A coin flip.
In my early teens, I found out I had a 50/50 chance of inheriting the disease that was slowly robbing my father of many of his physical skills.
Many people “at-risk” for Huntington’s Disease choose not to know — there is no cure, and there is little treatment for the disease. From the time I understood my chances of inheriting HD, I knew I had to get tested. The decision to be tested is a very personal one, and one that is not to be treated lightly. Typically, “at-risk” children at the age of 18 aren’t tested. In the months up to and past my 18th birthday, I underwent counseling to make sure I wanted to be tested for the right reasons. For me, it was hard to see a future beyond knowing what my future may hold. My studies suffered, and an unsuccessful first semester of college told me what I already knew — I needed to be tested.
I got my results back on March 5, 2003. I did not have Huntington’s disease. I do not have the gene, and I cannot pass it on to future generations. In the near 15 years since I was tested, I have learned to embrace the future I didn’t always believe I would have. I have embraced my passions, and built relationships that make the time we have in the world so meaningful.
Even after his passing, my father is a part of my life every day. I know how much I meant to him, and I pray every day that he knows how much he has meant to me. On my wrist every day, I wear my father’s initials, and the lyrics to John Mayer’s Gravity.
Gravity has taken better men than me
Now, how can that be?
Just keep me where the light is…
Even as Huntington’s disease weakened my father’s body, it could never weaken his soul. Over time, as my father lost the ability to walk and speak, I know he always knew I was there, recounting events of my high school life or a recent Mets game. For years, we were in an adult/junior bowling league together after school, and he came to as many of my baseball and basketball games as he could. I will never forget growing up playing Wiffle ball and shooting hoops in the driveway. And my lifelong love of the Mets has as much to do with keeping memories of my father alive, as well as loving the game itself.
May is Huntington’s Disease Awareness Month, so #LetsTalkAboutHD, this month and every month. Huntington’s disease is a genetic disorder that the Huntington’s Disease Society of America says many describe as having “the symptoms of HD as having ALS, Parkinson’s and Alzheimer’s — simultaneously.” More than 30,000 Americans have Huntington’s disease, with over 200,000 people at risk of inheriting the disease.
I encourage you to learn more about Huntington’s disease from the Huntington’s Disease Society of America. From support groups to research to education and advocacy, you can see all of the amazing work the HDSA does to help everyone affected by Huntington’s diseases, from patients to families, at HDSA.org.
If you watched House, Scrubs, or any number of media over the last few years, you may have heard of HD, but it’s a disease that still not enough people know about. Join me and #LetsTalkAboutHD. See all the help that is being done for today, and all the hope that is there for the future.
Learn more about Huntington’s Disease here.