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…
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.
Worrying can be such a waste of imagination. A friend recently reminded me of this common aphorism. Instinctively, it’s a sentiment I find agreeable. However, I often wonder what such a belief actually looks like in practice. Life, after all, is filled with ambiguity. How do we each find the…

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.
I was looking at some Christmas decorations at a store the other day, a set of oversized, faux gift-wrapped boxes complete with bows and lights. And they reminded me of something I had heard before about disabilities, including Charcot-Marie-Tooth disease (CMT): For those of us affected by disability, we can…
My Chinese professor in college once told my class that according to popular belief, a person who hasn’t been to the Great Wall of China cannot yet call himself a man (or woman). When I was…
A few months ago, because I’m on its mailing list, I received an email from the Hereditary Neuropathy Foundation highlighting an opportunity to audition for a role in a Hallmark Christmas movie. The casting call described a need for a woman in her…
Reconnecting With Nature
The trees in North Carolina are beautiful right now. I don’t even mind running into traffic during my commute to work these days. The trees that line the route are gorgeous draped in their autumn colors. But seeing nature’s beauty from the vantage of a car…
It’s the reason I wore a T-shirt emblazoned with the words “Charcot-Marie-Tooth” to begin with: to spread awareness and to encourage questions. But when I heard a voice behind me ask about CMT while I was standing…
Many folks are familiar with the saying that there is always light at the end of the tunnel. It’s a nice expression that refers to the fact that unfortunate circumstances are often temporary. But author and retired Navy SEAL David Goggins writes in his book, “Can’t Hurt…
Recent Posts
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- Guest Voice: Using my platform to enact change in the CMT community
- A conversation with two disability advocates with CMT, part 2
- Patient advocates are getting real for this year’s CMT Awareness Month