Reinventing the meaning of Hope with Friederichs Ataxia (FA)
When I was 10 years old, I would hope for a cure and yearn that my disease would somehow vanish. I would hope to be able to make my own steps and hope that I would somehow become 'normal’ one day. Hope is a very powerful desire that comes from within, and it was the only thing that kept my life going at the time.
The people who follow me on a regular basis probably know that I was diagnosed with Friedreich’s Ataxia at 10 years old. If you google or Chat GPT Friedreich’s Ataxia, then it will give you loads of information. But it lacks the lived experiences, the love, the hurt and everything in between. In short, Friedreich's Ataxia or FA is a rare, genetic neuromuscular condition that affects balance, coordination, speech and strength.
I got this golden opportunity to participate in a clinical trial and support the scientists in finding a proper cure. It was a very tiring road trip to the hospital. But, the biggest pro was that I was playing a part in curing this disease, atleast I thought. During the period of this trial, I've learnt so much on what I was living with. Those constant blood tests, EKG's, eye tests and efforts that these doctors were taking in housing all of us brought a big smile on my face that one day FA will be gone from our lives. This hope took over the majority of my heart - to the point where it became poisonous.
When we wrap this hope so tightly around our heart then it becomes a form of expectation, and when that isn't reached, we end up drowning in disappointment and misery. This is exactly how I felt when I found out that the drug that I was being tested with wasn’t a cure at all - not even close. My whole mind revolved around this cure and the idea that my happiness depended on it. Most importantly, I didn't want to accept my condition which left me feeling defeated in life.
Hope IS a good thing but maybe just not the way we were taught. Have Hope but live in Reality. Have hope but also be open with the outcome. Have Hope but, don’t let it delay our acceptance. Have Hope but, don’t let it interfere with our peace. Most importantly, have hope but don’t fix it on a single outcome like I did. I won’t say I don’t want a cure, but my heart has gravitated toward other things now. The hope for a cure still has a corner in my heart—held gently and cautiously—for my own body and for everyone living with FA with more strength than the world will ever see. It took time, but I’ve learned to accept this condition, and I trust that when a cure is meant to come, it will. Until then, I hope I can succeed in all the things I am passionate about ✨