Living with Charcot-Marie-Tooth: Embracing Imperfect Genes | The Odyssey Online
Start writing a post
Health and Wellness

Imperfect Genes: Life With A Rare Disease

Living with Charcot-Marie-Tooth

360
hope in our genes
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.

Charcot-Marie-Tooth

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.

CMT affected foot

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
Student Life

A Few Thoughts Every College Freshman Has

The transition into adulthood is never easy

18308
Mays Island
Courtney Jones

Today I started my third week of college at Minnesota State Moorhead. I have survived welcome week, finding my classes on the first day, and being an awkward loner in the dining hall. Even though I have yet to be here for a month, I have already experienced many thoughts and problems that only a new college student can relate to.

Keep Reading...Show less
Students walking on a sunny college campus with trees and buildings.

"Make sure to get involved when you're in college!"

We've all heard some variation of this phrase, whether it came from parents, other family members, friends, RAs, or college-related articles. And, like many clichés, it's true for the most part. Getting involved during your college years can help you make friends, build your resume, and feel connected to your campus. However, these commitments can get stressful if you're dealing with personal issues, need to work, or aren't sure how to balance classes and everything else going on during the semester.

Keep Reading...Show less
Relationships

9 Reasons Why Friends Are Essential In College

College without friends is like peanut butter without jelly.

7793
Bridgaline Liberati and friends
Bridgaline Liberati

In college, one of the essential things to have is friends. Yes, textbooks, a laptop, and other school supplies are important but friends are essential. Friends are that support system everybody needs. The more friends you have the better the support system you have. But you also have someone to share experiences with. And don’t settle for just one or two friends because 8 out of 10 times they are busy and you are studying all alone. Or they have other friend groups that do not include you. Don’t settle for just one or two friends; make as many friends as you can. After the first couple of weeks of college, most friend groups are set and you may be without friends.

Keep Reading...Show less
Lifestyle

The Power of Dressing Up

Why it pays to leave the hoodie at home.

5699
sneakers and heels
Sister | Brother Style - Word Press

For a moment your world is spinning. The phone alarm has just scared you awake and you’re flooded by daunting thoughts of the day ahead. You have three assignments due and little time to work on them because of your job. You’re running late because you’ve hit snooze one to many times after yesterday’s long hours. You dizzily reach for a hoodie, craving its comfort, and rush for a speedy exit, praying you will have time to pick up coffee. Does this sound familiar?

Keep Reading...Show less
Entertainment

11 Signs You Live At The Library As Told by 'Parks And Recreation'

A few signs that you may live in the library whether you'd like to admit it or not.

4946
brown wooden book shelves with books

Finals week is upon us. It is a magical time of year during which college students everywhere flock to the library in attempt to learn a semester's worth of knowledge in only a week. For some students, it's their first time in the library all semester, maybe ever. Others have slaved away many nights under the fluorescent lights, and are slightly annoyed to find their study space being invaded by amateurs. While these newbies wander aimlessly around the first floor, hopelessly trying to find a table, the OGs of the library are already on the third floor long tables deep into their studies. Here is a few signs that you may live in the library, whether you'd like to admit it or not.

Keep Reading...Show less

Subscribe to Our Newsletter

Facebook Comments