In case you haven’t heard, Help4HD will soon publish a book called Life Interrupted. It’s an anthology of testimonials from twelve people whose lives have indeed been interrupted by Huntington’s disease. I’ve read two of the chapters, and I wrote one of them. Based on the ones I read, I am definitely ordering a copy from Amazon when the book comes out (tentatively) in August. Here’s some information and background about the book. In excerpts from the book’s Foreward, Sharon Thomason explains about the inception and process of making the book.
“When Katie Jackson and Melissa Biliardi approached me with the idea for this book, I was so excited about the opportunity to share the truth of Huntington’s disease with the world. After all, “Help4HD envisions a world where everyone knows 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. This can only be accomplished through positive education and advocacy efforts.” What better opportunity to educate the world than by sharing the stories of people who have been affected by this horrific disease?”
Take a peek at the Table of Contents (Some names are pseudonyms).
- Lisa Davenport – Through the Eyes of a Love Child
- Sarah Foster – Written Descent
- Ben Lamoreau – Just Listen
- Jeanne Grundborg – Three Stolen Futures
- Frances Saldaña – Marrying Into a Family With Huntington’s Disease
- Vicki Owen – I’m Not Sick … I Just Have HD
- Roberta Brink – Accidental Discovery
- Pat Wolf – Woody, My Wife-in-Law, and Me
- Margaret D’aiuto – Turning Tears Into Hope
- Brenda Vega – Love In Action
- Sharon Thomason – Into the Storm
- Katie Jackson – When Strength and Resilience Are Your Only Option
Afterword: Jimmy Pollard – Appreciations and Lessons from a Fellow Traveller
About the process and the final product, Sharon says:
“I just didn’t know how hard it would be. Not “hard” as in time and effort, but emotionally hard. After editing each chapter, I felt completely drained, as if I had lived the story with the writer. The stories within these pages are raw and true. They are poignant and powerful … warriors, plain and simple. They fight the disease, they fight the stigma, they fight the medical establishment, they fight Social Security and other government programs, and they fight to advocate for themselves, for their loved ones, and for the HD community. They are fierce, and they are strong, though they will be the first to tell you that they are not really strong, that they are just doing what they have to do. One writer told me that writing her chapter was “healing” for her after years of grieving the tragic loss of her two children. Another shared with me that she broke down sobbing in the midst of writing her chapter and had to put it aside for a while before she could come back to it.”
Writing the chapter was one of the most challenging things I’ve faced, because I had to stare at my own HD without blinking and describe what I saw. For weeks. I was exhausted after I finished.
I plan to talk with some of the other authors about their experiences while writing their chapters. The next time I blog about Life Interrupted, I will be sure to include some of that discussion.