Columns

Some experiences stay with you long after you return home, and my recent trip to New Orleans for advocacy work was one of them. I arrived expecting to share my story, learn more about Huntington’s disease (HD), and connect with members of the HD community. What I experienced was…

Years ago, my wife, Jill, was at a party talking with a friend. The conversation turned personal, and her friend asked a difficult question. It was the kind of question people sometimes ask when they want to be reassured but are afraid to hear what someone who knows them well…

Living with Huntington’s disease (HD) has taught me a great deal about healthcare, both the kind that makes you feel supported and the kind that leaves you questioning whether you were truly heard. As a Black woman living with HD, I have learned that being believed is not always…

My wife, Jill, who is gene-positive with Huntington’s disease (HD), has always believed that if something matters to you, you should pay attention to the people in charge of it. Lately, that has meant watching U.S. lawmakers much more closely. As someone living with a rare disease, she sees…

There are moments when looking at my mother feels like looking into a future I am trying very hard not to fear. My mother lives in a nursing home now. She is unable to walk, wears adult undergarments, and depends on others for many of her daily needs. I am…

For families affected by Huntington’s disease, some courtroom trials — especially those involving a defendant’s deteriorating mental health — are impossible to watch without feeling the weight of the tragedy at their center. The recent Lindsay Clancy trial is one example. Clancy was a nurse from Massachusetts whose…

There is a particular kind of vulnerability that comes with telling someone you have Huntington’s disease (HD). It can happen in friendship, dating, or any new relationship where you are trying to decide how much of yourself to reveal and when. For me, disclosure has never felt…

I never met Dolly Parton, but like millions of others, I felt like I knew her. It’s easy to feel this way because of her music, laughter, generosity, the stories she told, and the remarkable way she seemed to make room for everyone. She was successful, wealthy, and larger than…

I’ve never been completely comfortable with the pressure that comes with the theme of “starting over.” We’re often encouraged to treat a new month or year, a birthday, or even a simple Monday as an opportunity to become a better version of ourselves. We make resolutions, buy planners, create routines,…

Imagine anger residing at one end of your home and autonomy at the other, with Huntington’s disease (HD) sitting right in the middle. Before my wife, Jill, found out eight years ago that she is gene-positive with HD, she could usually tell when she was becoming irritated. She…