My memories of physicians first explaining the details of Charcot-Marie-Tooth (CMT) to me are hazy at best. I remember something about nerves, and of messages having difficulty going from my brain to my extremities.
I remember not feeling weak. But I also remember that the folks poking me and taking measurements considered my balance lacking, my hand dexterity below average, and my reflexes sometimes barely perceptible.
More than 20 years later, and despite knowing that my CMT has progressed, I find it difficult to describe CMT’s effect on me. I feel unqualified to discuss more than the basics of CMT. And when I think about my everyday struggles, I don’t know whether it’s me or my CMT. Medical descriptions of what’s going on in my body don’t translate to my real-life experiences.
A fellow CMT-er and I joked about this recently. We don’t have a baseline other than our younger selves. We have bodies that experts say are lacking, but we don’t know what it’s like to be able-bodied. We’ve never been anyone else.
Some would say I’m barely symptomatic. I’ve struggled with foot drop, and I’ve spent much of my life in ankle-foot orthoses. But when people meet me, most assume my gait is because I hurt my ankle or had an accident. They never guess CMT.
I didn’t have an accident or hurt my ankle. And I’m not just clumsy — at least that’s what I’m told. CMT brings a special brand of clumsiness. But what does that mean?
I wonder if the doubts are part of the CMT experience. “Is this because I have CMT, or am I just out of shape?” “Am I just complaining?” “What about this? Is this a CMT thing?” “And that?”
I have such thoughts. As I walked down the stairs one morning, I could feel my knees not being as responsive as I’d like. I wanted to tell my knee, “OK, this is when you bend so my other leg can reach the next step.”
Most days, I run up and down the stairs without a second thought. Other days, I have to make a conscious effort. And that was one such day.
When I reached the bottom of the stairs, I thought, “Was that a CMT thing?” I didn’t drink the night before. I didn’t have a hangover. Maybe I slept wrong.
When I was younger, I took the stairs one at a time. Dadump. Dadump.” Why did I do that. Was it a CMT thing?
When I hyperextended a tendon in my knee trying to jump over a small ledge in college, did my CMT contribute to my inability to clear the ledge? When I trip over my laptop power cables, is that also CMT?
Is it a CMT thing when I open my car door and bump my head?
I could go on.
CMT sometimes affects everything while being mysterious in how it reveals itself. Every day is a new experiment with more disappointing results.
I guess all we can do as CMT-ers is to remain as active as possible and seek advice from medical professionals. And we endure.
Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.