I have decided to get my wife a T-shirt that reads, “It’s not you, it’s me.” I want to get it for her so she can wear it each time she visits a doctor. As if her having Huntington’s disease is not bad enough, eight months ago she started…
Columns
As I mentioned in my debut column of “Negative to Positives” a couple weeks ago, I have a genuine passion for helping those undergoing genetic testing for Huntington’s disease, which is an incredibly challenging life hurdle. Many members of this community watch their parents slowly and progressively decline, and…
I’m protective, a trait typical of most men. For example, I will drive for 18 hours across the country while my wife sleeps in the passenger seat. Jill has trouble sleeping in general, and the motion of the car acts as a sedative, rocking her to sleep. Long…
When I first understood that I was going to be a writer, I did what everyone does upon discovering a passion: I wrote and wrote and wrote. I realized that the best writing gushes with precise details. That quality of writing required a lot of practice. So, I kept a…
On Saturday, the last season of the Netflix series “The Good Place” began streaming. To me, it was the best ending of any TV show I have ever seen. My boyfriend and I cried. I’ll try to avoid spoilers, because…
Like many of you reading, I am from a Huntington’s disease (HD) family. I learned at the young age of 9 that my mom would progressively, slowly lose her ability to do absolutely everything. Around that same time, I also learned I had a 50% chance of inheriting that same…
Life Is Short, So Live It Well
The anniversary of my sister’s death is coming up in about a month. Rose died on Halloween last year after a massive red oak tree fell on the car she was in during a fierce storm. The car was parked in her driveway, and the tree was from a…
My wife, Jill, and I have not been to the local movie theater in months. It’s been so long that we can’t remember the last movie we saw there. By contrast, we averaged about two movies a month before the pandemic struck. With the recent reopening of our town’s theaters,…
This week, I have my first therapy appointment in a while. I hope therapy will give me a structured place to talk about Huntington’s with someone not impacted by it. While my coping strategies have worked so far, I would benefit from someone neutral to talk to. Plus,…
I stumbled into my future profession when I took a creative writing class as a junior in high school. I took the class because it was an elective, something easy. In other words, it was what my teenage self considered a “blow-off,” something that didn’t require studying. Studying, I thought…
Recent Posts
- Routine blood tests may be accessible, cost-effective tools in Huntington’s
- Dancing with grief through the stages of Huntington’s disease
- The real harm of medical gaslighting and what we can do about it
- Soy compound genistein shows survival benefits in Huntington’s mice
- My wife taught me how to process unwanted thoughts after her diagnosis