My Diagnosis Story
My early years were typical. Sports were never a big interest of mine- I was a total girly-girl- but I was still quite active. My parents frequently took us on strenuous hikes through national parks across the country. Though I gave a few sports a try, dance ultimately captured my heart.
During 7th-grade volleyball practice, I recall running laps, and lagging behind. Running affected me more than my teammates, though no one made this connection at the time. My coach mentioned to my dad once, “Yeah, Kelly just seems worn out after running.” They shrugged it off; it was no big deal.
I fell in love with dance- ballet, jazz, and ballroom. But- spoiler alert- FA was lurking, accentuating each dance move with a subtle air of clumsiness. Prior to our annual recital, I would lock myself in my room and record and practice my routines. I blamed myself for not being a good dancer.
High school came and I struggled with simple things like going up and down the stairs at the same speed as everyone else. I strategically planned out my days, like when to carry which books. I couldn’t carry too much at once (I had to hold the railing on my right side), but also couldn’t go all the way back to my locker in between classes if they were too far. I became accustomed to packing up my things and leaving class after everyone else, so I didn’t hold anyone up. Everything was done with strategy in mind, and I didn’t realize that was atypical.
The bleachers in the school gym were another major source of anxiety for me. I sat in the first or second row and watched as everyone else casually moved up and down without giving it a second thought. Self-doubt was a pervasive and painful feeling. I was clueless as to what was wrong. I used to dread all-school mass in the gym; eventually, panic attacks became a recurring problem, and my parents let me arrive late on days when we had mass.
There were other situations that brought me severe anxiety, including going to football games, school dances and even crossing rows of desks to turn in an exam. In retrospect, it was obvious that there was a problem with my body, but at the time, I was too preoccupied with my time in high school.
I was convinced everything strange about me was somehow my fault.
I tried multiple rounds of physical therapy, visited different specialists, endured countless tests, and was told I was perfectly healthy. I exercised daily at the local recreation center to strengthen my muscles and work on my cardio.
Overall, I'd want to think that my time in high school was typical, but I believe that deep down I knew something was very wrong.
Then, in May 2011, in a dimly lit doctor’s office, weeks after genetic testing, a white-haired doctor gave my dad and me the news. I had a rare disease, called Friedreich’s ataxia. My dad was expecting it. He let out a sigh and assured the doctor he would explain it to me.
The next few hours felt surreal. I felt some relief; I wasn’t doing anything wrong. My questions were answered. It all made sense. None of it was my fault.
Yet as time passed, I became aware of my dad's distress. Although I can't recall our particular exchanges, I do recall him telling me that I might end up in a wheelchair. I didn't believe it at first and immediately raised my guard.
Now, quite a few years later, that defensive feeling has turned into sentiments of optimism and faith in a treatment or cure, as well as peace in the understanding that using a wheelchair does not have to prevent one from having an exceptionally fulfilling life.
I now love repping rare disease through apparel and accessories (as long as it aligns with my personal stlye).
Though life may not have turned out the way I had anticipated, my ability to adapt and persevere has opened a world of fresh, incredible possibilities and perspectives.
Is any of this familiar to you?
x Kelly
