Sometimes, change can be a good thing.
Other times, it’s met with resistance – particularly if it means admitting things can’t go back to the way they used to be.
In recent weeks, I’ve been able to share thoughts about my journey with Charcot-Marie-Tooth Disease, a degenerative form of neuropathy with which I was diagnosed last year. This condition often results in balance problems, nerve pain and other issues over time.
At the same time, it’s helped me to reflect on a number of changes in my life – two of which I want to address here.
I mentioned in a previous column that I went through physical therapy to deal with CMT. Not long after I began that process, my therapist advocated looking into a type of leg braces known as ankle-foot orthoses, or AFOs.
At first, I bristled at the thought because I was under the misguided impression that I didn’t need them. After all, I only became aware of my condition last year. Surely, my situation wasn’t that serious, right?
Wrong.
Within a couple weeks, I was evaluated for AFOs. As it turned out, I needed them because of the high arches in my feet, as well as the effect CMT has on my walking and my balance. A technician then fitted me for my braces by creating a mold of my feet and legs.
My legs were covered in what looked like casts extending from my toes, nearly all the way to my knees. Suddenly, I knew life would be different from then on.
Around this same time, I began experiencing unbearable pain in my legs and feet when walking long distances, or shopping in a large store for any length of time without my AFOs on. It was suggested to me that, in such situations, I could use a motorized cart to get around.
Once again, I initially balked at the the idea. Perhaps I was a bit
self-conscious at that point, worrying about people looking at me funny in the store. I just didn’t want to be seen as taking advantage of something that was meant for people who truly needed it.
A trip to a local Walmart changed my mindset. I wasn’t wearing my AFOs at the time, but I wasn’t planning on being there long. So, I figured I’d get everything done as quickly as possible and go home.
Within half an hour of walking the aisles, my leg was screaming in pain while dragging behind the rest of my body. At that point, I realized that I was, in fact, one of “those people” who needed one of those carts.
This epiphany was a bit liberating, in a way. Since then, I’ve become less self-conscious, know- ing that I’m doing what I need to do in order to take care of myself.
Along the way, I’ve also discovered that most of the time, people aren’t judging me or looking at me funny when I use a motorized cart. They’re living their lives, doing what they need to do, and I’m free to do the same.
I don’t care if someone sees me walking around in my AFOs. When I’m doing that, it’s not a plea for sympathy. It’s one way I can manage the pain that comes with CMT.
I’ve also stopped worrying about what someone else might think when I’m riding around in a motorized cart. I’d rather use one of those and get out of the store more quickly – and in less pain – than let my pride dictate how I cope with my condition.
CMT is a part of my life now, and I don’t have to apologize for what comes with it.
Yes, some days will be worse than others. But, I’m not going to let it happen to me without a fight.
