The CMT Catalyst
I wouldn’t be doing this if it weren’t for CMT.
What’s CMT? Well, it stands for Charcot-Marie-Tooth, which doesn’t explain anything other than a jumble of names: It sounds like a law firm or a dentist’s office! I think this is part of a problem of understanding, because with this obscure name people must jump through hoops to learn more about CMT.
So let’s get down to it (this definition is pulled from CMTRF):
Charcot-Marie-Tooth disease, or CMT, is a progressive, degenerative disease involving the peripheral nerves that branch out from the brain and spinal cord to other parts of the body, including the arms, hands, legs and feet. CMT was discovered in 1886 by doctors — Jean-Martin Charcot, Pierre Marie, and Howard Henry Tooth— for whom the disorder was named.
Typically, the brain and nerves are constantly communicating with each other. But with CMT, the motor nerves (the nerves that control our muscles) and sensory nerves (the nerves that carry sensory information like pain and temperature to the brain) don’t work properly. They have trouble sending signals to and from the brain. This results in numbness, sensory loss, muscle weakness/atrophy and nerve degeneration. Over time, the muscles weaken and deteriorate.
Symptoms may begin as early as birth or during adulthood, and they become gradually worse over time. There are currently no treatments or cures for CMT.
There are many types of CMT. And did you know? CMT affects 1 in 2,500 people in the Untied States. It is almost exclusively inherited (however, there are spontaneous cases of gene mutations).
My Personal Experience with CMT
My personal experience with CMT has been a lifelong story. My mother has CMT, so does her mother (my grandmother) and beyond up the family history line. I was often warned about the possibility that I may have CMT as a child: that heads-up (while likely well-intentioned) absolutely scared me to bits. I felt like CMT was a monster looming in my psyche, waiting to strike and ruin my life. And witnessing what it did to my own Mom certainly affected me a lot growing up.
From my perspective, my Mom experiences a lot of denial around her diagnosis. She lost her hearing and mobility slowly over decades - and spent years wishing to reverse its affects to no avail. While she got support with braces, walkers, and a cochlear implant, it seemed like it wasn’t enough for her to live a fulfilling life the way she wanted. Witnessing her experience in that way was upsetting, and I did what I could to be there for her.
Eventually, though, in my 20s, I realized I’d need to find out for myself if I did (or did not) have CMT. In my family history, CMT has an adult onset arrival. There were some things that seemed like they may add up to CMT, but I couldn’t be sure…so I began my “Diagnosis Quest!”, a series of doctor visits and tests that took roughly a year to follow through on.
One day, I hope to write more about this experience.
It turned out I also inherited CMT. And of my siblings (there’s a 50/50 chance of passing it along in my family) I was the only one how got the CMT calling card.
Finding out for sure that I had CMT by my late 20s was…well, perhaps I suppressed how I felt about that because I can’t really say. I think I was just glad to have the true information. To know, for certain, that yes - I have CMT.
I do remember thinking (and still being in this thought process now) that I wanted to look at it from a different perspective than what I’d seen modeled in my childhood. I didn’t want to deny it; instead I wanted to record it. So finding out I had CMT in my genes (that it’s built into my DNA) before any symptoms began empowered me to start collecting data. I started hearing tests well before I actually lost any hearing. I started visiting neurologists and other specialists well before things took any turns.
And all along as I started collecting baseline data, I wondered what it may be like when I actually started to experience CMT symptoms. There were about 2 to 3 years of maintenance visits and data before I started to notice subtle changes in life.
One day, I hope to write about this shift in realization. The Sounds does start it.
