Just Jen: Thriving Through Multiple Sclerosis

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Author : Jen Powley
Genre : Biography & Autobiography

Summary : Jen Powley was diagnosed with multiple sclerosis at fifteen. By thirty-five, she had lost the use of her arms and legs. Just Jen is a powerful memoir that tells the story of Powley’s life at the time of her diagnosis, and the infinite, irrevocable ways it has changed since. Powley’s writing pulls no punches. She is lively, bold and unapologetic, answering questions people are often afraid to ask about living with a progressive disease. And yet, these snapshots from Powley’s life are not tinged with anger or despair. Just Jen is a powerful, uplifting and unforgettable work by an author who has laid her life — and her body — bare in order to survive. Just Jen: Thriving Through Multiple Sclerosis - Book Trailer 1 from Fernwood Publishing on Vimeo.

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Author : Jen Powley
Genre : Biography & Autobiography

Summary : In some Canadian provinces, people with severe physical disabilities are simply warehoused in nursing homes, where many people, especially in the age of homecare, are in the final stages of their lives. It is difficult for a young person to live in a home geared for death; their physical assistance needs are met, but their social, psychological and emotional needs are not. Jen Powley argues that everyone deserves to live with the dignity of risk. In Making a Home, Powley tells the story of how she got young disabled people like herself out of nursing homes by developing a shared attendant services system for adults with severe physical disabilities. This book makes a case for living in the community and against dehumanizing institutionalization.

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Author : Ilana Jacqueline
Genre : Health & Fitness

Summary : “An important antidote to the dogmatic ‘kale and vitamins’ tone of most ‘self-help’ literature.” —Alexa Tsoulis-Reay, senior writer, New York magazine Popular blogger Ilana Jacqueline offers smart and savvy advice, humor, and practical tips for living with an invisible chronic illness. Do you live with a chronic, debilitating, yet invisible condition? You may feel isolated, out of step, judged, lonely, or misunderstood—and that’s on top of dealing with the symptoms of your actual illness. Take heart. You are not alone, although sometimes it can feel that way. Written by a blogger who suffers from an invisible chronic illness, Surviving and Thriving with an Invisible Chronic Illness offers peer-to-peer support to help you stay sane, be your own advocate, and get back to living your life. This compelling guide is written for anyone suffering with an illness no one can see—such as postural orthostatic tachycardia syndrome (POTS), chronic fatigue syndrome (CFS), fibromyalgia, multiple chemical sensitivity (MCS), Lyme disease, lupus, dysautonomia, or even multiple sclerosis (MP). This book will tell you everything you need to know about living with a complicated, invisible condition—from how to balance sex, dating, and relationships to handling work and school with unavoidable absences. You’ll also learn to navigate judg-y or skeptical relatives and strangers and—most importantly—manage your medical care. Suffering from a chronic illness doesn’t mean you can’t live an active, engaged life. This book will show you how.

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Author : Becky Kennedy
Genre : Self-Help

Summary : My MSAdventures: Multiple Sclerosis: It’s Not Just a Disease—It’s an Adventure portrays the journey of a persistent and optimistic woman who has endured decades of complicated navigation through the sometimes turbulent currents of life with the diagnosis of multiple sclerosis. Writing in a tone that captures the identical light-hearted and hopeful approach that has kept her afloat for decades, Becky Kennedy shares how she lives with a condition that could easily capsize her life. Proceeding topically rather than chronologically, the author’s narrative in My MSAdventures tells how the adventures began, reviews rehab and other “fun vacation spots,” and points out how adventures await one everywhere. As an added feature, an appendix provides a collection of useful Web sites. If you are one of the many who live with the diagnosis of MS and wonder how—despite your condition—you not only will endure, but also thrive, My MSAdventures promises to help you to see beyond the currently tough times to the prospects ahead of you. If, on the other hand, you are someone who cares for another who lives with MS, then My MSAdventures has an uplifting message of hope for you too. “If you have been diagnosed with multiple sclerosis (MS), this book is a must. Becky shares her own personal trials and tribulations with the disease. I recommend this book not only to every patient of mine with MS, but also to their family and friends.”

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Author : Shanna Katz Kattari
Genre : Social Science

Summary : Offering a current, comprehensive, and intersectional guide for students, practitioners, and researchers, this book synthesizes existing scholarship on culturally responsive practices that assist in exploring, understanding, and affirming the sexuality(ies) of disabled, chronically ill, neurodivergent, and Mad individuals. Drawing on an intersectional framework, it integrates insights drawn from an interdisciplinary body of scholarship including psychology, social work, sociology, history, political science, women and gender studies, cultural studies, and education along with perspectives from the practitioners who are actively defining the next generation of best practices. By highlighting the incredible resilience and resistance of disabled individuals’ and communities’ sexuality and sexual well-being, this book challenges narratives that rely primarily on a one-dimensional view derived from the medical model and the view of disability as something to be “fixed” – or at least tolerated – rather than celebrated. In a world that pathologizes and devalues the sexual existence of disabled individuals, it illustrates how to create thriving communities and relationships, and how they can organize to find their voice, providing a counter-narrative of empowerment that fosters hopefulness, power, and health. It will be of interest to all scholars, students, and professionals across a variety of professions, including social work, psychology, counseling, policy, healthcare, education, community organizing, and multiple social service settings.

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Author : Lisa Genova
Genre : Fiction

Summary : “Unsparing in her depiction of the disease’s harrowing effects, neuroscientist Genova also celebrates humanity.” —People “Sometimes it’s easier to tell truth in fiction…And she tells it with heart and hope.” —NPR “Her juxtaposition of scientific detail with compassionate, heartfelt storytelling is unparalleled.” —Bookreporter “Every Note Played will grip and gut you.” —The Boston Globe From neuroscientist and New York Times bestselling author of Still Alice comes a powerful exploration of regret, forgiveness, freedom, and what it means to be alive. An accomplished concert pianist, Richard received standing ovations from audiences all over the world in awe of his rare combination of emotional resonance and flawless technique. Every finger of his hands was a finely calibrated instrument, dancing across the keys and striking each note with exacting precision. That was eight months ago. Richard now has ALS, and his entire right arm is paralyzed. His fingers are impotent, still, devoid of possibility. The loss of his hand feels like a death, a loss of true love, a divorce—his divorce. He knows his left arm will go next. Three years ago, Karina removed their framed wedding picture from the living room wall and hung a mirror there instead. But she still hasn’t moved on. Karina is paralyzed by excuses and fear, stuck in an unfulfilling life as a piano teacher, afraid to pursue the path she abandoned as a young woman, blaming Richard and their failed marriage for all of it. When Richard becomes increasingly paralyzed and is no longer able to live on his own, Karina becomes his reluctant caretaker. As Richard’s muscles, voice, and breath fade, both he and Karina try to reconcile their past before it’s too late. Poignant and powerful, Every Note Played is a masterful exploration of redemption and what it means to find peace inside of forgiveness.

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Author : Rachel Noorda
Genre : Language Arts & Disciplines

Summary : Entrepreneurship underpins many roles within the publishing industry, from freelancing to bookselling. Entrepreneurs are shaped by the contexts in which their entrepreneurship is situated (social, political, economic, and national). Additionally, entrepreneurship is integral to occupational identity for book publishing entrepreneurs. This Element examines entrepreneurship through the lens of identity and narrative based on interview data with book publishing entrepreneurs in the US Book publishing entrepreneurship narratives of independence, culture over commerce, accidental profession, place, risk, (in)stability, busyness, and freedom are examined in this Element.