There was a time during my childhood when in my mind, I was “Braces Boy” — part boy, part brace. I was in middle school and already wearing ankle-foot orthoses (AFOs) to help with my ankles, which were and continue to…
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.
Last in a series. Read part one. In her latest fantasy novel, “Katabasis,” R.F. Kuang constructs a character who serves as both an oppositional moral force for her two protagonists and as a goal that her protagonists pursue to the farthest reaches of hell. That character is…

I felt like a child again — and not in a good way. It was a shock and I felt pathetic. But while holding the cheap pair of disposable chopsticks in my trembling hand, unable to pick up my food, I came to a few realizations about my…
At the beginning of every episode of “Mister Rogers’ Neighborhood,” Fred Rogers walked through a door and greeted his audience by singing the show’s theme, “Won’t You Be My Neighbor.” I’ve…
For many years, my childhood bedroom featured a photo of Mr. McFeely, the friendly mailman from the beloved children’s television series “Mister Rogers’ Neighborhood.” It was as a souvenir from a meet and greet my family attended. While…
For the past few weeks, I’ve been studying sequences of hand movements and letter combinations. For example, U, R, U’, L’, U, R’, U’, L was one combination I had trouble with. As were F, U, R, U’, R’, F’ and R’, D’, R, D, U. If these…
The North Carolina Museum of Art has a few paintings by Andrew Wyeth. One of them is “Weather Side,” which depicts a side of the house where Christina Olson lived. Olson…
Until recently, I never took anything written by art critics personally. But a few weeks ago I started reading criticism of Andrew Wyeth’s painting “Christina’s World.” With each critique, it was as if I were looking…
Through her loosely autobiographical graphic novel, “El Deafo,” author Cece Bell introduces readers to her childhood self as she tries to navigate her way through relationships and hijinks at school while managing her deafness. I write “loosely” because Bell…
“I like your shirt.” I didn’t expect to hear such a comment while wearing my Charcot-Marie-Tooth Association (CMTA) T-shirt. It happened twice in the past two months, and when I turned around I didn’t find a fellow CMTer, a…
I leave strange footprints. Luckily, I usually walk on solid ground and don’t need to think about them. Most days, I only encounter paved streets and driveways, carpeted floors, and grassy fields. And I like that. After all, anything that can assist with stability is…
Thoughts on CMT and ‘Askew’
“Askew,” a work of art by American painter and sculptor Roxy Paine, stands just outside the West Building at the North Carolina Museum of Art. It’s an almost 50-foot, tree-like metal structure, with a trunk and…
At the start of 2019, I knew little about Charcot-Marie-Tooth (CMT). My lack of knowledge about the disease meant that I had gaps in understanding of myself, a person with CMT, and a beneficiary of a wider disability rights movement. I owe much of my growth this year…
Recent Posts
- 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
- Advocates aim to raise visibility of CMT during Awareness Month September 10, 2025
- In youth fitness programs, inclusion is the key September 9, 2025
- Zeus KAFO brace aims to support mobility in CMT, other conditions August 13, 2025
- Unraveling the Gordian knot of sleep issues and CMT health July 31, 2025
- Cure CMT, Tamarack join to expand patient access to orthotic devices July 9, 2025