Would you believe me if I told you this picture is a lie?
It shows me reading a book in the city centre. The lie? I can’t see the book in that picture. The book pressed against my nose so I can actually read it would have been a lot less aesthetically pleasing.
I was born with multiple eye conditions including nystagmus. Nystagmus is a condition in which the eyes move uncontrollably, and it leaves me legally blind. Social media really is a poor representation of real life, isn’t it?
So, my life has been a series of falling over my own feet, “are you blind or something?!” comments from strangers, “how many fingers am I holding up?” jokes and generally feeling like a burden to friends and family.
Nystagmus is not a well-known condition, even in the medical world.
When I was 8 the twitching in my eyes and brain caused a doctor to diagnose me with cancer. My family prepared for months of chemotherapy and pain. I was too young to understand, but I knew that I was hurting them, and I didn’t know how to stop it.
Until I was brought to see an eye specialist who laughed and told them it wasn’t cancer at all, just nystagmus. It was a relief for everyone, but I still didn’t understand.
I did begin to understand that I was not like the other kids at school though. I would walk up to stand next to the blackboard at school to take notes and actually see it while other kids could somehow see it from all parts of the classroom.
I hated my eyes with a passion. If I could have “fixed” them I would have. The world isn’t designed for a blind kid to succeed.
That’s the thing about disability – the world isn’t designed for us, we design a new world every single day for ourselves.
Disability makes you stubborn, if there is any way of doing something without help most of us will choose that way, no matter how inconvenient it is.
Unfortunately, that feeling of being a burden I had as a child grew up with me. Anytime I had to get a friend to guide me on my walk to my bus because my eyes were moving too much to see anything I was convinced that that friend had better things to do and would never want to hang out with me again. That never happened of course, but it was a constant fear.
It was only in the last 2 years when I discovered a whole new group of people at college and got close to them that I realized that we all feel like a burden sometimes.
People with disabilities are not the burden on other people that we feel like.
I need help with getting home sometimes, but I am the friend you go to if you need someone to listen or a fantasy book recommendation. There is a girl who feels like her down days filled with depression make her the burden that ruins a night, but she is the one you know you’ll always be laughing with.
I wonder now, would I have been more of a burden if I did have cancer? I don’t think so. I do think that the things we tell ourselves hold us to a higher standard than we hold other people to.
I have discovered that my nystagmus is a part of me and if I could “fix” it now I would not. I have found my own ways of getting around that are unique to me and I am only a burden to myself. I’m okay with that.
At the risk of sounding cringy, you are not a burden you have your place and you give other people their place.
At the risk of sounding like a nerd, “the world isn’t perfect. But it’s there for us, doing the best it can …that’s what makes it so damn beautiful” – Roy Mustang (Fullmetal Alchemist).