Currently, I am having a spasm. No one can see it and if someone looked at me, they wouldn’t know that I’m having a spasm unless I said the words ‘I’m having a spasm’. My disability is invisible. If you passed me while walking down the street, you would think that I just ‘Hurt my leg’, but no. I get that assumption made a lot about me. It’s not anyone’s fault for assuming, even I amuse from time to time, it’s just frustrating when someone says ‘Football, was it?’ with a smile. And I HATE to make them feel bad about them selves by replying ‘Oh, ha, no no, I’m disabled’. I see the smile drain from their face and they say ‘Sorry! Sorry!’ But it’s not their fault! And I tell them that but of course, it won’t stop them feeling bad. That’s just one of the many problems that I face day-to-day. Another problem with my disability is simple activities, such as standing. If I stand still for, lets say 30 seconds, I’ll start to have a spasm. Because just me standing has tired me out so that I can’t fight Dystonia off. And the fighting hurts, it really does hurt.
And then there’s school. School has been a challenge since I ever started it. Because Dystonia isn’t a well-known disability, schools don’t know how to handle my disability. I don’t want to be home schooled as my Parents simply don’t have the time so I have to go to school or get a tutor (Which I would hate). My class and the people in it has changed since last year. I know about 60% of the people in it (It’s a big class), and they obviously know about my disability, and I’m quite sure the other 40% know about my disability. But no one acknowledges it unless I bring up the topic. Why? Probably because they’re afraid that they might somehow offend me, I’m not offended by being asked about my disability because people get curious and that’s fine. But if I have a spasm in school, I get nervous about saying to the teacher ‘I’m having a spasm’ because they won’t know what to do and they’ll ask me what should they do but I don’t want to make that decision, it’s just so hard to tell someone who doesn’t know what to do. Most people don’t understand my condition. Most DOCTORS don’t understand my condition. And to be honest, I’m not sure that I fully understand my condition.
Dystonia is always there. It can be irritating, and then it can be agonising. It’s the worst pain I’ve ever felt and probably will feel. And when it first hits you, as in the first time that you have a really bad spasm, it’s terrifying.
If I hold out my hands, they shake slightly and my thumb ‘jitters’. I can’t keep my arm still because of Dystonia (And a bit of Cerebral Palsy). That’s one of the reasons I can’t get to sleep easily, I can’t stay still.
This is my daily life. Dystonia is so unknown and hidden in the world. It infuriates me that not nearly enough people are aware of this condition. And they should be because it is a terrible, terrible disability. But I do admit that there are worse disabilities and I’m SO lucky that I don’t have a disability more sever. But it is still a horrible thing that has no cure and it effects loads of people around the globe.
Dystonia can make you feel invisible, worthless, useless, but you aren’t. And deep down inside you know that you aren’t. It’s just that Dystonia suppresses that. If you suffer from Dystonia, FIGHT. I’m not a doctor, but I’m the patient and you and me know more about Dystonia then anybody else in the entire world. And if you ever feel down, frustrated or depressed, just remember that you’re not alone. Me and you are unique, and uniqueness is the best thing in the universe. So don’t give in, because if you do, Dystonia will win. You are on a unarmed civilian in a battlefield against a supreme force, but you CAN fight back. And if you fight back, it’ll be worth it, and you WILL win. Mark my words. Stay strong, and never, ever give in.