Citing a high percentage of Americans who live with chronic illness, an urgent call to action draws on scientific research and patient narratives to explore the role of social medial in medical advocacy, arguing that we must change attitudes about the link between health and lifestyle and provide appropriate and compassionate treatments. By the award-winning author of Life Disrupted. 25,000 first printing.
In this groundbreaking work, Susan L. Burns examines the history of leprosy in Japan from medieval times until the present. At the center of Kingdom of the Sick is the rise of Japan’s system of national leprosy sanitaria, which today continue to house more than 1,500 former patients, many of whom have spent five or more decades within them. Burns argues that long before the modern Japanese government began to define a policy toward leprosy, the disease was already profoundly marked by ethical and political concerns and associated with sin, pollution, heredity, and outcast status. Beginning in the 1870s, new anxieties about race and civilization that emanated from a variety of civic actors, including journalists, doctors, patent medicine producers, and Christian missionaries transformed leprosy into a national issue. After 1900, a clamor of voices called for the quarantine of all sufferers of the disease, and in the decades that followed bureaucrats, politicians, physicians, journalists, local communities, and leprosy sufferers themselves grappled with the place of the biologically vulnerable within the body politic. At stake in this “citizenship project” were still evolving conceptions of individual rights, government responsibility for social welfare, and the delicate balance between care and control. Refusing to treat leprosy patients as simply victims of state power, Burns recovers their voices in the debates that surrounded the most controversial aspects of sanitarium policy, including the use of sterilization, segregation, and the continuation of confinement long after leprosy had become a curable disease. Richly documented with both visual and textual sources and interweaving medical, political, social, and cultural history, Kingdom of the Sick tells an important story for readers interested in Japan, the history of medicine and public health, social welfare, gender and sexuality, and human rights.
"In this penetrating analysis of the social attitudes toward various major illnesses - chiefly tuberculosis, the scourge of the 19th century, and cancer, the terror of our own - Susan Sontag demonstrates that "illness is not a metaphor" and shows why "the healthiest way of being ill is one purified of metaphoric thinking." Once tuberculosis was identified as a bacterial infection, it ceased to be a symbol of a romantic fading away or of a sensitive or artistic temperament, and it could be treated and cured. Similarly, we must today cease to think of cancer as a mark of doom, a punishment or a sign of a repressed personality, and recognize it for what it is: one disease among many and often receptive to treatment." -- from back cover.
A NEW YORK TIMES BESTSELLER FINALIST FOR THE 2022 NATIONAL BOOK AWARD FOR NONFICTION Named one of the BEST BOOKS OF 2022 by NPR, The New Yorker, Time, and Vogue “Remarkable.” –Andrew Solomon, The New York Times Book Review "At once a rigorous work of scholarship and a radical act of empathy.”—Esquire "A ray of light into those isolated cocoons of darkness that, at one time or another, may afflict us all.” —The Wall Street Journal "Essential."—The Boston Globe A landmark exploration of one of the most consequential and mysterious issues of our time: the rise of chronic illness and autoimmune diseases A silent epidemic of chronic illnesses afflicts tens of millions of Americans: these are diseases that are poorly understood, frequently marginalized, and can go undiagnosed and unrecognized altogether. Renowned writer Meghan O’Rourke delivers a revelatory investigation into this elusive category of “invisible” illness that encompasses autoimmune diseases, post-treatment Lyme disease syndrome, and now long COVID, synthesizing the personal and the universal to help all of us through this new frontier. Drawing on her own medical experiences as well as a decade of interviews with doctors, patients, researchers, and public health experts, O’Rourke traces the history of Western definitions of illness, and reveals how inherited ideas of cause, diagnosis, and treatment have led us to ignore a host of hard-to-understand medical conditions, ones that resist easy description or simple cures. And as America faces this health crisis of extraordinary proportions, the populations most likely to be neglected by our institutions include women, the working class, and people of color. Blending lyricism and erudition, candor and empathy, O’Rourke brings together her deep and disparate talents and roles as critic, journalist, poet, teacher, and patient, synthesizing the personal and universal into one monumental project arguing for a seismic shift in our approach to disease. The Invisible Kingdom offers hope for the sick, solace and insight for their loved ones, and a radical new understanding of our bodies and our health.
