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My story with Friedreich’s Ataxia (3 of 4)

Hello friends!

The last time, I told you how Friedreich’s ataxia sneakily took up residence in my body. But oh, how I did not let him take my life.

My teenage years passed (without an existential crisis…I want to clarify that) and then I grew up (but not that much…I’m just 5 feet tall). At that point in my life, Friedreich’s ataxia was there, but I was kind of in denial. Let me explain, during that period, I was walking, running, jumping but in a very unbalanced way. I was still doing all that and more. Even though I knew that my physical situation at the time was going to deteriorate, I told myself that I was the exception to the rule and that my condition would always remain the same. Then if not, at worst, I was going to deal with it later in my life, in due course.

In short, I continued my dance and horse-riding lessons (yes, I also did horse riding) until I was 16. That year, in March, one day when my mother picked me up from my dance school after I had spent my day there, I remember telling her that I had decided that I wanted to stop, not because I was no longer capable but on the contrary because I still could, and THAT was the memory of the dance that I wanted to keep. I didn’t want to go to the stage where dancing would become a painful activity. I loved dancing more than anything, and by making the decision to stop before my body forced me to, well I can still say today that my love for dancing is unconditional!

Once my “physical activities” stopped, I must admit that my abilities really deteriorated. I always had to have an arm from another person at school to hold onto to move between classes because I had less and less balance. I also had special access to the school elevator so I could walk from floor to floor because going up and down stairs was getting more and more  difficult.


In the spring of my senior year of high school, the principal called me into his office with my parents (I knew I had done nothing wrong, but I was still scared!) to talk about my situation. He asked me to start using a wheelchair to get around because he thought it would be easier for me. He swore to me that the teachers and supervisors of the school would not tolerate anyone commenting on this, if that was what I was afraid of. It was nice of him, but it wasn’t other people’s opinion of me that scared me…it was mine. I simply told him “I started high school here on my 2 feet, I will also finish it on my 2 feet… I am not ready to give up on that idea! “. That closed the case and then everyone moved on to another topic.

One of the most defining moments of my life was at my prom. When we were given our diplomas, we had to go up on the stage to pick them up in turn. Me, my long dress, my high heels, and Friedreich’s ataxia, we decided that we were going to overcome this obstacle hands down without being defeated! So, with the help of 2 teachers (one on each side of me that I could literally lean on), I climbed the 4 steps to the stage . The 2000 people in the room saw that it was like hiking Mount Everest for me! And when I got to the top, I heard them all cheering and shouting for joy. Turning around, I saw them all standing there, not just my family, not just my friends, not just my teachers, EVERYBODY! It was my first standing ovation! It gave me the taste after that to always surpass myself no matter what.

I’ll end it here for today. Writing this article, I really feel proud of myself! Sometimes it pays to be hard-headed! See you soon for the last part of my story.

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