harvard graduate with medical and post-doctoral degrees. I attended one of the finest residency and fellowship training programs in the world at the University of California, San Francisco. I played two sports in college, earned awards at every level of education and training, had wonderful friends and a beautiful three-year-old daughter. Having grown up the son of a restaurant manager and a housewife, I had transcended the humble beginnings of a small Midwestern town to become the quintessential American Dream.Or so I thought. But with my arrest on felony importation charges, everything I had worked so hard for was swept away and the entire trajectory of my life was indelibly altered. I would embark on a three year battle not only for my medical license, but also for my freedom. This journey would lead to intense personal introspection, and in that process, I would discover with ugliness, there was also beauty, and with punishment, mercy.There are many reasons I have written this manuscript, with one of the most important being that I hoped my story would resonate with others who have gone through difficult circumstances as a consequence of a dark side of their personality. With this book, I hope to inspire others to accept and embrace the good and bad, while continually striving for improved self-understanding and acceptance.I have changed names primarily for legal purposes, but the facts are unchanged. Although the events described in the book occurred more than ten years ago, I think about them nearly every day. The shame and humiliation are ever-present. Any simple Google search of my name reveals the truth, and that truth has affected me over and over, despite the years, as it probably should. As the judge told me that day in a federal courtroom, "You have betrayed the public's trust." This is my confessional.