Welcome to Livable Lives!
Livable Lives launched in October! After three years of learning as much as I could about Huntington's disease, having conversations with the HD community, writing, and editing, I’m thrilled to see the stories people shared with me out in the world. As members of a rare disease community, we have so much to share and learn from each other.
One thing that stood out in my conversations was that the impact on families is extensive. I already knew this, of course, but my understanding of that impact grew as I heard how the disease affects others. We all have the shared experience of Huntington’s disease, but our experiences differ from person to person, from family to family, and across countries. There were times when another person’s experience validated my own, but there were also times when another’s experience opened my eyes. I learned care tips, saw the disease from a variety of perspectives, and realized just how tenacious people can be when faced with this complicated family disease. It was always evident that this is a very caring and generous community.
Above all, I learned that belonging to an HD family compels people to think about what’s important in their own lives and find ways to cope. This might mean making the most of the time before symptom onset – what one storyteller calls her “livable life.” It might mean making intentional decisions about the future, making memories with loved ones, or focusing on self-care and mental health. Or it might mean doing whatever it takes to provide a high quality of life for loved ones with Huntington’s disease, spending time with them, or advocating on their behalf to be sure they receive the best care.
My goals for Livable Lives are to provide a space where people can see that they’re not alone, to remind people how important it is to connect with and support each other, and to build understanding around this community. I hope this book will serve as a starting point for conversations with family members, friends, doctors, therapists, teachers, social workers, and others. It is imperative that the people around us understand the complicated nature of this disease.
When I set out to write this book, I knew I wanted to bring together a variety of stories and experiences. I knew this would be important to help people understand how much this disease impacts families and individuals. What I didn't know was that I was going to meet so many inspiring people along the way – people who are determined to make a difference for themselves, for their families, and for the greater HD community. I want to thank everyone who helped make Livable Lives possible, including storytellers, reviewers, HD organizations, and family and friends. I am eternally grateful for your time and support!
Livable Lives is available on Amazon as an eBook and paperback.
50% of net proceeds will be donated to HDYO!
Livable Lives is also available through IngramSpark,
which means your local bookstore may be able to order it for you.