Columns

Today, on Thanksgiving, I find myself reflecting on what has truly sustained me this year, not just physically, but also emotionally and spiritually. The answer always circles back to one thing: the Huntington’s disease (HD) community. This beautiful, resilient, imperfectly perfect family has given me a sense of belonging…

My wife, Jill, and I recently helped our daughter, Alexus, and her husband move. One night, we had dinner together, along with some of her friends, and it began with the usual polite choreography: exchanging names, shaking hands, and engaging in small talk. By dessert, though, it felt like we’d known each other…

For most of my life, I wore exhaustion like a badge of honor. If I wasn’t busy, I felt behind. I learned early on that to be seen as capable, especially as a Black woman, I had to show strength at all times, no matter how depleted I felt inside.

As we celebrate National Family Caregivers Month, I would like to share an experience I had at a Huntington’s disease advocacy meeting I attended with my wife, Jill, a couple of years ago. It was my first advocacy meeting, and as I stepped through the doors of the…

As the holidays draw near, I find myself glancing at the table and noticing what’s missing: There’s an empty seat where a loved one once sat. Grief takes on a unique shape in the Huntington’s disease community. It’s not just about death; it’s about watching pieces of someone you…

“You pay for it now, or you pay much more later.” My wife’s father said that often. Ken wasn’t a policymaker or a scientist. He was a dad who lived and died with Huntington’s disease, passing in 2011 from complications of the same illness that now tightens its…

When I was diagnosed with Huntington’s disease (HD), I thought the hardest part would be the symptoms: the involuntary movements, the mood changes, the balance issues, the unpredictable fatigue. But I learned quickly that the stigma surrounding a rare disease can weigh just as heavily. The stares, the whispers,…

Second in a series. Read part one. Last week, I introduced Christy Dearien, the author of “Livable Lives: Conversations with the Huntington’s Disease Community.” The book explores how Huntington’s disease (HD) affects relationships, identity, and life decisions. My wife and daughter, as well as Christy’s…

When I stepped off the plane in Boston, I felt a wave of gratitude. Everything about this trip felt first class, from the thoughtful arrangements to the sense that every moment had purpose. I had been invited to speak at Wave Life Sciences, a biotechnology company devoted to advancing…

First in a series. My wife, Jill, and I met Christy Dearien last year at a Huntington’s disease (HD) event in Maryland. Like Jill, Dearien’s brother is gene-positive for HD. Dearien had just published a book, “Livable Lives: Conversations with the Huntington’s Disease Community,” exploring how this…