Columns

The holidays have a way of magnifying everything: joy, grief, gratitude, exhaustion, hope, and the quiet ache of what we wish life still looked like. For most people, this time of year is about traditions, gatherings, and the excitement of closing one year and welcoming another. But for those of…

My wife, Jill, and I are what you might call the walking wounded these days. My elbow had been swollen and sore for weeks due to bursitis, although I kept telling myself it would get better. It didn’t, until I went to the doctor and got some anti-inflammatory medicine. Jill’s…

Preparing for future care is one of the most intimate, emotional undertakings of the Huntington’s disease (HD) journey. It requires looking ahead to a time we may not feel ready to imagine, while still holding on to the life we’re living now. But no one prepares for this alone.

A couple months ago, my wife, Jill, and I were delighted to attend the wedding of one of our daughter’s closest college friends. Over the years, our daughter, Alexus — or Lexi, as we call her — has introduced us to some of the remarkable friends she made at the…

When most people picture Huntington’s disease (HD), they imagine the outward signs — the chorea, the unsteady walk, the tremors. And while those symptoms are real, they’re only a small part of the HD experience. The truth is, many aspects of this disease can’t be seen by others, yet…

Some days, I view my life like a split screen. On one side is life before Huntington’s disease entered it. On the other is everything that’s come after. Although our lives changed the day my wife, Jill, was diagnosed with Huntington’s in 2018, she hasn’t. Every now…

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…