Columns

Life with Huntington’s disease often feels unpredictable and overwhelming. There are times when the emotional and physical weight feels like too much to carry. In those moments, humor has often been my saving grace — a source of comfort, distraction, connection, and identity. Yet like many tools we turn…

The other week, I hit what I like to call the trifecta of family wins. My wife and daughter actually laughed at one of my puns (a rare feat); I managed to find something my wife, Jill, couldn’t see (she usually finds the things I lose); and, perhaps most…

Huntington’s disease has transformed nearly every part of my life: my body, my emotions, my routines. But one of the most profound changes has been in how I show up as a friend, and how friendship shows up for me. Huntington’s has a way of filtering out relationships. It…

I never expected a lesson in quantum mechanics to help me make sense of my wife’s Huntington’s disease diagnosis. But over the past few years, as I’ve watched Jill navigate the unpredictable nature of this illness, the parallels between her journey and the famous Schrödinger’s cat thought experiment have…

Dating is already hard enough in this world of ghosting, swiping, and shallow connections. Add a terminal illness like Huntington’s disease into the mix and it becomes a minefield of awkward conversations, emotions, and misunderstandings. In the decade that I’ve been living with Huntington’s disease, I’ve been ghosted,…

The night my wife, Jill, threatened to divorce me over a soccer game, I knew she wasn’t being serious. As dramatic as her threat was, we both knew exactly what she was doing. Jill was reminding me about the importance of self-care. When she was diagnosed with Huntington’s…

There is a quiet rebellion in telling the truth about your body, especially when the world would prefer you stay silent, polished, and palatable. When I was diagnosed with Huntington’s disease, I didn’t know how to talk about what was happening inside me. I had learned, like many of…

As the recent heat wave baked our city and much of the country, my family found itself reflecting on simple acts of kindness. Specifically, we focused on how important these things are to me and my wife, Jill, and our daughter, Alexus, both of whom are gene-positive for…

Huntington’s disease doesn’t give you a map. There is no itinerary, no neatly labeled stages that tell you when and where things will change. It’s a disease of uncertainty, one that rewrites its rules day by day, sometimes hour by hour. It doesn’t ask permission. It doesn’t give warning.

Note: This column discusses suicide. Resources for help are listed at the end of the column. In the Huntington’s disease community, I’ve noticed that conversations about depression and suicide are often avoided or treated as taboo. Medical professionals sometimes warn families like ours that suicide may be an outcome…