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CMT - Charcot-Marie-Tooth Channel

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Growing Up With CMT
By Laura Moquin
(Page 1 of 4)
 

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.

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