The other day, someone posed the question, “What do you hate the most about having Charcot-Marie-Tooth?” I could probably write a book about what I hate about this disease. The same person also asked, “What do you like the most about having Charcot-Marie-Tooth?” That proved to be harder…
Columns
This past week, I grabbed lunch with an old friend, Kevin Schaefer. He writes a great column for SMA News Today. Our conversations over lunch usually revolve around nerdy topics such as the latest trailer for “…
About 10 years ago, I found myself walking down a busy side street near one of the larger night markets in Taipei, Taiwan. No direct family members lived there, and although I am ethnically Chinese, my Mandarin is extremely limited. In short, I’m what those in the Asian…
Columns
Proud of Me for What?
Why do people tell me they are proud of me for going to the gym? Is that something that I should be proud of? Yes, it is true that going to the gym and working out is not always the easiest thing to do, but does that make it a…
Once, while I was walking down the hallway with my classmates, my high school Spanish teacher asked me if I had hurt my ankles. It may have been the first time he had watched me walk. He then proceeded to walk ahead of my group to demonstrate my…
After walking around Jamestown Settlement this past week, I’m really wondering how much longer I, as a schoolteacher, can go on these big field trips. I am not one of those people who uses my disability as an excuse, but this trip took a toll on me. I have…
Charcot-Marie-Tooth. The first word is pronounced like “Shar-ko.” And it has nothing to do with shark teeth. That’s how Arlene, the protagonist of “Arlene on the Scene,” clears up the confusion related to her disease’s name.
At my Weight Watchers meeting, the coach asked us what activities we would do if we had no restrictions. I began thinking about it. I have Charcot-Marie-Tooth type 1A and wear ankle-foot orthoses; therefore, I am somewhat limited in my choice of activities. Some things are just not…
I couldn’t help but smile when I saw Bernadette Scarduzio pop up in the final moments of Episode 3 of the sixth season of “Orange Is the New Black.” Her character has no dialogue, but she and her scooter are on screen long enough to make an impression…
The 2013 documentary film “Bernadette” was a milestone for Bernadette Scarduzio in many ways. It wasn’t just the first movie project she was a part of, it also was a coming out for her. The documentary marked the first time she came out as gay and her first time…