When a batter hits a baseball in just the right way, the impact makes a sound that’s pretty darn satisfying. It’s the distinctive “crack” that many folks think of when they think about their favorite baseball highlights. It’s the sound associated with evenings in packed stadiums, cold beer,…
On My Own Two — Young Lee
Young Lee (he/him) is a writer with CMT1A living in Cary, North Carolina. He graduated from NC State University in 2013 with degrees in economics and international studies. After working for a few years in finance, Lee decided to shift his attention toward writing and library work. Although Lee first learned he had CMT at a very young age, he didn’t participate much in the CMT community until 2018 when his friend and fellow writer Kevin Schaefer encouraged him to explore and learn more about this very important aspect of his life.
Those of us in the Charcot-Marie-Tooth disease (CMT) community face unique burdens, pains, and grievances that most others aren’t aware of. This is a topic that George Simpson, a volunteer at the Charcot-Marie-Tooth Research Foundation (CMTRF), cares deeply about. He believes that raising awareness of the costs associated…

If I’m going to wield a weapon and fight in a war, I want to be conscious of the intricacies of the weapon I’m supposed to wield. And I’d certainly want to know which side I’m fighting on. A character in one of my favorite movies…
I had just exited the county building after getting my second shot of the COVID-19 vaccine and was making my way across the parking lot toward my car. Then I heard a man calling out from behind me. When I turned…
I’m no Gordon Ramsay. And it’d be insulting to actual professionals if I were to call myself a chef or even a home cook. However, I do feel fairly comfortable in my kitchen. I enjoy cooking,…
A long time ago, a friend asked if there was anything I wished I could do that was outside my ability, capability, or means. The question wasn’t prompted by familiarity with my Charcot-Marie-Tooth disease (CMT) or anything of the sort. Rather, it was…
I pointed the pistol downrange, lined up the sights, and pulled the trigger. But apart from a small “click,” the pistol in my hands didn’t make a sound. The gun did not go “bang.” Many folks would be unnerved if a…
Standing outside a chicken hatchery, a man smokes a cigarette while watching his young son play. He and his wife are new to town and they both have been working at the hatchery segregating male chicks from the female chicks in order to make ends meet. It’s not…
For much of my life, I couldn’t imagine a better world for those of us with disabilities, rare diseases, and chronic conditions. I just wasn’t thinking about the disability rights movement. I didn’t feel like I fit into what I had perceived as “disabled,” and I didn’t really…
Four weeks ago, I heard some unsettling news coming from my radio. And when I turned to my Twitter feed, I saw disturbing images parading across my computer screen. At the time, I didn’t know what to feel or how to process what was going on. However, I…
Because of Charcot-Marie-Tooth disease, I’m always a bit wobbly whenever and wherever I walk. But if you think I look unsteady walking on pavement, you should see me walking on a sandy Carolina beach. For me, it’s…
In Asian culture, it’s important to take your shoes off before entering a house. It’s a sign of respect. When visiting friends for dinner parties or any kind of gathering, you can almost always find a corner near the doorway where shoes congregate.
I had a conversation with someone recently about the positive things we were grateful for in the past year. Perhaps it is a typical topic of discussion this season. However, this year hasn’t felt like a normal year for me, and I know many others feel the same.
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