I’m often remembered, recognised or referred to as ‘that girl in the wheelchair’, but I don’t mind. I’d rather be recognised and remembered like that, than not at all.
I have a fear of falling off the planet.
Wonder if there’s an obia word for that…
Since I’m having an honest -share personal things with you- day, let me tell you about my disability.
Some of you know this, others don’t: I’m physically disabled.
I was born on September 30th, 1987, a full 12 weeks before I was supposed to be born. Premature birth was more common in the 80s for children born out of IVF.
My lungs were barely fully developed as I was still very small so I was ventilated. At some point on my first day, my lung collapsed and the pressure on my brain increased, causing me to have a hemorrhage, which did some serious damage.
I have, since that day, had cerebral palsy. For me, this means a left sided spasm (the entire left side of my body is affected) and even some traces of it in the right side of my body (like fine motor-function). Most people, when they think of spasm, think of involuntary flailing of limbs. This is not the case for me, but there is constant tension in my body and I can’t control the movements I make as precisely as I want.
So I walk funny. As a child there was never much of a problem with energy, but by the time I was sixteen, I needed a wheelchair for long distance trips. Now, when I walk, it’s with a walker. Getting older - and lack of exercise of those muscles that I can’t use - has made things a lot worse. I can’t walk without my orthopedic shoes without holding on to something anymore. My energy is drained MUCH faster than it used to be.
Still, I live in my own house, by myself. I have a part-time job (that I’ve had for three years) and a creative outlet. I’m not always happy, but I try to be.
Sometimes I feel really pressured when people call me an artist or praise me on my art
It makes me somehow feel obliged to live up to it and to do more art. It makes me sad that I sometimes can’t. It pressures me because people think they see someone who’s really good at something. But art is just a part of my life. It’s not as big a part as I would like it to be. I wish it was all. But that’s not all I am. And sometimes it makes me sad that all people see is that. And that they call me fortunate. Because I don’t always feel fortunate.
My life is so much more, and it so much harder than it seems because those pieces of art are only small successes that don’t even out the hard things in life. They only cushion them.
I’m sorry if this is a selfish post. I’m sure that some of you will unfollow me now. And I’m sorry for that, too.
I’m probably going to use this blog to rant about life a bit.
Do you guys mind? And would you respond to it?
Sweeties, if you guys want to have some deep conversations about life, love, relationships, hurt, society etc with me, go there ^^^^^^^^. I’d very much like that.