On My Own Two
— Young Lee

words, help, cooking, dance, pride, uselessYoung 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.

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Columns

Navigating uncertainty while living with a rare disease

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…

Young Lee

Columns

Lessons from a Therapist Friend that Can Be Applied to CMT

Topics such as setting goals and being more mindful have been on my mind recently. And that’s not by coincidence. A few weeks ago, I met with a friend who happens to be a licensed therapist specializing in marriage and family therapy. I had never talked with her about her…

Columns

Lessons from My Grandmother

My family members are traveling from around the country this week to gather for a celebration of my grandmother’s 100th birthday. We’re all excited about the event, and though I’m biased, I think my grandmother is a special woman worthy of a massive celebration. Standing at less than 5 feet…

Columns

When Dealing with CMT Symptoms, It’s OK to Improvise

Among the many symptoms of Charcot-Marie-Tooth disease is a decrease in hand dexterity. This crossed my mind a few months ago while I was filling up on gas, and a young lady drove up to me asking if I could help her open her bottle of Sunkist. As I…

Columns

Pondering Questions of CMT and Identity

A friend and I surprised each other recently. I casually mentioned that I have Charcot-Marie-Tooth (CMT). And she revealed that I had never previously brought up the subject. We have been friends for almost 10 years. In college, we spent many late nights together working on articles for the…

Columns

Leaning on Friends

I don’t particularly like hiking. Steep inclines and unpaved pathways make me nervous. And sometimes it feels like I have pogo sticks instead of feet. I don’t always know which direction my body will propel me. Nevertheless, the hiking trails along the Blue Ridge Parkway are gorgeous. And whenever…

Columns

I’ve Discovered the Importance of the CMT Community

We pulled up chairs so that we could sit closer to each other. She pointed at her shoe, to a place about an inch from the tip. “See, my toes only come up to about here,” she said. “But you know we buy shoes more for the width than the…

Columns

A Thank You to My Old AFOs

In grade school, I used to launch my ankle-foot orthoses (AFOs) from my foot and into the air by twisting my toes as I kicked as high and as hard as I could. I would watch my AFOs spin in the sky before they fell to the ground. The…

Columns

An Introduction to a New CMT Column: ‘On My Own Two,’ by Young Lee

Recently, my father sent me a copy of doctor’s notes he received in 1989. Those familiar with Charcot-Marie-Tooth disease (CMT) would recognize many of the phrases scattered throughout: “chronic weakness in lower extremities” and “increasing grip weakness,” to name a couple. It was when he first learned he had CMT,…