I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
I knew in my bones that something wasn’t right with my body. I wanted nothing more than to find out what was happening, understand why it was happening, and learn what I could do to stop it. In 2013, I began my desperate search for answers.
I had no idea that the answer to my quest was something big, scary, and untreatable. My diagnosis of Friedreich’s ataxia (FA) on Aug. 19, 2013, prompted the most unexpected mix of emotions. While I was so relieved to finally have a name for what was causing my symptoms, it was completely overwhelming.
With my diagnosis, I learned that FA is a progressive disease. But because FA is so rare and progresses differently for each person, it was impossible to find answers to the endless questions that plagued me.
It was such an odd feeling. I was symptomatic enough that I needed answers, but I didn’t yet consider myself to be disabled. The only significant difference between the day before I was diagnosed and the day I received it was that I now had a label. So I had to decide how much power to give that label.
I didn’t want to recklessly discount the serious nature of FA, but I also didn’t want to shortsightedly accept my fate by becoming totally disabled overnight just because of a label.
That begged the question: to label or not to label?
Heartache replaces frustration and fear
I can argue for both schools of thought. While I do feel that the FA label empowered me to take charge of my health, get involved with the FA community, and start answering some questions, it also had a negative effect on my thoughts and feelings about my present and future.
It’s been torturous to realize that, until more treatments and a cure become available, my symptoms will slowly worsen, day by day, week by week, and year by year. While I didn’t become disabled overnight, the emotional weight of my diagnosis made it feel like I might as well have.
Would putting off my quest for answers have spared me those moments of heartache? Probably not. That heartache would have manifested as wondering, worry, fear, and frustration.
My favorite band for more than two decades is Dashboard Confessional. Their song “This Ruined Puzzle” starts with these lyrics: “This ruined puzzle is beige/ With the pieces all face down/ So the placing goes slowly/ The picture’s of anything other than it’s meant to be.” I still had worries, wondering, frustration, and fear, but now I had the picture of the puzzle I was working on: Friedreich’s ataxia.
Now that I am officially disabled to the point where I am 100% dependent on assistance to navigate my life, I appreciate having an answer to the countless questions that arise.
Although I wish FA wasn’t my label or the picture on my puzzle, I’m still hopeful this will change. I’m still hopeful that I’ll see more treatments and an eventual cure in my lifetime. I trust that my efforts will contribute to a brighter future for me and the rest of the FA community.
Until then, I’ll keep doing my best to find the balance between letting that label empower me and letting it overwhelm me, all while resisting the temptation to let it be an excuse.
“I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit.” — Romans 15:13
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