Welcome to My World

I was born with a vision impairment called achromatopsia. I’ve never been diagnosed (for now), because this disorder is rare. The part people find most interesting is that I’m completely colorblind. They always ask me a flurry of questions when I tell them that, which I don’t mind. What they probably wouldn’t find as interesting is that this disorder also means I struggle with pretty bad visual acuity and extreme light sensitivity.

Everyone has struggles, right? Sometimes they are cleverly hidden, and sometimes they are painfully obvious. Unfortunately, we live in a culture that values flawless perfection. Maybe I know better than most that this is impossible. I think that my story, like the stories of those like me, can illuminate the balance between strength and weakness, between independent achievement and humble dependence. And I have this weird idea that my friends and family would like to understand my perspective of the world and share in the adventures, and misadventures, of the seeing blind (I know, it sounds like the walking dead or the undead (so, maybe the unblind?)… except I’m not going to eat anyone or haunt you in creepy places. Ok, I’ll stop). : )

First, the basics. Here are the two hardest things about achromatopsia:

1) Without fail, every written account of someone with achromatopsia has said that the hardest symptom is the extreme light sensitivity. I know you’re sad that I can’t see colors, but, frankly, I don’t know what I’m missing there. What I do know is that stepping out into daylight for me is going from legally blind to almost completely blind. It’s worse actually. It’s like the visual equivalent to trying to hear when you’re right next to a roaring jet engine. You know how you see after stepping from a dark room into the sunlight, those first few seconds when you can’t see a blessed thing? Imagine if that didn’t go away. Even indoor lighting, depending on an endless list of potential variables, can be debilitating.

Here’s a video which gives a pretty good idea of what this is like (the first half or so—the rest is about lenses to help correct it some):

https://www.youtube.com/watch?v=CFBuwIXCEZ8

 

2) Achromatopsia causes some pretty daunting social challenges. The emotional/social consequences of this disorder do vary according to a person’s experience and support system, but one idea reoccurs to different degrees: the feeling of being in the middle of two worlds, being stuck between disability and normal life (hence the name Seeing Blind). I don’t think I’ll go much into this in this post, because there is a lot to say on that subject.

Finally, I want to make sure you know that I share this not because it defines me, though it has helped shape who I am. I share it because I think it can be helpful (and amusing at times—wait until you read some of my mishaps). I hope you’ll keep reading, and I hope you can gain some encouragement and direction from my experience.