My Journey to a Friedreich’s Ataxia Diagnosis, Part 1

First in a series.

From the time we are toddlers, we start dreaming about the future. We want to be firefighters, teachers, rock stars, race car drivers, or in my case, a zoologist. So many exciting possibilities exist, and we want to do them all.

As we get older, we try different activities to see what we like. We craft, play sports, bake, take different classes, and imitate our parents and friends. We see what we are good at and enjoy, and then start planning for our futures. We study specialized courses in college or train for certain jobs. We work hard to make our future happen.

But what if all that work and all of those plans suddenly and drastically change? What if that future you have been working toward your entire life is seemingly wiped away in one scary blink of an eye?

That’s what happened to me at the age of 25. I was diagnosed with Friedreich’s ataxia in 2013.

Let’s rewind a couple of years for the full story.

Throughout school and college, I was just like everyone else, physically and in every other way.

I had a passion for swimming and joined summer league the first year I could. I swam competitively through my senior year in high school. I even got a waterproof cast the summer I broke my arm between 1st and 2nd grades so that I could keep swimming.

I played softball during elementary school and junior high, then volleyball in junior high and for half of high school. I was on the track team in high school, competing in long jump, high jump, and triple jump. I danced in many classes and recitals. I found a passion for cheerleading in junior high and did “competitive cheerleading” until I made the squad in high school. In other words, I was athletically blessed and loved trying my hand at everything. (I’m allowed to brag, these were my glory days!)

I met my high school sweetheart, Kyle, my sophomore year. I knew by my senior year that I would marry him. What can I say? He stole my heart. He was kind, smart, supportive, competitive, passionate, and oh-so-handsome. We always had adventurous dates and made big plans.

Little did I know that I was harboring a sleeping giant. FA dropped little hints that I wrote off at the time. My lack of reflexes used to be my “party trick.” Friends would knock on my knees to try to make them jerk, and we would all laugh when they didn’t. I never thought to ask a doctor about that.

I took an athletic break in college. Except for a semester of racquetball and jogging for physical education credits, I worked out occasionally, but really just enjoyed being young, healthy, and carefree.

Kyle and I got engaged in July 2008 and set a wedding date for November 2009. During our engagement, I graduated early from college and started planning our wedding. A big part of the plans were dance lessons. My first dance had to be beautiful! I picked out the perfect wedding heels and our song, “I Cross My Heart,” by George Strait.

Kyle and I have always been competitive. I was ready to wow him with my ability to pick up choreography. When we started dancing, I wasn’t doing great. I was getting tripped up, stepping on Kyle or him stepping on me because I didn’t move my foot to the right place. I thought, “I’m just out of practice.”

We had only danced at clubs, parties, and dance halls; we’d never done choreography. I thought we’d get there, but I wasn’t getting better, even with practice. So, I blamed the heels. I blamed Kyle’s partnering. I blamed being out of shape. I never dreamed that this was the beginning of a very serious medical journey.

After our wedding, we were blissfully young and carefree. We went on big walks and played beer-league softball and sand volleyball. We pushed each other at the gym. (I spent many an hour on the stair-climber at Gold’s Gym.) We were in love and nothing held us back.

Then, I noticed I was falling more in sand volleyball. I wasn’t comfortable sprinting for balls in the outfield because running was strangely hard. I chalked it up to my age or lack of training. One evening at softball, I fell getting into my stance in the batter’s box. I knew that it wasn’t normal. Something was going on. I decided to start searching for medical answers for my poor balance at the age of 23.

Next week: My journey to a diagnosis.

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Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.