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In life with Huntington’s disease (HD), our family’s calendar fills up quickly. There are checkups, follow‑ups, and scans that land on days you would rather spend at the park or at a movie. Maybe that’s why, when a birthday shows up on the calendar, our family treats it like…

While reflecting on Huntington’s Disease Awareness Month, I am reminded that advocacy isn’t something I do only on a stage, in a column, or at an awareness event. Advocacy shows up in every part of my life, including the moments when I’m simply trying to receive basic medical…

My wife, Jill, who is gene-positive with Huntington’s disease (HD), shared a serious issue she’s been struggling with lately: “I hate showers, and if I hate them now, how will I push through the uncomfortableness when several HD symptoms make it too difficult?” she said. This was not the…

Editor’s note: This story includes discussion of suicide. If you or someone you know needs help, the national suicide and crisis lifeline in the U.S. is available by calling or texting 988. There is also an online chat at 988lifeline.org. Internationally, find a suicide prevention helpline at findahelpline.com. While Huntington’s…

Mothers are often told that, once they have a child, their heart now lives outside their body. For years, that line sounded like something stitched on a pillow you buy at a Hallmark store and then feel guilty about never dusting. For my wife, Jill, it stopped being a cliche…

One of the hardest things Huntington’s disease has taught me is how to accept help without attaching shame to it. I live independently, and I am proud of that. My independence matters deeply to me. It’s not just about paying bills, keeping appointments, or managing my home. It’s about…

The first time my wife, Jill, almost cried in front of me, Huntington’s disease (HD) was already part of our story, just not the headline yet. It was there in the background, like a low drumbeat under all the usual early-relationship excitement: new love, big plans,…

For a long time, I confused boundaries with rejection. I thought boundaries meant distance. I thought they meant being difficult, cold, or selfish. I thought that if I loved people deeply enough, I should be able to keep showing up, giving, understanding, and absorbing whatever came my way. I believed…

Last month, I walked into our kitchen to find what looked like a crime scene. Blood drops dotted the counter, and my wife, Jill, stood at the sink with bandages wrapped around several fingers, laughing as she rinsed off our newly sharpened knives. My heart sank. My first thought wasn’t…

There is a particular kind of exhaustion that comes from being sick and still feeling responsible for everyone else’s comfort. It is one thing to manage Huntington’s disease. It is another thing entirely to manage the emotions, assumptions, awkwardness, and reactions that can swirl around it. Sometimes I walk…