Living in a Dying Body: Superheroes, ALS and Me

While Anthony Mann was living in his dying body, he spent a lot of time in cyberspace. There he was flying free of his increasingly less-useful limbs and from the other limitations ALS imposed on him, participating in the world available to him there, working on computer-related projects and issues, enjoying his freedom and exercising his strengths. He continued his lifelong habit of thinking about his life and actions, analyzing and ordering his experiences, remembering and reliving. When he was ready to seize the opportunity to write a memoir of what he knew would be a not-nearly-long-enough life, he did so with pride and dedication, determined to make sure that he would finish getting his story told before his time ran out. And he did get his story told, a story that includes superheroes both fictional and real: his greatest hero, Randy Couture of mixed martial arts (MMA) fame, plays a starring role as he goes from inspiring Anthony from afar to giving him an up-close and personal experience of the world of MMA that was one of the highlights of Anthony's life. Anthony's story is about the ordinary events of growing up as well as events that, in retrospect, can seem extraordinary: going to school, making friends, finding a place in the day-to-day world, falling in love, celebrating holidays, traveling, working, playing. Resting on the structure of the chronology of his life and enlivened by the drama found in events both great and small, Anthony's story lays out the pieces of the puzzle formed when life presents a stark pathway with no easy exit. Gifted, intelligent, loving parents and a strong network of loving family, friends, and colleagues provide light near the darkness of a terrible diagnosis; the harsh reality of diminishing mobility stands next to the pleasures of the trip of a lifetime and vast technological resources that bring entertainment and the world into a home modified to accommodate Anthony's changed circumstances. Hope and despair, love and anxiety, peace and pain. The story of how this young man lived in his dying body and of what happened along the way and how he fared on his journey offers a look into a kaleidoscope of fate, family, and personal history, the theme of the hero played out on a twenty-first-century stage.