Edited by Sharon McClellan Thomason
Published by Help4HD International
Published: July 2015
Life Interrupted is a collection of 12 autobiographical stories written by individuals who have or are impacted by Huntington’s disease (HD). The book was published by Help4HD International, a non-profit dedicated to raising awareness and providing support for those affected by HD, particularly in underserved areas. Often described as a combination of Alzheimer’s, schizophrenia, and Parkinson’s, HD has been called the “worst disease known to mankind”.
As an autosomal dominant genetic disorder, HD wreaks havoc within the families that it exists. Several of the authors are not only coping with their own or a partner’s diagnosis, but also have parents, children, aunts, uncles, and cousins fighting the same battle.
Life Interrupted was published in order to raise awareness about Huntington’s disease; and does so by allowing the reader to briefly witness the journeys of twelve incredibly strong individuals as they face the monster of HD, bringing the reader intimately into the lives of the authors and their families. Life Interrupted serves as a valuable awareness tool in helping the public understand the ways and extent to which HD turns lives upside-down.
The book opens with a foreword by Sharon McClellan Thomason, the managing editor of Help4HD International’s online newspaper The Huntington’s Post. Her first husband died of complications from HD and her son is currently symptomatic, a story which she details in Chapter 11, titled “Into the Storm.” A dedicated activist, in her foreword Sharon expresses the difficulty she encountered not only in telling her own story but also in reviewing the stories of others for the editing process. She also communicates hope that the book will help achieve Help4HD’s mission of creating a world “where everyone know what Huntington’s disease and Juvenile Huntington’s disease is; a world in which compassion is a normal response to the devastation that this horrific disease bestows on everyone”.
The book closes with an afterword by Jimmy Pollard, an HD activist and expert in specialized care for those with HD. He also works with the Cure Huntington’s Disease Initiative (CHDI) Foundation and travels worldwide to raise awareness and teach about how to care for those with HD.
Every story presented in Life Interrupted is as sincere and candid as the last, hiding no details of the horrors of this disease. Major issues within the HD community, such as genetic testing, assisted living, public benefits, family dynamics, and end-of-life care, are raised again and again by the families living through it all. The honesty of it all sends an undeniable message: this book matters, these stories matter, pay attention world.
The authors in Life Interrupted are presented as follows. Please note that some names have been changed for the protection of those who have or are at-risk for HD and may therefore suffer from discrimination in the workplace, care facilities, and in public.
Foreword: “Life Interrupted” by Sharon McClellan Thomason
Chapter One: “Through the Eyes of a Love Child” by Lisa Davenport
Chapter Two: “Written Descent” by Sarah Foster
Chapter Three: “Just Listen” by Ben Lamoreau
Chapter Four: “Three Stolen Futures” by Jeannie Grundborg
Chapter Five: “Marrying into a Family with Huntington’s Disease: A Fight to End a Generational Disease” By Frances Sandaña
Chapter Six: “I’m Not Sick… I Just Have HD” by Vicki Owen
Chapter Seven: “Accidental Discovery” by Roberta Brink
Chapter Eight: “Woody, My Wife-in-Law, and Me” by Pat Wolf
Chapter Nine: “Turning Tears into Hope” by Margaret D’aiuto
Chapter Ten: “Love in Action” by Brenda A. Vega Fonseca (Translated from Spanish by Daniel Medina)
Chapter Eleven: “Into the Storm” by Sharon McClellan Thomason
Chapter Twelve: “When Strength and Resilience Are Your Only Option” by Katie Jackson
Afterword: “Appreciations and Lessons from a Fellow Traveller” by Jimmy Pollard