Is my life harder than someone else's? I don't know because I don't live his life. I can only tell you about my fight, my strugles. When I was 18, in my last year of high school, a doctor told me I had FA. I think I didn't realize it untill I told my friends, saying it out loud make my burst out of tears. I never soud long still with that fact, I had it and I had to move on, I couldn't stop my life. I had to go with the flow.
But now my balance is a abstacle in my life, I can't ignore the facts. Every day is a battle, keep on walking, keep on walking, go down the stairs (wich only takes a quarter of an hour). A sudden movement and I am out of balance. I can't subscribe how it is, I can't even apprehend how it's possible. I always thought that balance was something that is in your head, and believe me, my head works fine.
How would it be to have a normal life? Like my fellow students? I don't know and I probably never know. But nothing is perfect, right?
I just read about muco, and I keep thinking it's much worse than FA. But than it's so different, can you even compare it. It's something morbid to compare your disease with another, but I think it's a reflex.
I always say 'it can be worse' and I believe in that quote. You should be happy with what you have, where you are and what you are. Muco is a better known disease than FA, why? Because more people suffer from muco.
But still there is no cure, not for muco, not for FA, not for ALS. There is one thing they have in common, the answer can be found in gentherapy. I'm no doctor, I don't know exact how it works, but by transplanting a good gen instead of your bad you're healed.
Maybe this is an utopia, maybe this will never happen, but I believe in it. I have to because there is nothing else that can safe me from the decline. But gentherapy can not turn back time, it can not restore the damage that is been done. And I can tell it's not getting better, FA knows no pitty, it's unmercifull.
When I was little there was a tale about a grain storage and a bird. Every day the bird takes one grain 'till the pile is empty. The grain storage symbols a human life, one pile is bigger than another, one is smaller. People with a disease can have a enormous pile, but there is no nice bird that only takes one grain, there is a hongry crowd that takes as many as he can. The crowd is unmercifull.
But still it can be worse, because there are still grains in the pile. As long it's not empty, I will fight.
Why did I call my blog 'the eternal sunshine' if I keep wining about things like a stupid bike? Okay, I'll try to keep in mind to look on the bright side of life! For one, my crazy bike. I can't imagine not having it anymore. It's so useful to be able to go everywhere you want, without counting on the trams or busses. (as I'm always late then, so with my bike I can be on time!) FA is something you have and have to deal with, you can't stop it or cure it. I'm trying to fight it but even that has his limits.
I don't wound to minimize the effects FA has for one day I want be able to take my bike and go were ever I want. One day, the symptoms will get worse... But that's then, and now I'm enjoying my independence! There is a saying 'the worse lies always before or behind us'. I agree. Right now, I can image it getting worse, but also I think that I have been true more difficult episodes then this I'm in now. You have to take your life as it's presented to you. I'm not saying that you have to sit and wait, no, run and see what's passing you. Fight it, cry for it but don't deny it, because then you're denying you're life.
I have difficulty talking about my disorder. FA is something very personal, it defines your whole live, and sometimes people underestimate it.
Life is so much harder when you don't fit in, in any kind of way. As I see it there are three kinds of people, those who don't bother about people who are different, those who pity us or those who accept us as we are. I can tell that the last group is the rarest! But even with them, what to say? If you always talk about your disease it's like you're wining and want pity! It's also my character that makes it even more difficult. I'm not someone who likes to talk about what's wrong. Talking about it makes it real, you accept it. And even though I accept it I cannot talk about it. This blog is a step in the right direction I think.
Recently I bought a tribike, as the word explains it's a bike with three wheels. Even though it makes me more freedom in my movement, I die a little inside every time I step on it. With that bike it's so obvious that I have a handicap. And I swear it's the first time I use that word according to me...
If you live with a malfunction, there are so many difficulties on the way. How you handle those is your choice, but it defines you.
I'm Apolline, I'm 21 years old and I've got Friedreich's ataxia (FA). I know this after my 18th birthday and from that day forward I get to learn with my disorder.
But what is Friedreich's ataxia? In human language: it's a disorder that slowdowns and after a while stops the information who goes from your brains to your muscles. It starts with your balance, you triple a lot, fall over your own feet, but also your coordination goes more and more difficult. I've always been clumsy and now I know why. The chance you'll get diabetes is bigger and the last and worst is that it infact your heart.
How do you get Friedreich's ataxia? As for those who know what the word ataxia means, is it unnecessary to say that it's genetic. If your mother and your father both gave the mutated gene that causes FA and they give you that gene instead of the good one, than you've got FA. I explain it like it's a choice your parents make, it's not. No well thinking person would choice a child with the disorder over a healthy one.
How do you survive Friedreich's ataxia? How do you survive anything? I always think that it's not that bad. And it's not! Even if you have a terrible day, you must be thankfull for what you have. Why would a live with a disorder mean less than an other? It doesn't, it's still a life worth living!
