Beyond Words


Book Description

“Kathlyn Conway opens primordial questions about the shattering events of illness through close readings of selected illness narratives, proposing that only writing of a daring kind can utter the knowledge of the self-telling body. Wielding her ferocious intellect and braving exposure to self and other, Conway makes original discoveries about writing and illness and, more stunningly, about writing and life. Not a book about illness, this is a book about writing and being. It is taut, brave, unequalled in our scholarship, and true. Conway joins our most powerful investigators of the human predicament of mortality, helping us to see, helping us to live.”—Rita Charon, Columbia University, Program in Narrative Medicine Published accounts of illness and disability often emphasize hope and positive thinking: the woman who still looked beautiful after losing her hair, the man who ran five miles a day during chemotherapy. This acclaimed examination of the genre of the illness narrative questions that upbeat approach. Author Kathlyn Conway, a three-time cancer survivor and herself the author of an illness memoir, believes that the triumphalist approach to writing about illness fails to do justice to the shattering experience of disease. By wrestling with the challenge of writing about the reality of serious illness and injury, she argues, writers can offer a truer picture of the complex relationship between body and mind.




Handbook on the Sociology of Health and Medicine


Book Description

This timely Handbook provides an essential guide to the major topics, perspectives, and scholars in the sociology of health and medicine. Contributors prove the immense value of a sociological understanding of central health and medical concerns, including public health, the COVID-19 pandemic, and new medical technologies.




The Poetics and Politics of Alzheimer’s Disease Life-Writing


Book Description

This book is open access under a CC BY 4.0 license. This is the first book-length exploration of the thoughts and experiences expressed by dementia patients in published narratives over the last thirty years. It contrasts third-person caregiver and first-person patient accounts from different languages and a range of media, focusing on the poetical and political questions these narratives raise: what images do narrators appropriate; what narrative plot do they adapt; and how do they draw on established strategies of life-writing. It also analyses how these accounts engage with the culturally dominant Alzheimer’s narrative that centres on dependence and vulnerability, and addresses how they relate to discourses of gender and aging. Linking literary scholarship to the medico-scientific understanding of dementia as a neurodegenerative condition, this book argues that, first, patients’ articulations must be made central to dementia discourse; and second, committed alleviation of caregiver burden through social support systems and altered healthcare policies requires significantly altered views about aging, dementia, and Alzheimer’s patients.




Symbolism 2018


Book Description

This special issue of Symbolism: An International Annual of Critical Aesthetics explores the various functions of metaphor in life writing. Looking at a range of autobiographical subgenres (pathography, disability narratives, memoirs of migration, autofiction) and different kinds of metaphors, the contributions seek to ‘map’ the possibilities of metaphor for narratively framing an individual life and for constructing notions of selfhood.




The Deep Places


Book Description

NEW YORK TIMES EDITORS’ CHOICE • In this vulnerable, insightful memoir, the New York Times columnist tells the story of his five-year struggle with a disease that officially doesn’t exist, exploring the limits of modern medicine, the stories that we unexpectedly fall into, and the secrets that only suffering reveals. “A powerful memoir about our fragile hopes in the face of chronic illness.”—Kate Bowler, bestselling author of Everything Happens for a Reason In the summer of 2015, Ross Douthat was moving his family, with two young daughters and a pregnant wife, from Washington, D.C., to a sprawling farmhouse in a picturesque Connecticut town when he acquired a mysterious and devastating sickness. It left him sleepless, crippled, wracked with pain--a shell of himself. After months of seeing doctors and descending deeper into a physical inferno, he discovered that he had a disease which according to CDC definitions does not actually exist: the chronic form of Lyme disease, a hotly contested condition that devastates the lives of tens of thousands of people but has no official recognition--and no medically approved cure. From a rural dream house that now felt like a prison, Douthat's search for help takes him off the map of official medicine, into territory where cranks and conspiracies abound and patients are forced to take control of their own treatment and experiment on themselves. Slowly, against his instincts and assumptions, he realizes that many of the cranks and weirdos are right, that many supposed "hypochondriacs" are victims of an indifferent medical establishment, and that all kinds of unexpected experiences and revelations lurk beneath the surface of normal existence, in the places underneath. The Deep Places is a story about what happens when you are terribly sick and realize that even the doctors who are willing to treat you can only do so much. Along the way, Douthat describes his struggle back toward health with wit and candor, portraying sickness as the most terrible of gifts. It teaches you to appreciate the grace of ordinary life by taking that life away from you. It reveals the deep strangeness of the world, the possibility that the reasonable people might be wrong, and the necessity of figuring out things for yourself. And it proves, day by dreadful day, that you are stronger than you ever imagined, and that even in the depths there is always hope.




