I do not really mind being blind; it is a major part of me. I would not go so far as to say that my blindness is who I am, because it’s not. Blindness should not be what defines me, although, I often find that that’s how others see it.
I was born with a condition called Lebers Congenital Amaurosis. It effects the connection between my brain and my retinas. This lovely condition has many side affects: including, but not limited to, cataracts, a flat affect, light sensitivity, and nystagmus.
You should not take Lebers if you are pregnant or over the age of 45. Please tell your doctor about any worsening symptoms.
I’m kidding. I have all of the above, excluding the flat affect. I’m still trying to decide if I like the cataracts or nystagmus more. They both keep life interesting. Nystagmus, in case you were wondering, are uncontrolled eye movements. Thats why my eyes are usually looking everywhere than at the person I’m talking to. And if they’re really feeling bold and sassy, they cross. They feel bold and sassy a lot. I like to think of my eyes as trend setters because unlike most eyes, they like to be white and shiny in their centers. It’ll catch on some day. It’s the cataracts. There is nothing quite like a little kid saying to you, “Why do your pupils look weird?” I’m a vampire, kid.
People always ask me if I’ll ever be able to see. Currently, there is no cure for Lebers, so I can’t really even begin to answer that. Cures are being researched, but Lebers is hard to cure. It is genetic and there are many different forms of it. The form that I have is one of the least common, so my cure will most likely come last. Lebers is pretty rare in itself. About two in every 100000 people have it.
Usually, after that question, someone makes a statement about how I really must want to see. People ask if I would jump at the chance to be cured. That question is actually getting harder and harder for me to answer. I can say that I wouldn’t take a cure until I’m blue in the face, but when it comes right down to it, I don’t really know. There is no cure right now, so it’s easy to say no, because there’s no option for me to think about. But if they found a cure tomorrow, I’d have to think about it for a while. So, no. I would not “jump” at the chance.
The final question in this series is usually something along the lines of, “Why in the world would you even need to think twice about being able to see?” My answer to that is quite simple actually. I have been blind every single day of my life. Not once have I seen a face, or a color, or an ocean. Sight just doesn’t make sense to me (pun intended). If I one day had sight, I would have so much to learn. For one, I would have to learn my colors, and how to read and write, and how to do so many other things. It would be like going back to kindergarten. I’d also have to learn how to use my sight to walk, to cross streets, and even to interpret facial expressions. I’m not sure that I’d want to relearn my entire life. Even though there are an lot of challenges with being blind, some of which I’d prefer not to have, I believe that there would be many more challenges with suddenly having sight after going without for so long.
And that, my friends, is where I am choosing to end this post. But first, I want to leave you with something to think about: If you were given the opportunity to experience a day without sight, would you see it as an opportunity to learn or a devastating prospect? You don’t actually have to answer, but it is something to think about. Maybe you will then fully understand why the prospect of having sight is so daunting for me to think about.