Young Lee,  —

Last week, I wore my ankle-foot orthoses (AFOs) while taking an evening stroll. I marveled at how much easier walking is with AFOs than without them. It was one of the highs of my week. But I also had some lows, when what I call “CMT moments” happened. For…

I arrived at the venue more than an hour before my buddy’s wedding rehearsal was supposed to start. Even though the rehearsal itself was a kind of preparation, and my role in the ceremony wasn’t very big, I wanted to check out and prepare for a few things. Some…

When it comes to doing cardio at the gym, I’ve always preferred the stationary bike to the treadmill. I have yet to fall off a stationary bike, but I’ve fallen off a treadmill several times in my life. “Heel-toe, heel-toe, heel-toe-toe. Wait, that’s not right!” “Heel-toe, heel-ankle. Ouch!”…

When Bernadette Scarduzio, a Charcot-Marie-Tooth disease (CMT) patient-advocate and star of the CMT documentary “Bernadette,” was in the midst of filming her documentary 10 years ago, she often thought about all the celebrities that appear in movies and on television. She wondered if any of them shared her…

Let’s talk about disability fashion. Word on the street is Gen-Z killed skinny jeans. The ritual of stretching your pant legs over every contour of your thighs and calves before leaving home is apparently over. I’m not shedding any tears. I’m just one guy with Charcot-Marie-Tooth disease (CMT) in…

With great effort, a woman pulls herself up from a wheelchair and into the back seat of a car. Her body is weak, and she can’t seem to move her legs. She wasn’t always like this, though, unable to walk and barely able to fight. No, she was once a…

I got a new handicapped parking placard a few weeks ago. Two, in fact, as the old one had expired. I even splurged on nice plastic covers to protect them. Why did I feel the need to get new placards? Although I have Charcot-Marie-Tooth disease (CMT), a condition that greatly…

I have a memory of my brother and me from at least two decades ago, when I was a small child. My brother and I are relaxing on the couch at my grandparents’ house. It’s a lazy afternoon, and the two of us are just lounging around. But…

My brother, 14 years my elder, tells me he remembers once losing track of 6-year-old me during one of our family trips to Washington, D.C. Specifically, it was at the Lincoln Memorial while it was fairly crowded. He tells me that when he found me moments later, I was in…

“No, it’s not really my thing,” I responded to a friend and self-admitted “gym junkie” in college when he offered to show me the ropes in weight training. These days, I regret turning down his offer. If life were a video game, my friend’s offer would have been the…