My name is Christy Dearien.
I first learned the name of the disease that has affected my family for generations when my brother was diagnosed with Huntington’s disease about ten years ago. Learning that my kids and I were at-risk for the same disease turned my world upside down.
Huntington’s disease is neurodegenerative, fatal, and incurable; it is marked by physical and cognitive decline combined with significant changes in mood and behavior. Over time, a person with Huntington’s disease loses the ability to walk, talk, and participate in daily life. Every child of a gene-positive parent has a 50-50 chance of inheriting the disease. My HD gene status – and thus my future – had been decided at conception.
I never imagined my family would have a rare genetic disease, especially one like Huntington’s disease. Not knowing we were an HD family meant that my dad never got the help or understanding that could have made his life better. Not knowing meant that my siblings and I all had kids before we learned we could have passed on a genetic disease. Not knowing meant that we didn’t pay attention and savor the time before my brother started having symptoms.
To tell a more complete HD story, I’m combining my own experience with background research and other people’s stories.
When I tested negative five years ago, I couldn’t shake the idea that I wanted to tell the HD story in a new way.
I wanted to share a variety of stories to help people understand the many ways this very complex disease affects families and individuals.
When I reached out to the HD community, emails poured in from around the world within hours of my request. As I talked to people from a variety of backgrounds, I was struck by how quickly I was drawn into each of their narratives. Each conversation provided another piece of the puzzle, and my understanding of Huntington’s disease grew.
While researching Livable Lives, I expanded my understanding by exploring books, journal articles, websites, and presentations. The heart of the book, though, is the stories people shared with me along the way. Lived experience can teach us and help us feel things that we don’t always find in other sources.
The stories in Livable Lives are personal and often difficult, but they offer a glimpse of what it’s really like to have Huntington’s disease in the family. I think readers will love these stories as much as I do.
I’ve never been successful at keeping a journal or diary longer than a few entries, so I had to learn how to write about my own experiences. Instead of sitting down and writing at length, my story has come together a little at a time. Whenever a thought or idea comes to me – often while on a walk or getting ready for the day – I jot it down or email it to myself. As I reflect on my many conversations and my own experience, I find that I have a lot more to say than I thought I did when I started this journey.
