I’m no Gordon Ramsay. And it’d be insulting to actual professionals if I were to call myself a chef or even a home cook. However, I do feel fairly comfortable in my kitchen. I enjoy cooking,…
Columns
A long time ago, a friend asked if there was anything I wished I could do that was outside my ability, capability, or means. The question wasn’t prompted by familiarity with my Charcot-Marie-Tooth disease (CMT) or anything of the sort. Rather, it was…
I pointed the pistol downrange, lined up the sights, and pulled the trigger. But apart from a small “click,” the pistol in my hands didn’t make a sound. The gun did not go “bang.” Many folks would be unnerved if a…
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…
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…
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