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A Life Impossible: Living with ALS: Finding Peace and Wisdom Within a Fragile Existence
Par Steve Gleason, Jeff Duncan. 2024
From NFL player Steve Gleason, a powerful, inspiring memoir of love, heartbreak, resilience, family, and remarkable triumph in the face…
of ALSIn 2011, three years after leaving the NFL, Steve Gleason was diagnosed with ALS, a terminal disease that takes away the ability to move, talk, and breathe. Doctors gave him three years to live. He was thirty-three years old. As Steve says, he is now ten years past his expiration date.His memoir is the chronicle of a remarkable life, one filled with optimism and joy, despite the trauma and pain and despair he has experienced. Writing using eye-tracking technology, Gleason covers his pre-ALS life through the highs and lows of his NFL career with the New Orleans Saints, where he made one of the most memorable plays in Saints history, leading to a victory in the first post-Katrina home game, uplifting the city, making him a hero, and reflected in a nine-foot bronze statue outside the Superdome. Then came his heartbreaking diagnosis. Gleason lost all muscle function, he now uses Stephen Hawking-like technology to communicate, and breathes with the help of a ventilator. This book captures Gleason and his wife Michel&’s unmatched resilience as they reinvent their lives, refuse to succumb to despair, and face his disease realistically and existentially.This unsparing portrait argues that a person's true strength does not reside solely in one&’s body but also in the ability to face unfathomable adversity and still be able to love and treasure life.Disability Intimacy: Essays on Love, Care, and Desire
Par Edited by Alice Wong. 2024
The much-anticipated follow up to the groundbreaking anthology Disability Visibility: another revolutionary collection of first-person writing on the joys and…
challenges of the modern disability experience, and intimacy in all its myriad forms.What is intimacy? More than sex, more than romantic love, the pieces in this stunning and illuminating new anthology offer broader and more inclusive definitions of what it can mean to be intimate with another person. Explorations of caregiving, community, access, and friendship offer us alternative ways of thinking about the connections we form with others—a vital reimagining in an era when forced physical distance is at times a necessary norm. But don't worry: there's still sex to consider—and the numerous ways sexual liberation intersects with disability justice. Plunge between these pages and you'll also find disabled sexual discovery, disabled love stories, and disabled joy. These twenty-five stunning original pieces—plus other modern classics on the subject, all carefully curated by acclaimed activist Alice Wong—include essays, photo essays, poetry, drama, and erotica: a full spectrum of the dreams, fantasies, and deeply personal realities of a wide range of beautiful bodies and minds. Disability Intimacy will free your thinking, invigorate your spirit, and delight your desires.The Shaking Woman, or A History of My Nerves
Par Siri Hustvedt. 2009
In this unique neurological memoir Siri Hustvedt attempts to solve her own mysterious conditionWhile speaking at a memorial event for…
her father in 2006, Siri Hustvedt suffered a violent seizure from the neck down. Despite her flapping arms and shaking legs, she continued to speak clearly and was able to finish her speech. It was as if she had suddenly become two people: a calm orator and a shuddering wreck. Then the seizures happened again and again. The Shaking Woman or A History of My Nerves tracks Hustvedt's search for a diagnosis, one that takes her inside the thought processes of several scientific disciplines, each one of which offers a distinct perspective on her paroxysms but no ready solution. In the process, she finds herself entangled in fundamental questions: What is the relationship between brain and mind? How do we remember? What is the self? During her investigations, Hustvedt joins a discussion group in which neurologists, psychiatrists, psychoanalysts, and brain scientists trade ideas to develop a new field: neuropsychoanalysis. She volunteers as a writing teacher for psychiatric in-patients at the Payne Whitney clinic in New York City and unearths precedents in medical history that illuminate the origins of and shifts in our theories about the mind-body problem. In The Shaking Woman, Hustvedt synthesizes her experience and research into a compelling mystery: Who is the shaking woman? In the end, the story she tells becomes, in the words of George Makari, author of Revolution in Mind, "a brilliant illumination for us all."Being Julia - A Personal Account of Living with Pathological Demand Avoidance
Par Ruth Fidler, Julia Daunt. 2021
Diagnosed with Pathological Demand Avoidance (PDA) at aged 12 and writing this memoir at age 37, Julia Daunt depicts the…
ins and out of PDA and its symptoms, while maintaining a positive outlook on what is possible to achieve. Co-written with professional specialist Ruth Fidler, it covers how PDA impacts Julia's life, including meltdowns, sensory issues and communication in relationships.Including examples of school reports and handwritten letters, a chapter written from Julia's partner's perspective and even an example of Julia's favourite recipe, this warm and personal look at living and thriving with PDA is informative and inspiring.