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…
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.
There’s a part of me that can’t shake the belief that physical weakness is woven into the fabric of my identity. This realization surfaced unexpectedly after I read about Hafþór Björnsson, the Icelandic strongman and world record holder for the heaviest deadlift, who sports a tattoo just below…

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…
My paternal grandmother turned 97 this week. As much as I would have liked to be with her to celebrate her birthday, I’m trying to limit my in-person contact with the elderly during this chaotic time. But I’m glad my other family members and I were at least…
Although there are many words to describe the disabled experience, I’ve been thinking a lot about the word “wariness” this week. Many of us in the disabled community are indeed wary of many things. We go through great lengths to anticipate pitfalls, challenges, and risks in our everyday…
I was manning three active burners on the stovetop, deep into my food preparation for the week. On one of the front burners was a pan of chicken skins sizzling in a pool of rendered fat. In a pot to the side, onions, carrots, and celery were sweating…
A scene from the animated Nickelodeon show “Avatar: The Last Airbender” has been on my mind recently. It’s an exchange between a character named Iroh, an old and wise retired general, and his nephew, Zuko, a young and…
About a year ago, my sister and I went to an arts and crafts store. Upon entering, I instinctively wanted to steer the shopping cart, an offer my able-bodied friends and acquaintances often appreciate. But before I could get a complete sentence out of my mouth,…
Recent Posts
- Unpacking my beliefs about physical strength, part 1 February 24, 2026
- NMD Pharma’s oral drug ignaseclant improves muscle strength in CMT study February 17, 2026
- Healthy eating can be challenging for adults with CMT, new study finds February 12, 2026
- Considering the impact of AI on the disability community February 10, 2026
- CMT patient advocate to be honored by MDA for helping advance research January 15, 2026
- Rare mutation drives woman’s unusual CMT symptoms: Report December 11, 2025
- Ankle, foot surgery allows adults with CMT to achieve personal goals November 13, 2025
- Existing in the tension between thoughts and actions, part 2 November 11, 2025
- Existing in the tension between thoughts and actions, part 1 October 21, 2025
- Partners team up for long-awaited trial of CMT4J gene therapy October 8, 2025