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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…

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…

One of summer’s guilty pleasures is watching mindless movies. On a recent weekend, Jill and I watched “Bill and Ted Face the Music,” which is so egregiously and heinously bad, it’s good, dude. (This is how the time-traveling characters talk to each other. Needless to say, the dialogue is…

About a week ago, my boyfriend and I treated ourselves to Qdoba for lunch. I am in love with their food, as most people in my life know, especially their queso and chips. They serve way more chips than anyone could…

My mom is dying. She’s 90, has dementia, can’t walk, yells angrily at times, and lives in an assisted living home, where visitors are frowned upon because of the COVID-19 threat. Several days ago, an ambulance picked her up because she had vomited and was unresponsive. Several hours after visiting…

Same But Different, a U.K. nonprofit that uses the arts to bring communities together, is holding a calendar photography competition to raise awareness for rare diseases. Under the theme “A Glimmer of Hope,” the competition is a means to “visually express the hope that exists for people affected by…

Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new medicines for rare disorders and incorporating more patient input into research. The goal is to help the pharmaceutical industry deliver innovative new therapies faster and smarter, the…