The idea of writing this post came to me very suddenly. Since the beginning of this blog, I’ve always wanted it to be about my feelings, not facts from my life. And I’m not the kind of a person who admits “hey, I’m disabled” to people whom I’ve met on the Internet easily. It usually takes time and lots of courage. I suppose it’s because Internet really is a safe ground - there’s no one staring at you and they don’t judge straight away.
But yes, I am disabled. I have spinal muscular atrophy type II. The entire terrible name means that all of my muscles are getting weaker with time. It will never end. Or it will, with my life. Now, what I’ve noticed is that people who get to know about SMA think muscles = strenth, so when muscles are weak, I’m weak. And that’s true, of course - each year I can feel myself being unable to do some tiny things I could do years before. Those changes aren’t very visible to others, I think. What IS visible though is that I need help with almost everything. To visualise it more for you I can say that a glass full of water is too heavy for me to hold sometimes. But what I meant to say is that muscles are needed much more than we think. They keep up the spine, for example. So when they’re weak, the spine curves to one side. That leads to squeezing your lungs, which are ALSO weak, so you can’t even get mad and shout properly. Then there’s heart, too. Made of muscles. And I think you can imagine what will happen one day when the heart gets too weak.
So basically, it’s kind of a struggle. It doesn’t get better, there’s no cure and it doesn’t make my life easier in social matters either. But when it’s that hard, there comes a moment when you understand what’s worth appreciating. The little things start to matter. Like when a friend stays, instead of saying „I can’t look at you getting worse and dying”. Or when someone takes time to get to know you, instead of noticing only the wheelchair. Or when a person wants to be close because they like you, instead of being afraid to even shake your hand for a hello.
That’s why I keep what I said on the page about me. I do love life. I love it, because that’s what I got and the only thing I could do was to learn how to live it the best way possible…