NEW YORK TIMES BESTSELLER • A searing, deeply moving memoir of illness and recovery that traces one young woman’s journey from diagnosis to remission to re-entry into “normal” life—from the author of the Life, Interrupted column in The New York Times ONE OF THE BEST BOOKS OF THE YEAR: The New York Times Book Review, The Washington Post, Bloomberg, The Rumpus, She Reads, Library Journal, Booklist • “I was immersed for the whole ride and would follow Jaouad anywhere. . . . Her writing restores the moon, lights the way as we learn to endure the unknown.”—Chanel Miller, The New York Times Book Review “Beautifully crafted . . . affecting . . . a transformative read . . . Jaouad’s insights about the self, connectedness, uncertainty and time speak to all of us.”—The Washington Post In the summer after graduating from college, Suleika Jaouad was preparing, as they say in commencement speeches, to enter “the real world.” She had fallen in love and moved to Paris to pursue her dream of becoming a war correspondent. The real world she found, however, would take her into a very different kind of conflict zone. It started with an itch—first on her feet, then up her legs, like a thousand invisible mosquito bites. Next came the exhaustion, and the six-hour naps that only deepened her fatigue. Then a trip to the doctor and, a few weeks shy of her twenty-third birthday, a diagnosis: leukemia, with a 35 percent chance of survival. Just like that, the life she had imagined for herself had gone up in flames. By the time Jaouad flew home to New York, she had lost her job, her apartment, and her independence. She would spend much of the next four years in a hospital bed, fighting for her life and chronicling the saga in a column for The New York Times. When Jaouad finally walked out of the cancer ward—after countless rounds of chemo, a clinical trial, and a bone marrow transplant—she was, according to the doctors, cured. But as she would soon learn, a cure is not where the work of healing ends; it’s where it begins. She had spent the past 1,500 days in desperate pursuit of one goal—to survive. And now that she’d done so, she realized that she had no idea how to live. How would she reenter the world and live again? How could she reclaim what had been lost? Jaouad embarked—with her new best friend, Oscar, a scruffy terrier mutt—on a 100-day, 15,000-mile road trip across the country. She set out to meet some of the strangers who had written to her during her years in the hospital: a teenage girl in Florida also recovering from cancer; a teacher in California grieving the death of her son; a death-row inmate in Texas who’d spent his own years confined to a room. What she learned on this trip is that the divide between sick and well is porous, that the vast majority of us will travel back and forth between these realms throughout our lives. Between Two Kingdoms is a profound chronicle of survivorship and a fierce, tender, and inspiring exploration of what it means to begin again.
This life-affirming, instructive, and thoroughly inspiring book is a must-read for anyone who is - or who might one day be - sick. It can also be the perfect gift of guidance, encouragement, and uplifting inspiration to family, friends, and loved ones struggling with the many terrifying or disheartening life changes that come so close on the heels of a diagnosis of a chronic condition or life-threatening illness. Authentic and graceful, How to be Sick reminds us of our limitless inner freedom, even under high degrees of suffering and pain. The author - who became ill while a university law professor in the prime of her career - tells the reader how she got sick and, to her and her partner's bewilderment, stayed that way. Toni had been a longtime meditator, going on long meditation retreats and spending many hours rigorously practicing, but soon discovered that she simply could no longer engage in those difficult and taxing forms. She had to learn ways to make "being sick" the heart of her spiritual practice - and through truly learning how to be sick, she learned how, even with many physical and energetic limitations, to live a life of equanimity, compassion, and joy. And whether we ourselves are ill or not, we can learn these vital arts from Bernhard's generous wisdom in How to Be Sick.
