This is the second in an ongoing series of blogs about a progressive inherited neural muscular disease that I have: CMT, Charcot Marie Tooth Disease. As I wrote in my last blog entry, CMT is affects 1 in 2500 people in the United States with a wide range of individual severity, and an even wider range of specific identifiable symptoms.
Probably the most common symptom of CMT is a funny walking gait. “Foot Drop” is common where a person can’t properly lift the front of their foot while walking. CMT shows up most often in the feet and ankles first. In my case when I was elementary school age I was not athletic, I had a bad sense of balance, and I couldn’t run well or walk with grace. Of course I had no idea why these things were present, so I just figured I didn’t try hard enough or I wasn’t the best at sports and athletics. In Junior High and High School I certainly wasn’t one of the popular kids because I couldn’t be the foot ball team quarterback or beat up any of the tough kids who like to fight. Therefore I was relegated to the the small clicque of kids who were nerds and misfits. Interestingly this was my “gift” from CMT, even though at the time I didn’t see it.
Not doing well at athletic activities or fitting in well with the popular crowd pushed me to excel at academic endeavors. I was top of the class in math, science, electronic activities, and especially writing. My school counselors all chose my career to be an author of books and manuals. That was where every evaluative test I took flagged me at top of the class. Of course I was not diagnosed with CMT until I was 40 years old. And when I was 18 there was a war going on: Viet Nam. Although I was married, had a son, and lived in a college town with a very high lottery number for the draft, I learned quite by accident that the draft board was mailing me the order to go for my military draft physical. So I ran to my local Army and Air Force National Guard bases to see if they would enlist me before I was drafted. Despite having CMT I passed the physical quite easily. And my exceptional academic abilities waived me out of the lengthy waiting list, and I was enlisted in the Air National Guard hours before opening my draft order. I did good.
Nonetheless, military is very physical and requires activities someone with CMT normally cannot perform. But, another gift CMT has given me is my stubbornness. Even before I found out I had CMT I was quite stubborn. I learned to expect a lot of myself physically even though it would be little or nothing by standards set for healthy humans. But I ran, fought, did the obstacle course, and passed the rather rigorous wartime boot camp regimen ultimately completing 8 years of military service in the national guard where only 6 years were required. All the while I had CMT and didn’t know it, other than I did know I couldn’t walk or run like anyone else.
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After that my career in broadcast radio engineering found me building radio towers, including climbing them and maintaining the grounds. These were all things someone with CMT generally cannot do. As a matter of fact when I was finally diagnosed with CMT when I was 40 the first thing I was told by the doctors is that I couldn’t climb towers anymore. The next week I went out and changed the tower light-bulbs on a 500 foot tower just because I was told it was something I couldn’t do with CMT.
That sums up my early approach to being diagnosed with a funny sounding disease no one had ever heard of, a disease that affected me noticeably in ways I could hide. I decided to ignore it when possible and fight it when it invited me to. If I was told I couldn’t do something because of CMT, I did it. If I found my hands and feet didn’t cooperate with certain tasks I forced them to comply or found ways to work around so no one would know. One of my very real fears at that time, as I was climbing the corporate ladder, was that if my employer found out about my progressing disability it may hurt my promotion and advancement. This was not something I was going to let CMT rob from me at the peak of my career.
Another belief I have, whether grounded in fact or just a superstition on my part, is that the best way to go at a disease is to fight it, not embrace it. When I was a child it was cool to have a cast or crutches to get attention for your “owey”. But as I became an adult I noticed that those who embraced crippling diseases, accepting braces and wheelchairs, advertising that they were victims of nature’s cruel plan, somehow made matters worse and let the disease have its way much faster with its victim. It was somehow like giving up – at least to me. I wasn’t about to give up. So I fought, and fought with everything I had.
But tonight’s blog entry is getting long so I need to sign off and write some more next time. In my continuing series I will write about how CMT finally demanded that I not ignore it anymore. As an old man I need to stand up and hold the line. “This far and no more!” Stay tuned…