“Congratulations me! You won the jackpot! Only ONE in every half a million have Friedreich’s ataxia – ONE IN EVERY HALF A FRICKING MILLION – and YOU are that one!
Oh, and by the way, your prize is that you will have to have three surgeries before you reach fifteen, and lose the ability to walk or weight-bare by twelve. As an extension of this, a mix of social anxiety, slurred speech and hearing problems will isolate you from peers (which sucks, even if you didn’t much like them anyway).
That is all pretty crap, generally, whoever it affects, but being diagnosed with Friedreich’s ataxia at eight is A LOT for a young brain to deal with. Imagine only being able to watch your friends growing up, trying new things and going new places and… Actually, I don’t know quite what I missed; I just know I didn’t, and still don’t, want to miss out.
I got an email from Ataxia UK the other day, and in the email was the question “why you want a treatment centre for your child/your younger self…” and it has just played on repeat in my head. ONE SENTENCE to say how Friedreich’s ataxia has messed up my life is just stupid. So this, ladies and gentlemen, is an essay on why having a treatment centre YESTERDAY still wouldn’t have been soon enough.
Being a child with ataxia
I don’t even feel like I HAD a childhood, in some respects. I mean, I still grew older but it seemed the older I got, the worse I got. Symptoms. Hospital appointments. Diagnosis. More, and worse, symptoms. Hospital appointments.
That was, and still is, my life. Since age eight, my life was punctured by hospital appointments, getting ill and getting worse. Such fun.
My life now
Having a PROPER treatment – and by that I don’t include the meds I take for fatigue, pain or for my heart – would mean freedom. That is not me mistaking “treatment” for “cure”, by the way. I know a treatment will not enable me to be normal. Reading this through, I doubt anything would make me “normal”. Even being able to stand up on my own or taking supported steps… Well, THAT would change my life. That would give me my life, if I’m honest.
On that subject, “my” life doesn’t currently feel like it belongs to me. I’m actually not being melodramatic. My life belongs to my parents. I do love my parents, but rebelling is part of being a teenager, and yet another part of MY life I’m missing out on because I rely on them so much. I can’t even go to town on my own because I can’t go on the bus because for that you need to walk, which I can’t do. On paper, having a chauffeur drive you around everywhere sounds pretty good. In practice, not so much.
Again, my parents are amazing and I love them so much – and I haven’t said that just in case they read this. I’m far too dependent on them, and it’s not fair on anyone. Hey, but life isn’t fair…that isn’t helpful, is it?
There’s a saying among people that goes ‘don’t judge a book by its cover’, but people DO judge others by looking at them. I’m judged by my chair and the fact I’m shy and don’t talk much, but that doesn’t mean I can’t, or that I can’t feel isolated. Just because I hate everyone all the time doesn’t even mean I actually want to hate everyone all the time. Sometimes I almost feel like I have to…”
“This is all a hundred percent true, and honest. If offence is taken at my humour, that is NOT my problem. I’m not going to cry; I’ll laugh instead.”
Regina Phalange
