On My Own Two — Young Lee

When those of us with Charcot-Marie-Tooth disease (CMT) bring up our condition, a common response is, “So how does that affect your teeth?” It’s a frustrating misconception, and we may find ourselves wondering if people with other rare diseases have to deal with the same lack of understanding. But when…

I’m sure most CMTers will agree that Charcot-Marie-Tooth disease (CMT) often sucks. It can feel like there’s nothing redeemable about living with this chronic condition. CMT wears away at our physical strength and stability, leaving us accident-prone. It alters the body in unexpected and undesirable ways. It drains our…

I have the words “Charcot-Marie-Tooth” set as one of my Google alerts. As a result, I’ve come across many articles about CMT and CMTers. I love this. For me, it’s a great way to stay informed about the CMT community and hear about some of the…

I made my friend from childhood wait while I put on my ankle-foot orthoses (AFOs). We had just finished eating our eggs and toast at a fancy breakfast place, but we hadn’t seen each other in three years, so we still had some catching up to do. My friend…

When I was a kid, I felt as if I were the only one with Charcot-Marie-Tooth disease (CMT). I felt like I was one of one. Though I did have my father as a CMTer to look up to, when it came to relationships on the…

If I woke up early enough as a child, I could catch my grandmother, my “Po Po,” doing her tai chi exercises in an open area of our house right by the front door. For a long time, tai chi was a part of her morning…

I can’t say I’ve always loved every moment of being Asian American, but I’ve always felt connected to Asian American culture. And I appreciate that. I see myself in Asian American stories. The way we show love feels ingrained in me. The jokes are familiar.

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…