When I was in college, Facebook groups and communities with names like “I want to punch slow walkers in the head” or “Slow walkers deserve to be kicked” were pretty trendy. Several of my friends joined such groups and proudly displayed their memberships…
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.
I recently got new ankle-foot orthoses (AFOs). After losing a significant amount of weight over the years — in part because my AFOs allowed me to walk more — my previous pair no longer fit. The whole process went as well as I could have hoped. However, it brought to…

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,…
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.
Recent Posts
- Renowned European geneticist bringing expertise to CMTA as new adviser
- Finding productive ways to channel my frustration with CMT
- Raising awareness of the hidden costs of Charcot-Marie-Tooth disease
- RNA therapy shows encouraging results in CMT1A animal tests
- Unpacking my beliefs on physical strength, part 4