Touch, taste, smell, hearing, and seeing: I don’t know if things are different these days, but when I was in elementary school, those were the five senses I learned from my teachers and textbooks. Until recently, I didn’t know there were others. But indeed, there are at least two other…
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.
I recently got new ankle-foot orthoses (AFOs). After losing a significant amount of weight over the years — in part because my AFOs allowed me to walk more — my previous pair no longer fit. The whole process went as well as I could have hoped. However, it brought to…

For much of my life, I avoided talking about Charcot-Marie-Tooth disease (CMT) and how it affects me. I didn’t mention it to the personal trainers I worked with, and most of my teachers and college friends were unaware I had it. I even went so far as to perpetuate…
Roger Ebert, the late film critic, said many things about the long careers of actors Robert De Niro and Al Pacino. But one particular observation of his has stuck with me over the years. In his review of “Heat,” the 1995 crime drama directed by Michael…
A woman walks into a coffee shop, orders a coffee, and looks around for the man she’s agreed to meet — her date. When she spots him waving at her from a table he’s found for them, she starts walking toward him. As she walks, it becomes clear she doesn’t…
I imagine most have heard the phrase “the truth will set you free.” I’ve heard some folks apply these words as general advice against spreading lies. Others appreciate the Christian roots of the phrase. I once even heard a person use the quote in the context of sales…
I don’t plan to ever discourage anyone from making New Year’s resolutions. But I also like to think I’m not the only one who, at one point or another, had an aspiration to get fit and set it as some kind of nebulous goal to be accomplished by the end…
On Halloween evening, I sat outside on a beach chair with a tub of candy in front of me. It had been a long time since I last handed out Halloween candy to the neighborhood kids. The past few years, of course, were disrupted by the pandemic. But this year,…
How do those of us with Charcot-Marie-Tooth disease (CMT) communicate how it affects us and explain what it’s like to be a CMTer? As someone who has fairly mild CMT symptoms, I’ve described the disease as a kind of genetic clumsiness. However, I always knew that never…
I want to love my body, but that’s not always easy to do. Charcot-Marie-Tooth (CMT) disease has physically changed me. Sometimes it’s hard not to feel wistful when I imagine what life would be like if my body were completely different. In my darkest moods, I might even…
Can Charcot-Marie-Tooth disease (CMT) be a gift? Many in our community have pondered this question, and I’ve written about it before. But I’ve been thinking about the idea again after my sister brought it up while we were visiting our parents in Ohio recently. My sister…
I rarely have opportunities to talk about disability narratives while working as an assistant for my local public library system. Typically, when I talk books with patrons, we discuss the latest bestsellers, young adult fantasy series, or author gossip. However, with the support of my co-workers at my local library…
It’s definitely not a universal truth that every person with Charcot-Marie-Tooth disease (CMT) has negative associations with athletics and grade school gym class. However, because many of us with CMT have limited mobility and weak ankles and hands, we tend not to excel in many sports or gym…
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