On My Own Two by Young Lee

light, being present, exercise, grandmother, wariness

Young is a writer with CMT 1A 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 studies. 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 BioNews writer, Kevin Schaefer, encouraged him to explore and learn more about this very important aspect of his life.

Learning to Appreciate My Body Rather Than Resent It

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…

I’m Learning to Appreciate the Slower Pace of CMT Life

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…

Finding Joy and Self-love Through Movement

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…

The Importance of Fostering Good Patient-doctor Relationships

Much of what we know about Charcot-Marie-Tooth disease (CMT), and often take for granted, is relatively new information. Many of the breakthroughs in our understanding of treatments, genetic subtypes, orthotics, and surgery have come about in the last 40 years. But there’s still a lot we don’t know.

Transforming Frustration With CMT Into Learning

There is a common game that children play, although I’m not aware of an official name for it. The game is pretty simple and involves two players. Player one presents a fist to player two and holds it as tightly as possible. Player two then tries to pry each finger…

Let’s Work Toward a Future Where CMT Awareness Isn’t Rare

When those of us with Charcot-Marie-Tooth disease (CMT) bring up our condition, a common response is, “So how does that affect your teeth?” It’s a frustrating misconception, and we may find ourselves wondering if people with other rare diseases have to deal with the same lack of understanding. But when…

What Living With Hope Looks Like for Me

I’m sure most CMTers will agree that Charcot-Marie-Tooth disease (CMT) often sucks. It can feel like there’s nothing redeemable about living with this chronic condition. CMT wears away at our physical strength and stability, leaving us accident-prone. It alters the body in unexpected and undesirable ways. It drains our…

‘No Cure’ Doesn’t Mean ‘No Hope’

I have the words “Charcot-Marie-Tooth” set as one of my Google alerts. As a result, I’ve come across many articles about CMT and CMTers. I love this. For me, it’s a great way to stay informed about the CMT community and hear about some of the…

I’m Learning to Be More Open About My Needs

I made my friend from childhood wait while I put on my ankle-foot orthoses (AFOs). We had just finished eating our eggs and toast at a fancy breakfast place, but we hadn’t seen each other in three years, so we still had some catching up to do. My friend…