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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…

The other evening, my wife, Jill, and I were watching a YouTube show that explored how people cope with loss. As the narrator was describing the seven stages of grief — shock, denial, anger, bargaining, depression, acceptance, and hope — Jill clicked the pause button. In our years together, especially…

There is a particular kind of pain that comes from knowing something is wrong in your body and having medical professionals tell you otherwise. For many people living with Huntington’s disease, the road to diagnosis is already long, confusing, and frightening. But for some of us, that road…

Intrusive thoughts used to feel like my wife Jill’s own private crime scene, especially after she was diagnosed as being gene-positive for Huntington’s disease. As she describes it, they were the kind of thoughts that no one warns you about, including sudden flashes of worst-case scenarios, images of…

One of the hardest parts of living with Huntington’s disease is when other people don’t believe me when I discuss my health. I’ve spent years being challenged by medical professionals, questioned by strangers, and even pushed out of organizational spaces that were supposed to support people like me. It…

The women in my life — my wife, Jill, and our daughter, Alexus — are the kind who can do absolutely anything they set their minds to. Both would call themselves feminists, not just in words but in the way they live: taking on challenges, speaking their minds, and refusing to let…

There is a type of grief that isn’t always discussed in the Huntington’s disease community, even though many of us live with it every day. It’s the grief of losing versions of yourself while still being very much alive. I have grieved the loss of some of my abilities.

Rare Disease Week at the end of February reminded me of the time when my wife, Jill, attended a rare disease advocacy panel several years ago. When she arrived home afterward, she was visibly frustrated. As someone diagnosed with Huntington’s disease and as a fierce advocate not only…

One of the most exhausting parts of living with Huntington’s disease isn’t always the symptoms. Sometimes it’s having to constantly explain them (or at least try). There’s a phrase many of us with chronic illness have heard far too often: “But you don’t look sick.” People usually say it…

Last October, I wrote about a potential gene therapy for Huntington’s disease, an illness my family is very familiar with, as my wife, Jill, and daughter, Alexus, are both gene-positive. The experimental treatment is called AMT-130. According to uniQure, the therapy’s developer, top-line data from…