Friedreich's Ataxia does not have a cure or treatment.
That's the first thing that people usually hear when they hear about my disease. No cure. No treatment. And because FA is a progressive disease, it is only going to get worse.
Let me tell you, living with an un-curable disease is one of the most awful challenges. Learning I had FA took out all of my hope and smashed it into the ground. I felt like I was wandering around with no purpose, knowing that my body was slowly deteriorating. And there was nothing I could do about it. I wanted to scream. Life felt pointless.
And then I found hope again. Hope for a cure. Hope for something, anything, that could make life a little easier. I pictured myself in the future in a world where I didn't have to worry about FA. A world where I was just like everybody else. It was pretty nice to imagine life without a disability and FA becoming a distant memory.
I lived in this haze for a while. I sort of put my life on pause. I kept having the thought that "I will wait to do xyz until there is a cure." I would wait to move away for college. I would wait to go to a party. I would wait to try to make new friends. I would wait to travel somewhere for fun. I would wait to learn to drive. Very quickly, this hope turned into waiting. I had built up my mind to the idea that a cure would come and save me from all the hard parts of life.
The definition of hope, according to the New Oxford American dictionary is "grounds for believing that something good may happen."
Hope isn't waiting.
Hope is believing.
I'll be the first to tell you that my life has not turned out the way I planned. I never pictured that I would be a freshman in college, six hours away from home, in an amazing sorority, in a wheelchair. Living in that haze of waiting, I never even thought I would graduate high school with FA, much less go to college with it. I thought a cure would come before then. I didn't even want to commit to move away for college in the beginning because I couldn't wrap my head around doing that with FA.
The point of this post is that I have learned that I can't put my life on pause. I can't wait for a cure to happen to start living. I have to live now. Even if it's not the way I pictured it. All I have is now. And I want to enjoy my life instead of sitting around waiting for something I can't control.
Yes, I still have hope for a cure. I believe it will come. I think we are closer than ever. But I can't put all my happiness into waiting around for one. It'll happen when it happens. And in the mean time, I'm going to enjoy the life I have now.
Comments