Growing Up With CMT

A lie can cost you reputation, respect, relationships... A lie can come from boredom or a lie can be forced from circumstance. Lies pop in and out of our mouths and minds at an alarming rate, but it only takes one lie to haunt you forever.

I was ten years old when I was finally diagnosed with CMT. It had been years of misdiagnosis that finally led my parents to an orthopedic surgeon who diagnosed me with this disorder. I was relieved they could finally cure me because that's obviously the thought process I had. At long last the doctors knew what was wrong and now they could make it better make me better. I was wrong.

CMT is a progressive disorder. Now, at 25 years old, I can still remember my doctor answering my ten year old question; "When do I get better?" with a stern face. "You won't get better, Laura," he said "this is a disease. You are going to have this for the rest of your life."

There, in the cold white doctor's office, I cried for hours. There, a piece of my childhood innocence died. There I began to perfect the art of the lie."Laura, come play!" I can't- I'm busy. "Laura, come run with us!" I don't want to- I have more important things to do. "Laura, come to this concert with us." No thanks, I hurt my knee playing volleyball. "Laura, wear these shoes." I don't like heels.

Lies, lies, lies...

A few years later, I started high school determined to be normal. I wanted to be smart, pretty, and popular. I didn't want to be the girl with braces on her legs, the girl who can't participate in gym class, the girl they don't know what's wrong with. I set forth with my plan. I went to the gym every day after school building my muscles; I basically lived on a diet fit for a pet rabbit. I highlighted my hair with blonde streaks and got my belly button pierced. My mother gave up fighting with me about attending weekly mass. I said all the right things... but deep down, I was exhausted.

The thing about building a house of cards is that eventually it's going to fall down...

Junior year my CMT caught up to me. My toes had curled up to the point where every shoe gave me immense pain. I had to have another operation. Afterwards, I returned to school on crutches, with an enormous cast, on pain medication, simply tired.

My classmates couldn't believe I had missed the keg party last Friday. "Last Friday I had an operation," was my reply. "I was totally waiting for you to show up on crutches," I can still remember the keg party hostess saying.

Everything was slipping away... missing a week of school left me frustrated and confused. The boy I liked had moved on to someone else. The cast was so huge and the metal bars inside my toes throbbed. I was in pain, on medication, but kept a smile on my face. I joked about my misfortune and counted the days until I wouldn't be on crutches.

The worst part was that no one knew what actually happened. My teachers, principle, class mates all assumed that I broke my leg. It makes complete sense if one of your 16 year old students shows up on Monday in a cast that you assume she broke her leg and move on.

It felt different than when I had my fifth grade left foot tendon transfer operation, where my eighteen other classmates all knew there was something wrong with me. In high school, I didn't have my mom telling my teachers exactly what was wrong. This time, I didn't need my mom telling everyone my business. When she asked if I spoke to my teachers, I lied. I almost told a guidance counselor once, but I felt the tears building up in my eyes and didn't want anyone at my high school to think that Perfect Laura could cry. The Student Council President of her class shouldn't be in the guidance office crying.

When asked directly I would explain that I had corrective surgery on a foot problem, but as I mentioned earlier, most people moved forward on their assumption. Truthfully, I reveled in the fact that they all thought of me as normal enough to just break my leg playing sports over the weekend.

I had so many flimsy cards stacked up that one was bound to slip...

The first was my grades. I couldn't concentrate on school anymore. I was simply so tired. The medication made me sleepy; I put all my energy into getting through the day with a smile on my face. My grades went down to B's and, I got a note about the possibility of losing my full scholarship to my private school. I needed to get my grades up. I was desperate. I tried but my brain felt like a brick wall that repelled new information. Perfect Laura, who could remember an entire chapter of text now simply couldn't retain.

I couldn't go to my parents because I didn't know what to say. I was confused. The principal finally approached me about my grades. "You're about to lose your scholarship," she said flatly. I racked my brain for anything, something to say... Nothing came, so I simply promised to try harder.

A few months passed by and things felt a little better, but my grades did not bounce back. My 99 average had slipped down to an 85. My parents thought my AP classes were too tough. No one understood what was happening, not even me.

Finally, a mandatory meeting with the principal came. I sat outside her office wondering what I could say. I couldn't lose my scholarship because then my parents' would know something was really wrong. I couldn't lose my scholarship because everyone had expectations I should meet. I simply couldn't. How could I make her understand? I could imagine myself saying... oh principal, I have this disease I don't really understand.

A few months ago I had this really painful surgery. I have metal bars through my toes and it's all I can think about. My arms are constantly burning from these crutches. I don't really know if the doctors know what's wrong with me it's really scary and I'm not going to get better. As simple as those words come out now, it was incomprehensible to me that she could understand. Those words were the farthest thing from my mind. I needed an excuse. I was desperate. I tried to think of something she would be able to relate to.

"I had this operation," I said not able to make eye contact.

"Laura, I understand but it's been a few months and you should be feeling better."

That was the problem. Most people thought a broken foot or leg would get better... but I couldn't. I wouldn't get better.

"They can't make it better, they don't really know what's wrong..." my brain was racing for something to say, "I have weird growths on my foot. They think I might have... cancer."

When the words came from my mouth I knew it was a lie. It was a total and utter lie. I felt sick to my stomach. It was just that I knew she would understand "cancer," not CMT.

Why am I pretending that I might have cancer? My brain was spinning... Why would I do that? I hated myself, but it got done what I needed. She gave me some more time. My lie bought me another semester.

It turns out one semester wasn't good enough, but I truly learned a lesson the hard way. I would go to bed thinking about that lie, I still wake up thinking about that lie, I've prayed for forgiveness. I hated who I was reduced to. Recently, I've began to realize that it's okay. I made a wrong choice, but I'm truly sorry and I can't let my lie haunt me anymore.

I've learned that when you are 16 years old and backed into a corner, you'll say what you need to say. That experience has taught me that it's vital to my survival to be okay with my disorder. I don't have to explain myself to anybody.

When I can't do things now, I no longer see the need to make up an elaborate lie. A simple "no, I can't do that; I have a muscle disorder," will do. Having CMT has taught me many things. At first, it taught me to be a good liar, but eventually taught me to be compassionate and to be a better person.

I guess I'm writing this as an act of contrition... as passing down a hard lesson learned. The only way to make others okay with CMT is to raise awareness and no one can do that if they are not accepting of what they have. Yes, it can be a terrible disease, but I am grateful every day for the lessons it has taught me. I am grateful for my CMT because it has helped me to become the person I am, and I have dedicated my life to helping others feel like they don't have to lie. It's okay to be who you are, CMT and all.