On My Own Two — Young Lee

I’ve often looked to my father as an example. That’s been true in many contexts, but it also includes his living well as a person with Charcot-Marie-Tooth (CMT) disease. From a young age, I’ve known that both my father and I have CMT. Throughout my childhood, I was…

Like many, I’ve enjoyed watching incredible athletes showcase their abilities at this year’s Paris Olympics and Paralympics. The Olympic Games always remind me of all the forms athleticism can take. There are countless sports out there that are all recognized as valid and worthy endeavors on a global stage.

Sometimes it feels like some of us live in separate worlds with different rules and dynamics. I’ve noticed this while chatting with friends, co-workers, and even strangers about Charcot-Marie-Tooth disease (CMT), my symptoms, and what it’s like living in a society not quite optimized for people with disabilities.

A few weeks ago I saw my primary care physician for a routine physical exam, the first I’ve had in person since the height of the COVID-19 pandemic. I updated him on significant life events and asked a few general questions about my Charcot-Marie-Tooth (CMT) symptoms as well…

I don’t know if it’s possible to live with Charcot-Marie-Tooth disease (CMT) without developing a long-term relationship with physical pain. Recognizing this, the Hereditary Neuropathy Foundation (HNF) provides a guide to common pain remedies called the “ABCs of CMT Pain Management.” I’ve been referencing this guide for…

I’m an Asian American with Charcot-Marie-Tooth disease (CMT). Of course, I’m more than this, but these two cherished identities of mine interact with each other, sometimes in profound ways. The way I experience life as an Asian American is altered due to my CMT, and vice versa. It’s a…

At my day job, I work in a midsized public library system, which I really enjoy. I help folks find books and other resources and work to make them feel more connected to their community. We don’t charge for our services because we believe in the philosophy that everyone deserves…

If being a man truly meant being as swift as a coursing river, with all the force of a great typhoon, with all the strength of a raging fire, all while being as mysterious as the dark side of the moon, every guy with Charcot-Marie-Tooth disease (CMT)…

There’s no road map of what to expect with a disability or chronic condition such as my disease, Charcot-Marie-Tooth (CMT). Sure, I have typical symptoms to consider: weak hands and ankles, foot drop, fatigue, and chronic pain. But I have my own unique life with my disease, just…

It’s getting colder in my corner of the United States. I can feel it in my hands. For me, it’s not just the sensation of the chilly atmosphere nipping at my bare skin. My hand strength also seems to be drained after time spent in the cold. I’ve heard anecdotally…

A few weeks ago, I spoke with John Nixon, a bodybuilder with Charcot-Marie-Tooth disease (CMT), about his experiences in the sport. During our video chat, Nixon highlighted one key reason for his appreciation of fitness and bodybuilding: Unlike many things in our consumerist society, it’s not immediately attainable.

John Nixon, like me, has Charcot-Marie-Tooth disease (CMT). Based on how he tells his story, the CMT symptoms he’s dealt with since childhood are more severe than mine. When we spoke a couple of weeks ago via video chat, he told me that his feet have been deformed…