I Have a Confession

There is something a little unsettling seeing an adult fall randomly. It is sort of expected with kids. Though it can be concerning, it is a part of growing up. Falling and getting back up. Both literally and figuratively. However, when you see an adult fall for no obvious reason a bit of judgement comes into play. How much have they had to drink? It’s not even 7am, for fuck’s sake! 

 

The other day I tripped over a curb. The terrifying thing was that I had Roo in the baby carrier at the time. Through some crazy momma-reflexes she was unharmed, though the same cannot be said for my knees. It doesn’t matter how often I fall it still fucking hurts. It is still embarrassing as all get out. And I’m usually stone sober when I fall.

 

This is why I’m called Klutzy.  I have something called Charcot Marie Tooth disease. Throughout my life it has been referred to as a neuromuscular dystrophy, but I believe the most current description that it is a peripheral neuropathy. Although “Tooth” is in the name, it has nothing to do with my teeth. The name comes from the three doctors that first discovered and studied the disease. The disease presents in many different ways and even though it is hereditary, can vary widely among family members. For me it mostly affects my feet, ankles, and balance. I have a certain amount of numbness in all my extremities, and slight tremors in my hands. I have been very blessed by having a mild case. Everyone who has been diagnosed with CMT in my family before me has had to have major reconstructive surgeries to correct their feet and ankles, while I have not. My Grandmother was known as the “little crippled girl” before she had her surgeries to correct the disease. There are stronger more aggressive forms of CMT that can completely debilitate a person from deformed limbs, immense pain, tremors, or immobility. The nature of CMT is degenerative. It is just a matter of time before the disease progresses. One day, I, too, will be under the knife. Before I am using braces. Before I am in need of a walker.


(Check out my crazy feet!)

Last year I was working hard on my fitness. One of my main motivators for getting fit was my CMT. I see my frail grandmother barely able to walk across a room in her house. She does not leave her house often because the risk of falling is just too great. I see my aunt struggle to walk across the yard. As she says, “I don’t do so well in nature anymore”. I saw the scars on dad’s feet and ankles from his surgeries. I see myself in them. I know these things are going to be part of my life. This is my future. So When I started working out regularly I felt stronger than I had ever felt in my life. It strengthened my legs and ankles so that I was not in constant danger of rolling my ankle when walking. Hiking is my favorite outdoor exercise. Often my family members were brought to mini anxiety attacks because I constantly looked like I was about to fall due to my weak ankles and frequent tripping due to foot drop. 

I have moved closer to my grandmother and aunt, so seeing them more often has got me thinking about my CMT a lot more. I hadn’t often thought about it because it is simply part of my life. Clumsiness and cold feet are things that I deal with constantly. I used to make excuses for my lack of fitness because of the disease. I used to be resentful of the very suggestion of physical sports or exercising. However, after seeing how strong I have gotten with exercising, I am much more open to trying things that I would have never wanted to do in a million years. I am even open to the idea of going for a run (though, will never be my go-to). I have always hated the very thought of running. As a kid that was the biggest and easiest way for the bullies at school to torment me. I was told by my father (I love him to pieces, and he had CMT in a more aggressive form than I do, so I do not hold this against him) that I could not run. That I was not able to run. He did not want to see the pain that the bullying caused me so would offer to have the school change the PE requirements for me. I chose to not have the rules changed for me. I didn’t want to be different. 

After 30 years of extremely high arches and weak ankles, my feet are starting to wave a white flag of defeat. I won’t let that happen. It is time to embrace my mobility for as long as I am able. It is time to take care of myself . 

Still, I am Klutzy, and I fall. A lot.

 

LEARN MORE HERE ABOUT CHARCOT MARIE TOOTH DISEASE!

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