Writing the Self in Illness


Book Description

Writing the Self in Illness: Reading the Experiential Through the Medical Memoir is MUP’s refreshing venture into the developing fields of Medical and Health Humanities with an aim to consider the necessity of the narrative knowledge as complementary to the contemporary notions of well-being, illness, and healthcare. Is individual happiness contingent on health and well-being? How does one find happiness in the throes of illness? In the present-day scenario, wherein medical practice is largely dominated by evidence-based understanding, diagnostic language, and problem-solving methods, the discipline of Medical Humanities emerges with a reciprocal dialogue between Humanities, Social Sciences, Health, and Medicine. The study of varied experiential narratives – literary works and unmediated accounts of patients and healthcare professionals, is foregrounded in Medical Humanities to amplify knowledge and understanding about the complexity of encounters with illness and their transformational quality in a nuanced manner. Both thought-provoking and informative, this publication brings about the anecdotal form of personal narratives in the light of medical discourses along with the specific cultural context of the narrative. The present publication seeks to be an important reading for students and academics in the field of medical humanities, health professionals or medical practitioners, as well as scholars aspiring to venture into this flourishing field.




The Invisible Kingdom


Book Description

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.




The Wounded Storyteller


Book Description

Updated second edition: “A bold and imaginative book which moves our thinking about narratives of illness in new directions.” —Sociology of Heath and Illness Since it was first published in 1995, The Wounded Storyteller has occupied a unique place in the body of work on illness. A collective portrait of a so-called “remission society” of those who suffer from illness or disability, as well as a cogent analysis of their stories within a larger framework of narrative theory, Arthur W. Frank’s book has reached a large and diverse readership including the ill, medical professionals, and scholars of literary theory. Drawing on the work of such authors as Oliver Sacks, Anatole Broyard, Norman Cousins, and Audre Lorde, as well as from people he met during the years he spent among different illness groups, Frank recounts a stirring collection of illness stories, ranging from the well-known—Gilda Radner’s battle with ovarian cancer—to the private testimonials of people with cancer, chronic fatigue syndrome, and disabilities. Their stories are more than accounts of personal suffering: They abound with moral choices and point to a social ethic. In this new edition Frank adds a preface describing the personal and cultural times when the first edition was written. His new afterword extends the book’s argument significantly, discussing storytelling and experience, other modes of illness narration, and a version of hope that is both realistic and aspirational. Reflecting on his own life during the creation of the first edition and the conclusions of the book itself, he reminds us of the power of storytelling as way to understand our own suffering. “Arthur W. Frank’s second edition of The Wounded Storyteller provides instructions for use of this now-classic text in the study of illness narratives.” —Rita Charon, author of Narrative Medicine “Frank sees the value of illness narratives not so much in solving clinical conundrums as in addressing the question of how to live a good life.” —Christianity Today




Pain Woman Takes Your Keys, and Other Essays from a Nervous System


Book Description

Rate your pain on a scale of one to ten. What about on a scale of spicy to citrus? Is it more like a lava lamp or a mosaic? Pain, though a universal element of human experience, is dimly understood and sometimes barely managed. Pain Woman Takes Your Keys, and Other Essays from a Nervous System is a collection of literary and experimental essays about living with chronic pain. Sonya Huber moves away from a linear narrative to step through the doorway into pain itself, into that strange, unbounded reality. Although the essays are personal in nature, this collection is not a record of the author's specific condition but an exploration that transcends pain's airless and constraining world and focuses on its edges from wild and widely ranging angles. Huber addresses the nature and experience of invisible disability, including the challenges of gender bias in our health care system, the search for effective treatment options, and the difficulty of articulating chronic pain. She makes pain a lens of inquiry and lyricism, finds its humor and complexity, describes its irascible character, and explores its temperature, taste, and even its beauty.




Good Days, Bad Days


Book Description

Describing how chronic illness affects one's self-image, friends, and family, this book shares the experiences of people with serious chronic illnesses, and shows how they find the strength to carry on.




On Being Ill


Book Description

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




The Wounded Self


Book Description

Takes the recent wave of German autobiographical writing on illness and disability seriously as literature, demonstrating the value of a literary disability studies approach.




