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 by Young Lee
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…
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