Voices of the Chronically Ill


Book Description

This book describes what it is like to embody chaos and liminality in living with a physical chronic illness and how these experiences are related to the loss and remaking of one’s sense of self. It also encourages readers to listen closely to the figurative language people use in trying to articulate the unspeakable. Focusing upon a wide array of narrative fragments gathered from first-person literary work and research, the author portrays how a conglomerate of sensations, feelings, and thoughts are embodied in the illness experience. The voices present in this text speak of vulnerability, suffering, and brokenness, yet also, endurance and fortitude. The ethics of philosopher Emmanuel Levinas provide the grounds for offering care lovingly. This book makes a significant contribution to helping students, practitioners and carers understand the chaos that is inherent, yet so often silenced, in the illness experience. This text could also be of interest to laypeople who are curious about how subjective illness is experienced, and to those who are ill who may be seeking affirmation for what they are experiencing.




Lycanthropy and Other Chronic Illnesses


Book Description

“Emotional, thoughtful, and a true testament to the power of friendship”—Locus Magazine Teen Wolf meets Emergency Contact in this sharply observed, hilarious, and heartwarming debut young adult novel about friendship, chronic illness, and . . . werewolves. Priya worked hard to pursue her premed dreams at Stanford, but the fallout from undiagnosed Lyme disease sends her back to her childhood home in New Jersey during her sophomore year—and leaves her wondering if she’ll ever be able to return to the way things were. Thankfully she has her online pen pal, Brigid, and the rest of the members of “oof ouch my bones,” a virtual support group that meets on Discord to crack jokes and vent about their own chronic illnesses. When Brigid suddenly goes offline, Priya does something out of character: she steals the family car and drives to Pennsylvania to check on Brigid. Priya isn’t sure what to expect, but it isn’t the horrifying creature that's shut in the basement. With Brigid nowhere to be found, Priya begins to puzzle together an impossible but obvious truth: the creature might be a werewolf—and the werewolf might be Brigid. As Brigid's unique condition worsens, their friendship will be deepened and challenged in unexpected ways, forcing them to reckon with their own ideas of what it means to be normal.




Chronically Fabulous: Finding Wholeness and Hope Living with Chronic Illness


Book Description

When Marisa Zeppieri was 22-years-old she found herself face-to-face with a raven-haired elderly woman who had emerged from a crowd and gently taken her hands: God will use these hands to change people's lives.Years later Marisa's once-spirited demeanor was shrouded in anger and bitterness. Triggered first by a near-fatal car accident that sent her 100-lb body flying from a crosswalk and later by a painful Lupus diagnosis, she became stuck in a season of brokenness.But in the seasons that followed, an insatiable emotional, spiritual, and physical hunger took over: She learned how to nourish her broken body with the help of food, herbs, and a gastronomically-gifted Italian grandmother, while also nourishing her broken heart and crushed spirit through a deeper relationship with God.With Chronically Fabulous, Marisa fulfills the old woman's prophecy by offering pure nourishment to those of us living with chronic illness, helping us create wholeness and well-being through a love of food. Here, the founder of LupusChick, a nonprofit supporting those with autoimmune diseases, offers guiding principles, personal stories, and recipes that support whole-life thriving. With the depth, smarts, and spiritual advice beloved by her dedicated followers, Marisa shows us how faith, passion, and persistence can radically change our lives.




What Doesn't Kill You


Book Description

"Should be read by anyone with a body. . . . Relentlessly researched and undeniably smart." —The New York Times Named one of BuzzFeed's "Best Books of 2021" What Doesn't Kill You is the riveting account of a young journalist’s awakening to chronic illness, weaving together personal story and reporting to shed light on living with an ailment forever. Tessa Miller was an ambitious twentysomething writer in New York City when, on a random fall day, her stomach began to seize up. At first, she toughed it out through searing pain, taking sick days from work, unable to leave the bathroom or her bed. But when it became undeniable that something was seriously wrong, Miller gave in to family pressure and went to the hospital—beginning a years-long nightmare of procedures, misdiagnoses, and life-threatening infections. Once she was finally correctly diagnosed with Crohn’s disease, Miller faced another battle: accepting that she will never get better. Today, an astonishing three in five adults in the United States suffer from a chronic disease—a percentage expected to rise post-Covid. Whether the illness is arthritis, asthma, Crohn's, diabetes, endometriosis, multiple sclerosis, ulcerative colitis, or any other incurable illness, and whether the sufferer is a colleague, a loved one, or you, these diseases have an impact on just about every one of us. Yet there remains an air of shame and isolation about the topic of chronic sickness. Millions must endure these disorders not only physically but also emotionally, balancing the stress of relationships and work amid the ever-present threat of health complications. Miller segues seamlessly from her dramatic personal experiences into a frank look at the cultural realities (medical, occupational, social) inherent in receiving a lifetime diagnosis. She offers hard-earned wisdom, solidarity, and an ultimately surprising promise of joy for those trying to make sense of it all.




