Imperfect Genes: Life With A Rare Disease | The Odyssey Online
Start writing a post
Health and Wellness

Imperfect Genes: Life With A Rare Disease

Living with Charcot-Marie-Tooth

343
Imperfect Genes: Life With A Rare Disease
CashmereMiles.com

Sometimes, it’s a lot easier to hide things than to open up about them. Maybe you don’t want people to think of you differently, or maybe you just don’t want to accept it yourself. I’m not too sure that this is always the best way. Maybe it’s the cliché of college -- “new beginnings” -- talking, but I think I’m ready for a challenge.

Let me tell you about a disease called Charcot-Marie-Tooth, or CMT.

It’s basically invisible, unless you know what you’re looking for. No, it is not a dental disease, nor does it have anything to do with Country Music Television. It’s a neurological degenerative nerve disease. It primarily effects the extremities, causing muscle weakness, loss of muscle, poor coordination, loss of sensation, and balance issues. As it progresses, it makes it hard to walk. It’s genetic, and my mom happened to inherit it from her father. There is a 50/50 chance that you will pass it on to your kids. I have one sister, and guess who drew the short stick?

I was diagnosed about three years ago, although we always knew that I was the one who inherited the curse. I fell a lot when I was younger, which was a common symptom. But, hey, at least I can say that I have a clinical excuse for being a total klutz. I was the laughingstock among the second grade soccer moms because, apparently, I face-planted a lot.

I, honestly, have no recollection of this. I thought I was going to be the next Mia Hamm. Despite my lack of embarrassment, my mom wanted to protect me, so she took me out of sports. Luckily, she also passed her stubbornness on to me, so I didn’t give up that easily.

I joined tennis in high school, picked up running, and started going on hikes with my friends. My philosophy has always been somewhere along the lines of, “Well, if my muscles are slowly deteriorating, why not use them while I still can?” I’ve learned my limitations this way, or rather, that I didn’t have nearly as many limitations as a lot of people with my disease. Things weren’t easy, but they were possible. Most of the time.

My disease started to pick up in high school. It affects my balance and my depth perception. It’s hard for me to walk on uneven ground, especially in the dark. I have to hold onto people for support, sometimes. If I close my eyes while standing, I’ll probably fall. My feet have high arches and muscle loss, which makes them hurt a lot when I walk on them too much.I’m at risk of hurting myself without noticing because I’m losing senses in my extremities. I often burn myself on the oven because the feeling is delayed, and once I sprained my ankle without even noticing. I get awful cramps in my legs. They’re more frequent when I’m stressed, and college tends to do that to you.

It’s hard to admit when I can’t do something. Maybe it’s just because I’m stubborn, or maybe everyone struggles with this. When I can’t do something, I usually make excuses rather than admitting it’s because I have a disease, since most people don’t know about it. I’ve had to say no to ice-skating with friends because it’s virtually impossible with my lack of balance and weak muscles in my feet and ankles.

I forced myself to quit tennis this year after my roommate saw me collapse on our floor after practice because of the most painful cramp I’ve ever had. I didn’t tell my coach, or most of my friends, the real reason I quit.

I don’t talk about my disease much. I don’t want people to pity me, or think that I’m any less capable of doing things. But, honestly, hiding something that is such a big part of your life is unhealthy. I think this applies to more than just some rare disease. I strongly believe that we should all learn to be a bit more accepting of who we are because when you allow yourself to be honest, you might just learn something from it. CMT has taught me humility, in accepting that I can’t do everything. It’s also taught me to appreciate the things that I can do. I don’t take moments for granted, like crossing the finish line of my first 5K, or looking down at the mountain I just climbed.

Maybe I’ve pushed myself too hard, sometimes, but that’s the only way you’ll find out just how far you can go. And trust me, it’s further than you think.

Report this Content
This article has not been reviewed by Odyssey HQ and solely reflects the ideas and opinions of the creator.
Relationships

10 Facts All People In A Large Family Can Confirm During The Holiday Season

The holiday season can be the best and most stressful time of the year, especially when more people are involved.

432
kids jumping

The holidays are full of lights, sweets, sweaters, and your favorite movies. There's nothing quite like this period from the beginning of December through January. Christmas, Hanukkah, and New Years. The fun of it all.

I don't know about you but with my large Italian family something is always going on during this season. It can be the most wonderful time of the year while also being the most hectic. These are a few things you know if your family is anything like mine during this time.

Keep Reading...Show less
10 things that happen the second Thanksgiving is over
reference.com

To those who celebrate, you just spent an entire day cooking an elaborate meal with all of your favorite foods. You probably ate your body weight in pumpkin pie and mashed potatoes. What happens now? Oh yea, Christmas. It’s time to take out all of the decorations and Christmas themed things that have been sitting in the attic since last year; it’s time to make a reappearance. So, here are 10 things that happen the second Thanksgiving is over.

Keep Reading...Show less
Adulting

18 Things I Want To Do Now That I'm 18

I'm technically an adult, so I'm legally required to live a little, right?

3919
Happy Birthday Cake

For the entirety of my high school career, I was always seen as the goody-two-shoes. I never got in trouble with a teacher, I kept stellar grades, and when I wasn't doing extracurricular activities, I was at home studying. Even when I did go out, it was usually with a bunch of fellow band geeks. The night would end before 11:00 PM and the only controversial activity would be a fight based on who unfairly won a round of Apples-to-Apples when someone else clearly had a better card (I promise I'm not still holding a grudge).

Now that I'm officially an adult, I want to pursue some new things. I want to experience life in a way that I never allowed myself to do prior to entering college. These are the years that I'm supposed to embark on a journey of self-discovery, so what better way to do that than to create a bucket list?

Keep Reading...Show less
Featured

10 Life Lessons from Christmas Classics

The holiday classics that shaped my life

2399
10 Life Lessons from Christmas Classics
Flickr

The holiday season is full of stress, debt, and forced conversation. While we rush through the month of December, it's important to take a step back and enjoy the moments before they're gone. Most families love to watch Christmas movies, but these beloved films provide more than entertainment. Here are 10 life lessons that I've learned from the holiday classics we watch every year.

Keep Reading...Show less
Featured

15 Mind-Bending Riddles

Hopefully they will make you laugh.

201746
 Ilistrated image of the planet and images of questions
StableDiffusion

I've been super busy lately with school work, studying, etc. Besides the fact that I do nothing but AP chemistry and AP economics, I constantly think of stupid questions that are almost impossible to answer. So, maybe you could answer them for me, and if not then we can both wonder what the answers to these 15 questions could be.

Keep Reading...Show less

Subscribe to Our Newsletter

Facebook Comments