Columns

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…

Walking into the same lecture hall at Case Western Reserve University where I spoke last October felt like déjà vu in the best way. The rows of white-coated medical students, about 200 this time, buzzed with that unmistakable energy of first-year enthusiasm. Their notebooks were open, laptops glowing, faces eager…

I got home from work the other day and caught a glimpse of a relic on our television set: a 5 p.m. local newscast. Stranger still, my wife, Jill, was actually leaning forward and watching it. On the newscast, some government officials were criticizing diversity, equity, and inclusion, or DEI,…