Through the Shadowlands


Book Description

Julie Rehmeyer felt like she was going to the desert to die. Julie fully expected to be breathing at the end of the trip—but driving into Death Valley felt like giving up, surrendering. She’d spent years battling a mysterious illness so extreme that she often couldn’t turn over in her bed. The top specialists in the world were powerless to help, and research on her disease, chronic fatigue syndrome, was at a near standstill. Having exhausted the plausible ideas, Julie turned to an implausible one. Going against both her instincts and her training as a science journalist and mathematician, she followed the advice of strangers she’d met on the Internet. Their theory—that mold in her home and possessions was making her sick—struck her as wacky pseudoscience. But they had recovered from chronic fatigue syndrome as severe as hers. To test the theory that toxic mold was making her sick, Julie drove into the desert alone, leaving behind everything she owned. She wasn’t even certain she was well enough to take care of herself once she was there. She felt stripped not only of the life she’d known, but any future she could imagine. With only her scientific savvy, investigative journalism skills, and dog, Frances, to rely on, Julie carved out her own path to wellness—and uncovered how shocking scientific neglect and misconduct had forced her and millions of others to go it alone. In stunning prose, she describes how her illness transformed her understanding of science, medicine, and spirituality. Through the Shadowlands brings scientific authority to a misunderstood disease and spins an incredible and compelling story of tenacity, resourcefulness, acceptance, and love.




Writing the Self in Bereavement


Book Description

Winner, ICQI 2022 Outstanding Qualitative Book Award In Writing the Self in Bereavement: A Story of Love, Spousal Loss, and Resilience, Reinekke Lengelle uses her abilities as a researcher, poet, and professor of therapeutic writing to tell a heartfelt and fearless story about her grief after the death of her spouse and the year and a half following his diagnosis, illness, and passing. This book powerfully demonstrates that writing can be a companion in bereavement. It uses and explains the latest research on coming to terms with spousal loss without being prescriptive. Integrated with this contemporary research are stories, poetry, and reflections on writing as a therapeutic process. The author unflinchingly explores a number of themes that are underrepresented in existing resources: how one deals with anger associated with loss, what a healthy response might be to unfinished business with the deceased, continuing conversations with the beloved (even for agnostics and atheists), ongoing sexual desire, and secondary losses. As a rare book where an author successfully combines a personal story, heart-rending poetry, up-to-date research on grief, and an evocative exploration of taboo topics in the context of widowhood, Writing the Self in Bereavement is uniquely valuable for those grieving a spouse or other loved one, those supporting others in bereavement, and those interested in the healing power of poetry and life writing. Researchers on death and dying, grief counsellors, and autoethnographers will also benefit from reading this resonant resource on love and loss.




The Self in Health and Illness


Book Description

This book contains a foreword by Elliot G Mishler - professor of Social Psychology, Department of Psychiatry, Harvard Medical School. Patients' views of their identity change with illness, as do health professionals' views of them. This book discusses how and why this happens, and examines how more awareness of this phenomenon can lead to better care. Providing examples from diverse clinical settings, "The Self in Health and Illness" brings together writers from a range of backgrounds including health science, anthropology, sociology, psychology, nursing, medical ethics and healthcare. It considers the narrative self (or constructions of identity) and its place within healthcare and the medical humanities, and assists in clarifying the understanding of 'self' in the context of illness, health and medicine. An enlightening read for all doctors, especially those with an interest in medical humanities, this anthology is also invaluable for undergraduate and postgraduate students of medical humanities, researchers in health sciences and medical ethics. It will also be of great interest to medical anthropologists, psychologists, psychiatrists and other healthcare professionals. 'If you ask people questions about their lives they tell stories that express some version of "who" they are. Within the healthcare field, narrative researchers from various health professions and social science disciplines have been particularly interested in the potential impact of disability and illness on patient identities. What we find here is an array of quite systematic approaches to the complexities with which people narrate, perform, and possibly transform their identities through their stories. This is a serious undertaking and the editors and authors of these papers treat it with deep respect for our common struggle to make sense of our lives by achieving identities we can live with.' - Elliot G Mishler, in the Foreword.