Columns

I can feel it before anyone says a word. It’s in the pause that comes after I mention Huntington’s disease. It’s in the quick scan of my body, my hands, my face, the way I shift my weight like they’re looking for proof. It’s in the softened voice, the…

If there’s one thing Huntington’s disease (HD) has taught me and my wife, Jill, who is gene-positive with the illness, it’s that rest isn’t a reward; it’s a necessity. Between the disease’s relentless advancement, the daily logistics of symptom management, and the invisible emotional toll, we sometimes forget that…

The thing about being present in public is that people think it’s just a mindset. Like you decide to show up, take a deep breath, smile, and you’re there — grounded, confident, fine. But when you live with Huntington’s disease, being present in public can feel like a full-time…

For years before her 2018 diagnosis with Huntington’s disease (HD), my wife, Jill, worked with children at a school. One of her fondest memories is of seeing shy children find their voice thanks to a teacher’s encouragement. “All they needed,” she said, “was for someone to say to them,…

Some days, my brain feels like it’s buffering. Not in a dramatic, emergency kind of way. It’s more like I’m standing in my kitchen with a cup in my hand, trying to remember why I walked in there in the first place. I can see what needs to happen next,…

When a building catches fire, most of us instinctively move back. We watch from the sidewalk, hoping the flames die down, grateful for any distance between us and the danger. Firefighters are different. They hear the alarm, size up the risk, and move toward the heat, knowing there are no…

Dating with Huntington’s disease (HD) has taught me how quickly people confuse honesty with a warning label. I used to believe that telling the truth early on in the process was the kindest thing I could do. I still believe in honesty, but I’ve learned that it doesn’t protect…

Every year, I write my wife, Jill, something romantic in this column, such as a Valentine’s Day play. This year, she looked at me, half amused and half worried, and said, “Carlos, I don’t know how you haven’t run out of puns by now.”…

February has a quiet way of exposing what the holidays can hide. In December, people check in. They send the “thinking of you” texts. They ask how you’re holding up. Even the people who don’t know what to say still make an effort to say something, because the season almost…

Breaking news: We have a new dog. He’s a puppy. His name is Dexter, and he’s perfect. He’s perfect at eating little things that have accumulated on the floor of our home, such as dust balls, little scraps of paper, and tiny pieces of food. He’s perfect at walking so…