Shame and Modern Writing


Book Description

Shame and Modern Writing seeks to uncover the presence of shame in and across a vast array of modern writing modalities. This interdisciplinary volume includes essays from distinguished and emergent scholars in the Humanities and Social Sciences, and shorter practice-based reflections from poets and clinical writers. It serves as a timely reflection of shame as presented in modern writing, giving added attention to engagements on race, gender, and the question of new media representation.




Eros and Illness


Book Description

When we or our loved ones fall ill, our world is thrown into disarray, our routines are interrupted, our beliefs shaken. David Morris offers an unconventional, deeply human exploration of what it means to live with, and live through, disease. He shows how desire—emotions, dreams, stories, romance, even eroticism—plays a crucial part in illness.




The Illness Narratives


Book Description

From one of America's most celebrated psychiatrists, the book that has taught generations of healers why healing the sick is about more than just diagnosing their illness. Modern medicine treats sick patients like broken machines -- figure out what is physically wrong, fix it, and send the patient on their way. But humans are not machines. When we are ill, we experience our illness: we become scared, distressed, tired, weary. Our illnesses are not just biological conditions, but human ones. It was Arthur Kleinman, a Harvard psychiatrist and anthropologist, who saw this truth when most of his fellow doctors did not. Based on decades of clinical experience studying and treating chronic illness, The Illness Narratives makes a case for interpreting the illness experience of patients as a core feature of doctoring. Before Being Mortal, there was The Illness Narratives. It remains today a prescient and passionate case for bridging the gap between patient and practitioner.




Dementia and Literature


Book Description

Dementia is an urgent global concern, often termed a widespread ‘problem’, ‘tragedy’ or ‘burden’ and a subject best addressed by health and social policy and practice. However, creative writers can offer powerful and imaginative insights into the experience of dementia across cultures and over time. This cross-disciplinary volume explores how engaging with dementia through its myriad literary representations can help to deepen and humanise attitudes to people living with the condition. Offering and interrogating a wide array of perspectives about how dementia might be ‘imagined’, this book allows us to see how different ways of being can inflect one another. By drawing on the ‘lived’ experience of the individual unique person and their loved ones, literature can contribute to a deeper and more compassionate and more liberating attitude to a phenomenon that is both natural and unnatural. Novels, plays and stories reveal a rich panoply of responses ranging from the tragic to the comic, allowing us to understand that people with dementia often offer us models of humour, courage and resilience, and carers can also embody a range of responses from rigidity to compassion. Dementia and Literature problematises the subject of dementia, encouraging us all to question our own hegemonies critically and creatively. Drawing on literary studies, cultural studies, education, clinical psychology, psychiatry, nursing and gerontology, this book is a fascinating contribution to the emerging area of the medical and health humanities. The book will be of interest to those living with dementia and their caregivers as well as to the academic community and policy makers.




Global Perspectives on Probing Narratives in Healthcare


Book Description

There is often a communication disconnect between medical caregivers, including doctors, nurses, therapists, and other assistive medical personnel, and the patient. While medical staff usually understand a patient’s symptoms, causes, and treatments, communicating this understanding to a patient using industry terminologies can lead to confusion and misunderstanding, and similarly, patients may lack the vocabulary to effectively communicate their experiences back to their caregivers. A new approach to communication must be bridged between these groups by individuals who have experience on both sides of the conversation. Previous studies of doctors who end up in the role of the patient reveal how these individuals have a dual perspective on illness, combining their medical knowledge with their own personal medical experiences. Narratives, including autobiographical accounts and fictional stories, can help bridge the gap between experiential and academic knowledge of illness by expanding one’s limited perspective and accessing others’ points of view. Autobiographical and fictional narratives can both play a role in developing a more comprehensive understanding of illness beyond simply treating the disease. It is necessary to further examine the ethical and methodological underpinnings of narrative-based interventions in the education of healthcare professionals, practitioners, and patients. Global Perspectives on Probing Narratives in Healthcare offers a multidisciplinary examination of theoretical and methodological uses of narratives in healthcare by bringing together medical aspects of healthcare and the study of arts and humanities. This illustrates specific applications of narratives in healthcare settings, including improvement of clinical skills, performance of the caring role, and self-efficacy for building a true partnership in the patient’s health journey through varied approaches, up-to-date tools, and resources that can be transferred and adapted to specific educational and healthcare contexts. This diverse collection of expert knowledge and experience is led by editors with over 20 years of teaching experience: Dr. Teresa Casal of the University of Lisbon, Portugal and Dr. Maria de Jesus Cabral of the University of Minho, Portugal. Expertise featured in this book includes contributions from some of the most prestigious academic institutions, including Columbia University in the United States, King’s College in the United Kingdom, University of Padua in Italy, and more. It is an essential resource for healthcare and social science researchers, academics, advanced healthcare students, health training and education departments, healthcare practitioners and patients’ associations, and policymakers in healthcare who are looking to broaden their scope of understanding of the patient experience.