Invisible chronic illness (ICI) can manifest itself in chronic fatigue, chronic pain, and many other miseries that are often perceived and dismissed negatively, even by doctors. This book offers "an invaluable source of help and comfort" (Katharina Dalton, M.D.) to those who suffer from ICI. "Today" feature.
Twenty-seven-year-old Laurie Edwards is one of 125 million Americans who have a chronic illness, in her case a rare genetic respiratory disease. Because of medical advances in the treatment of serious childhood diseases, 600,000 chronically ill teens enter adulthood every year who decades ago would not have survived-they and people diagnosed in adulthood face the same challenges of college, career, and starting a family as others in their twenties and thirties, but with the added circumstance of having chronic illness. Life Disrupted is a personal and unflinching guide to living well with a chronic illness: managing your own health care without letting it take over your life, dealing with difficult doctors and frequent hospitalizations, having a productive and satisfying career that accommodates your health needs, and nurturing friendships and a loving, committed relationship regardless of recurring health problems. Laurie Edwards also addresses the particular needs of people who have more than one chronic illness or who are among the twenty-five million Americans with a rare disorder. She shares her own story and the experiences of others with chronic illness, as well as advice from life coaches, employment specialists, and health professionals. Reading Life Disrupted is like having a best friend and mentor who truly does know what you're going through.
Virginia Woolf’s daring essay on how illness transforms our perception, plus an essay by Woolf’s mother from the caregiver’s perspective: “Revelatory.” —Booklist This new publication of “On Being Ill” with “Notes from Sick Rooms” presents Virginia Woolf and her mother, Julia Stephen, in textual conversation for the first time in literary history. In the poignant and humorous essay “On Being Ill,” Woolf observes that though illness is part of every human being’s experience, it is not celebrated as a subject of great literature in the way that love and war are embraced by writers and readers. We must, Woolf says, invent a new language to describe pain. Illness, she observes, enhances our perceptions and reduces self-consciousness; it is “the great confessional.” Woolf discusses the taboos associated with illness, and she explores how it changes our relationship to the world around us. “Notes from Sick Rooms,” meanwhile, addresses illness from the caregiver’s perspective. With clarity, humor, and pathos, Julia Stephen offers concrete information that remains useful to nurses and caregivers today. This edition also includes an introduction to “Notes from Sick Rooms” by Mark Hussey, founding editor of Woolf Studies Annual, and a poignant afterword by Rita Charon, MD, founder of the field of Narrative Medicine. In addition, Hermione Lee’s brilliant introduction to “On Being Ill” offers a superb overview of Woolf’s life and writing. “Woolf’s inquiry into illness and its impact on the mind is paired with her mother’s observations about caring for the body. Julia Stephen . . . had no professional training but took to heart Florence Nightingale’s precept that every woman is a nurse and emulated Nightingale’s best-selling Notes on Nursing with her own “Notes from Sick Rooms.” In this long-overlooked, precise, and piquant little manual, Stephen is compassionate and ironic, observing that everyone deserves to be tenderly nursed while addressing the small evil of crumbs in bed. This unprecedented literary reunion of mother and daughter is stunning on many fronts, but physician and literary scholar Rita Charon focuses on the essentials in her astute afterword, writing that Woolf’s perspective as a patient and Stephen’s as a nurse together illuminate the goal of care—to listen, to recognize, to imagine, to honor.” —Booklist “Woolf and Stephen will certainly change the way readers think of illness.” —Publishers Weekly
Are germs gross, or great? Sick Simon learns how to be health-conscious during cold and flu season in this clever picture book from the author-illustrator of The Great Lollipop Caper. Simon is going to have the best week ever. Who cares if he has a cold? He goes to school anyway, and sneezes everywhere, and coughs on everyone, and touches everything. Germs call him a hero! Everyone else calls him…Sick Simon. When will it end? How far will he go? Will the germs take over, or can Sick Simon learn to change his ways?
