Yeah, that”s my right eye!  I was about 14 years old when that was taken and somehow I manage to have saved it all this time. XLRS stands for X-Linked Retinoschisis, a rare genetic eye disease that I was just lucky enough to be born with. I have it pretty bad in the right eye, I’m actually legally blind in that eye, and not so bad in my left so things could be worse.  It’s expected that eventually my left eye may deteriorate, possibly even as bad as my right, but nobody really knows.  I’m OK with that though because from my perspective I see as good as I ever have.  I honestly have no idea what I’m missing by having just one eye.

I have some vision in my right but its hard to explain.  The best representation I can find of what I see when i close my left eye is shown here (well, only when looking at a horse of course).  I see everything through this dynamic field of static so I’m able to pick up movement and I can identify shapes and know the difference between a horse and a dog for example, but beyond that the right eye just kinda hangs out and does its own thing. This post isn’t about XLRS though despite the title, its about how I’ve managed to live with what some call a “disability”.  Maybe you’ve guessed already, I don’t call it that.  I don’t call it anything, it is what it is and I’m thankful for everything I do see, not what I don’t.

When I was diagnosed at a very young age, the doctors told my parents all sorts of bad things – the one that sticks out the most though was their prediction that I would have some sort of learning disability and would need to special treatment in school and throughout life just to “get by”.  Luckily for me my parents didn’t listen to a word they said.  Well, they followed treatment plans of course which I look back on now and see as cruel and unusual punishment.  For example, I had to stumble around as a toddler wearing an eye patch over my good eye in an effort to strengthen my bad eye.  Yeah, that was just great. All I got out of that was a whole bunch of stitches and scars from running into things!

But the point of this post is to highlight what did work, not what didn’t.  The approach my parents took was basically to raise me as if I had two eyes. Don’t get me wrong, we followed medical advice in terms of tests, seeing specialists, looking for treatment (there is none), following up, etc., but when it came to setting artificial boundaries, no way.  In fact I’m not even sure to this day we ever said anything to my teachers other than I preferred to sit in front because my vision wasn’t all that great.  Heh, to this day I still sit in the front at meetings, conferences, classes, etc., and most people think its just because I’m a go-getter front-row kinda guy; I’m that too but that’s not why I sit in front 🙂

I want to stress that, at least in my case and I’m certain that I’m not alone, with the right emotional support and loving environment, you can do anything regardless of whatever physical or mental barriers are placed in your way. To those doctor’s that said “He can’t” I guess I have to say “Thank You” because I think it was that negativity that pushed me to answer with “Oh yeah, watch me” and that’s a mantra that sticks with me today across many areas of life…