“TrumpWearsAdultDiapers”: It’s a hashtag I first noticed trending in the United States on the morning of June 14. And I remember looking at it with mixed emotions. On one hand, I think it’s a small sign of progress toward…
Recently, I joined a photography group for moms, and with them, I’ve been learning new techniques to feed my passion. However, there are times that I find these techniques difficult due to Charcot-Marie-Tooth (CMT). My hands sometimes shake which makes the photo blurry, or I hit the shutter too soon…
The indoor track of my alma mater’s gym smells like rubber and sweat. It has a specific warmth to it. The repeated impacts of dozens of feet send shockwaves through the track and almost make it feel alive. It’s been more than 10 years since I’ve…
A couple weeks ago when I spoke with Steve O’Donnell, a board member of the Charcot-Marie-Tooth Association and founder of the nonprofit Therapies for Inherited Neuropathies, I was struck by his enthusiasm and can-do spirit.
“Just keep moving.” For Steve O’Donnell, a Charcot-Marie-Tooth Association board member and founder of the nonprofit Therapies for Inherited Neuropathies, those are words to live by. He calls them his life’s slogan. The slogan helps him self-motivate to…
A few months ago, I was at a photography club meeting and the leader reminded us to be gentle with ourselves. The comment really hit home. I know the benefits of self-care and what I should do to take care of myself. But do I always follow through? No,…
During this time of self-isolation due to COVID-19, I’ve often thought to myself, “At least I can still play video games and watch esports.” And I know for many others, gaming has been a nice outlet and a source of comfort and…
After about three weeks of most nonessential workers in my state self-isolating due to COVID-19, I began to see a steady stream of codes and screenshots appearing on my social media feeds. It was an influx of Animal Crossing posts. Animal Crossing, a life-simulation video game, invites players…
In Virginia, we are entering our second month of social distancing. We have a long way to go, but we are learning to adjust. My state has been given the directive to “stay at home” until June 10. That sounds like such a long time to be home. My…
During tough and stressful times, it’s important to remember to hold each other close. This time, though, let’s take that figuratively and not literally. A recent conversation with a Charcot-Marie-Tooth community icon, Bernadette Scarduzio, reminded me of this lesson. It may…
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