Columns

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…

Dear past me, I know you’re scared. I know your hands are trembling, not just from the involuntary movements beginning in your fingers, but from everything this diagnosis means. Huntington’s disease. You heard the words, but your brain hasn’t fully let them in yet. You’re still sitting in…

When I was a child, I never missed an episode of the television series “The Incredible Hulk.” I was fascinated by Bruce Banner’s struggle — how he tried to control the monster inside him as he turned green, his muscles bulging out of his clothes; how he fought…

I’ve stood in front of classrooms filled with bright-eyed medical students in their freshly pressed white coats, ready to learn the clinical details of Huntington’s disease. They take notes, nod along, and ask technical questions. But when I begin to speak not from a textbook but from lived experience,…

My wife, Jill, who’s gene-positive for Huntington’s disease, has for months been riveted by the murder trial of Karen Read, a Massachusetts woman accused of killing her boyfriend, a Boston police officer, in 2022. Last month, a jury found Read not guilty of second-degree murder and manslaughter…

When people find out I have Huntington’s disease, there’s often a long pause, followed by a look I’ve come to recognize all too well: pity. Their eyebrows crease. Their voices drop an octave. They fumble for comforting words that often make me feel anything but comforted: “I’m so sorry.”…

Whenever there’s another failed clinical trial for Huntington’s disease, my wife, Jill, who is gene-positive, and I always try to find a silver lining. With each year that passes, doing that becomes more difficult. Last fall, after another trial failed, Jill said to me: “Sometimes it’s due to…