Why a Cure Isn’t Everything to Me Anymore
When I was younger, I just wanted to be healthy and able-bodied.
When I went to sleep, I always dreamed of myself as walking; I never saw my wheelchair in my dreams. And when I was awake, I constantly imagined a future for myself in which my disability was no more.
I imagined a different reality for myself every day because the one I lived in was not ideal according to society. I wasn’t healthy or able-bodied. There was something wrong with my body, so my life was not going to amount to much — or so I was led to believe.
I was that unhealthy baby that my parents hoped they wouldn’t have. Technically, I wasn’t diagnosed with FA until I was 11 years old, but I was still born with the recessive gene that gave me FA.
And since my diagnosis, all I could think about was a cure for my disease-riddled body. A cure was everything to me. It was a way to make me whole and give me that second chance at life I so yearned for.
I spent many years being unhappy with who I was because of my disability. I was seen by society as a lesser human being because of it, and it took me some time to shake this feeling off.
No one deserves to feel that way about themselves, especially when it’s about something uncontrollable. My physical limitations don’t stop me from enjoying life, and other people shouldn’t judge me based on my disability alone.
I’ll never forget seeing a family friend at the shops one day, not long after my diagnosis. She threw her arms around my mum hysterically. I guessed she must’ve heard about my diagnosis, but I couldn’t really hear her whispering to my mum. As she turned around to face me, she asked in a really loud voice how I was doing. I responded by telling her my brain was fine even though my legs weren’t.
That was the first time I realized I wasn’t like everyone else anymore. My newly diagnosed disability now gave other people license to judge me and treat me like every other disabled person out there.
I will never not have hope for a cure. Hope is a candle that we all carry throughout life, but it is no longer hope for a better life that makes my candle burn. I already have a better life because I know that my disability is not all that I am. My life may be different because of it, but by no means is it worse off.
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.