I was the only Asian-American on my college study-abroad trip to China that year. I couldn’t speak much Mandarin at all, but still, I could recognize the absurdity when a classmate suggested I hold up the sign we created that said in Chinese, “Please point us in the…
On My Own Two — Young Lee
Young Lee (he/him) is a writer with CMT1A living in Cary, North Carolina. He graduated from NC State University in 2013 with degrees in economics and international studies. After working for a few years in finance, Lee decided to shift his attention toward writing and library work. Although Lee first learned he had CMT at a very young age, he didn’t participate much in the CMT community until 2018 when his friend and fellow writer Kevin Schaefer encouraged him to explore and learn more about this very important aspect of his life.
Last in a series. Read parts one, two, and three. While physical strength may seem narrowly and clearly defined, it intersects with many aspects of our lives. It’s a topic I considered with newfound fascination after reading “On Muscle: The Stuff That Moves Us and Why It…

A few days ago, I found myself searching online for Charcot-Marie-Tooth (CMT) memes. While my actions might seem a bit juvenile, I needed a laugh. I was also looking for some insight into the CMT community — this group of people to which I belong due to the nature…
In April 1977 more than 100 people with disabilities entered the Department of Health, Education, and Welfare (HEW) office in San Francisco and, in protest, they refused to leave. Three years prior, Congress had passed Section 504 of the Rehabilitation Act…
I remember being a moody preteen and exasperating my tennis instructor. He was convinced that I wasn’t trying. I was slow to react and sluggish on the court. I didn’t seem to be giving it my all. And, to be fair, he was right. I know I could have given…
Going Over My Old CMT Records
“Referred mainly because of toe-walking.” “Well, these few words solve a bit of a mystery for me,” I thought. A few weeks ago, I contacted my former pediatrician’s office to see if they had my old medical records. My folks have always kept good…
Jamal Hill likes to keep a busy schedule. After all, he’s hoping to qualify for the 2020 Paralympic Games in Tokyo. And although he’s currently the No. 1 ranked U.S. Men’s Paralympic swimmer in the 100-meter freestyle, he isn’t yet guaranteed a spot in the Paralympics. I…
We Are More Than Our Mutations
Linda Crabtree’s autobiography, “CMT and Me,” begins with loving descriptions of her parents. Her words, accompanied by childhood photos printed on the pages, gave me a vivid sense of what kind of people her parents were. I was eager to lose myself in Crabtree’s imagery of growing up…
Five years ago, I had a conversation with one of my writer friends. I had heard through the grapevine that she was working on a new story: a thriller featuring a protagonist with Charcot-Marie-Tooth (CMT). I was surprised at her choice of lead character because CMT isn’t a well-known…
When I meet up with old college friends, we often spend time reminiscing. We recall late nights, trips, and past relationships. Looking back, we think about how much has changed in our lives; our careers, relationships, and bodies have altered a lot in the decade since graduation.
This past week, I grabbed lunch with an old friend, Kevin Schaefer. He writes a great column for SMA News Today. Our conversations over lunch usually revolve around nerdy topics such as the latest trailer for “…
About 10 years ago, I found myself walking down a busy side street near one of the larger night markets in Taipei, Taiwan. No direct family members lived there, and although I am ethnically Chinese, my Mandarin is extremely limited. In short, I’m what those in the Asian…
Once, while I was walking down the hallway with my classmates, my high school Spanish teacher asked me if I had hurt my ankles. It may have been the first time he had watched me walk. He then proceeded to walk ahead of my group to demonstrate my…