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.
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…

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…
I never considered myself high-strung or irritable until I entered a spa for the first time last weekend. The employees spoke in such hushed and relaxed tones that I felt hyperactive and tense by comparison. I was there for a float therapy…
I last sat on my piano bench over a year ago. For most of the past year, I had been neglecting the bench’s original purpose by stacking library books and old notes on it. But a few days ago, I decided to clear it off, and ended up…
Is it wrong for me to say that I find Charcot-Marie-Tooth disease (CMT) undesirable? Is it entirely due to internalized ableism when I say I wish I did not have CMT? When we talk about the problems…
I don’t like going to the gym. But, I like being at the gym. And I really love returning from the gym. I reconfirmed these facts last week. A few days ago, North Carolina relaxed some…
Thoughts and memories of recess games and gym classes rolled into my mind last week as I flipped through the pages of “The Ables,” a young adult novel by Jeremy Scott. It’s a story about a group of…
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