Charcot-Marie-Tooth (CMT) is a hereditary, genetic, neurological disorder that causes sensory and motor function loss. Basically, my genetic code has a flaw in it that allows blockage to build up in my nerves (yes, directly in my nerves, I had no idea that could happen). The result is a disconnect between my brain and my muscles because my nerves can’t pass on signals. There are multiple ways that CMT can be inherited, and some types are worse than others, but all of them are incurable.
In addition to CMT, I also have anemia, scoliosis, pectus carinatum, and costochondritis. Having only one of those diseases can be problematic; having all of them at once is dreadful. Fatigue is a symptom of both anemia and CMT. Chronic pain is a symptom of scoliosis, CMT, and costochondritis. Physical deformities are a symptom of scoliosis, pectus carinatum, and CMT.
Just in case you don’t know: scoliosis is a curvature of the spine. Sometimes adolescents will wear a brace to prevent the curve from getting worse. They diagnosed mine too late.
Pectus carinatum is a deformity of the chest that occurs when the sternum bone sticks out. Most doctors think it doesn’t causes any problems. They’re wrong. One of the possible side effects is costochondritis, which is inflammation of the cartilage around the breast bone. It has no known triggers, but is exasperated by the sternum rubbing where it’s not supposed to and physical activity.
I have always known that I’m not completely healthy. I could never run as far or as fast as the other kids. I fell down the staircases (a lot). I walked into chairs and open cabinet doors (a lot). Whenever I got an upper-respiratory infection I would be sick for weeks (or months). No one ever could figure out why though. I was clumsy, needed to build up my endurance, take more vitamin C, etc. Of course there was nothing really wrong with me. It’s always obvious when kids are seriously sick, right? Sure.
I trip a lot when I’m walking, and it’s not usually a little trip either. Most of the time when people see me trip they reach out to grab me in case my face wants to meet the floor. Kind of scary, that. To help prevent trips and falls, I wear AFOs (ankle foot orthotics), just call them leg braces if that’s easier. Mine are a bright purple, because if I have to have ’em I might as well rock ’em.
To prevent my fatigue from getting too excessive, I also ride a powered scooter around campus. It’s awesome, except when the hallways are too narrow or the elevators take too long or people don’t actually take the time to observe their surroundings and stand right in front of the handicap button for the door and don’t hear me when I ask them very politely to move.
Sometimes people ask me if I’m okay because I look like I’m in pain. No, duh. Really?
Sometimes people ask me when I get the braces off as though it’s a cast or something. Um, when these are worn out and I need a new pair.
I used to be really good at ballet. Now I can’t even point my toes properly.
The other day I got asked why I used a powered scooter if I wasn’t a cripple. I just stared at the guy and waited for him to actually look at my legs. It took him about thirty seconds to observe the bright, purple, very noticeable leg braces.
That’s probably enough depressing stuff for one day. If you’re like me, some days you hate even thinking about all that medical stuff that’s going on in your life because it hurts enough to make a saint swear and it’s all just too much. Other days you want everyone to know all about it so they can maybe understand, and even if they don’t understand they can at least try to somehow support you. And then there are the days when you are just mucking along because you have a chronic disease and that’s just the way life is. No big deal, except when it is.
Just remember: you can do this.
No, really, you can.
You may need extra down time every day to have enough energy to function. You may not get out much because it’s usually not worth the effort. Your social life may consist of doctor’s visits and the Internet, and that’s okay. You may be functioning just fine and all you need is an extra little boost every day. Either way, you’re still living your life and you’re still pushing through.
Sometimes it all becomes too much (usually on those days that I got only five hours of sleep instead of my desperately needed nine) and I just curl up in bed and cry. And that’s okay. There’s nothing wrong with acknowledging that hopeless feeling that you will always have this disease unless by some miracle those research studies find a cure in your lifetime. Just remember that you can get through this. You can live your life without letting that chronic illness define you.
CMT is a part of who I am, because I would not be me without CMT. But I do not let it control my life.
A lot of people have prayed that I would be miraculously cured of my various conditions. I’ve gotten to the point where I never ask people to pray for healing, only for strength to get through the day. What many of them do not realize is having strength to get through the day without having a complete meltdown is a miracle in and of itself. Besides, what is the greater testimony: being cured of a disease that no one knows about or continuing to live my life without giving up on God?
And finally, because I am a nerd:
“Never give up. Never surrender.”
“Just keep swimming.”
“Keep moving forward.”
“We are between the paws of the true Aslan.”
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