Hospice Voices


Book Description

As a part-time hospice volunteer, Eric Lindner provides “companion care” to dying strangers. They’re chatterboxes and recluses, religious and irreligious; battered by cancer, congestive heart failure, Alzheimer’s, old age. Some cling to life amazingly. Most pass as they expected. In telling his story, Lindner reveals the thoughts, fears, and lessons of those living the ends of their lives in the care of others, having exhausted their medical options or ceased treatment for their illnesses. In each chapter, Lindner not only reveals the lessons of lives explored in their final days, but zeroes in on how working for hospice can be incredibly fulfilling. As he’s not a doctor, nurse, or professional social worker, just a volunteer lending a hand, offering a respite for other care providers, his charges often reveal more, and in more detail, to him than they do to those with whom they spend the majority of their time. They impart what they feel are life lessons as they reflect on their own lives and the prospect of their last days. Lindner captures it all in his lively storytelling. Anyone who knows or loves someone working through end of life issues, living in hospice or other end of life facilities, or dealing with terminal or chronic illnesses, will find in these pages the wisdom of those who are working through their own end of life issues, tackling life’s big questions, and boiling them down into lessons for anyone as they age or face illness. And those who may feel compelled to volunteer to serve as companions will find motivation, inspiration, and encouragement. Rather than sink under the weight of depression, pity, or sorrow, Lindner celebrates the lives of those who choose to live even as they die.




How to Be Sick


Book Description

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.




The Lady's Handbook for Her Mysterious Illness


Book Description

The darkly funny memoir of Sarah Ramey’s years-long battle with a mysterious illness that doctors thought was all in her head—but wasn’t. In her harrowing, darkly funny, and unforgettable memoir, Sarah Ramey recounts the decade-long saga of how a seemingly minor illness in her senior year of college turned into a prolonged and elusive condition that destroyed her health but that doctors couldn't diagnose or treat. 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—autoimmune illnesses, fibromyalgia and chronic fatigue syndrome, chronic Lyme disease, chronic pain, and many more. Ramey's pursuit of a diagnosis and cure for her own mysterious illness becomes a page-turning medical mystery that 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 connections to the state of our microbiomes. Her book will open eyes, change lives, and, ultimately, change medicine. The Lady's Handbook for Her Mysterious Illness is a revelation and an inspiration for millions of women whose legitimate health complaints are ignored.




Life Disrupted


Book Description

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.




Stricken


Book Description

Develop a better understanding of what CFS/CFIDS sufferers are going through!In the 1980s, a strange emerging epidemic baffled doctors in Incline Village, Nevada. Dismissed by the media as “The Yuppie Flu,” Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) turned out to be neither a faddish disease of the wealthy nor a passing trend, but rather a growing worldwide epidemic of devastating proportions.In the voices of a South African journalist, a former marathon runner, a teenage girl, a public health activist living on the edge of race and gender, a cancer patient neglected by doctors because of disdain for her chronic illness, and a theologian relearning the art of spiritual empathy, the people who share their stories in Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome defy cultural stereotypes and explore the complex social and political dynamics of this hidden epidemic. Through their distinct points of view, we feel the grief and hope of those stricken with CFIDS and learn of the complex nature of this misunderstood disorder. These are compelling stories about a quiet and baffling epidemic. The first American anthology to contain stories from a diverse range of people with CFIDS, Stricken offers an intimate look at the political and social issues surrounding CFIDS, as told by those who are living through this ordeal. Stricken addresses several issues, such as: why some doctors still do not believe CFIDS is real how the disease is mocked in the media myths about this illness the personal fight for medical or public recognition the skepticism and hope that is felt by the ever-growing number of CFIDS sufferers Stricken confronts fascinating CFIDS issues such as the Kevorkian suicides, accusations of Munchausen Syndrome By Proxy, Gulf War Syndrome, the role of storytelling in a memory-impaired patient movement, and the feasibility of mass activism in a disabled population. With contributions from Pulitzer-prize nominated writer Susan Griffin, renowned health writer and radio host Gary Null, well-known feminist activist Joan Nestle, and award-winning poet and essayist Floyd Skloot, Stricken is an eloquent testament to the heroism, defiance, and diversity of the CFIDS community.




In the Kingdom of the Sick


Book Description

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.