The indoor track of my alma mater’s gym smells like rubber and sweat. It has a specific warmth to it. The repeated impacts of dozens of feet send shockwaves through the track and almost make it feel alive. It’s been more than 10 years since I’ve…
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.
Worrying can be such a waste of imagination. A friend recently reminded me of this common aphorism. Instinctively, it’s a sentiment I find agreeable. However, I often wonder what such a belief actually looks like in practice. Life, after all, is filled with ambiguity. How do we each find the…

A couple weeks ago when I spoke with Steve O’Donnell, a board member of the Charcot-Marie-Tooth Association and founder of the nonprofit Therapies for Inherited Neuropathies, I was struck by his enthusiasm and can-do spirit.
“Just keep moving.” For Steve O’Donnell, a Charcot-Marie-Tooth Association board member and founder of the nonprofit Therapies for Inherited Neuropathies, those are words to live by. He calls them his life’s slogan. The slogan helps him self-motivate to…
During this time of self-isolation due to COVID-19, I’ve often thought to myself, “At least I can still play video games and watch esports.” And I know for many others, gaming has been a nice outlet and a source of comfort and…
After about three weeks of most nonessential workers in my state self-isolating due to COVID-19, I began to see a steady stream of codes and screenshots appearing on my social media feeds. It was an influx of Animal Crossing posts. Animal Crossing, a life-simulation video game, invites players…
During tough and stressful times, it’s important to remember to hold each other close. This time, though, let’s take that figuratively and not literally. A recent conversation with a Charcot-Marie-Tooth community icon, Bernadette Scarduzio, reminded me of this lesson. It may…
Hello, I hope you are well. It’s a difficult time for many of us no matter where we live, as the COVID-19 virus has spread to most of the world by now. By the time this is published, I don’t know what the situation will look like. However,…
As an Asian American, I shared the joy and pride felt by much of the global Asian community when “Parasite,” a South Korean genre-bending thriller directed by Bong Joon Ho, won best international feature film, best picture, best…
Social media can be an overwhelming vortex of opinions, grievances, and feelings. That is especially true of my Twitter feed. At its best, my Twitter feed is where I can pass the time laughing at memes from friends and musings from celebrities. At its worst, it is home…
While scrolling through my Twitter feed recently, I came across a tweet from Charis Hill, an advocate for disability rights. The tweet was a list of things that every disabled person has supposedly heard at least a few…
A few years ago at a previous job, a co-worker confessed to me that she used to think I was a bit gross because she thought I had frequent nosebleeds and didn’t immediately throw my used tissues away. She had seen tissues stained a blood-red color strewn on…
When I was in college, YOLO — the acronym for “you only live once” — became popular. I think it was supposed to be inspirational, encouraging us to take advantage of our time and do something worthwhile. However noble the intention was, that’s not what it became. I…
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