Today at work during some downtime in between guests, one of my fellow co-workers and I got to talking about my disability.
She asked me what I had, in which I replied “I have Ocular Albinism.”
The look on her face was that of extreme confusion.
“But, you’re not all white. I mean, you’re white, but, your hair and your eyes. You can’t be albino, can you?”
I laughed a bit and nodded my head.
I often get that reaction a lot from others when the “Game of 20 Questions” regarding my disability gets to that point. It rarely ever does, since I often would walk away or keep things simple, but on a slow day at work in a booth you share with one other person, you tend to get to know others on a one on one basis.
The question I get often also is “Who is albino in my family?” and the answer is simply “I don’t know.”
And to tell you the truth, that is the case. I really don’t know. My family is pretty good at tracking down my ancestry back about a hundred plus years or so. It takes two carriers of Albinism to create a person with Albinism, and we just can’t find on either side the culprits.
It’s weird being a genetic anomaly. Not quite considered an albino and yet not normal. Just in between.
Basically that means my Albinism is Recessive, just chilling in the background of my DNA but still makes a big enough presence to mess with me a bit. As a result, I’m light sensitive and suffer from Nystagmus, which often makes my eyes jiggle. I’m also near sighted and far sighted and use bifocals. Not something to be proud of being in my late 20’s, but hey, it works. I was told most of my life that I would never be able to drive and don’t have any intentions to attempt it. Once in a blue moon, I do crack open the white cane in places where I’m unfamiliar with as a way to identify to strangers I might need help. Ocular Albinism is pretty much a hidden disabilty and to the untrained eye, no pun intended, I could easily get confused as a drunk or a daredevil dodging traffic.
And yes, unlike a person with traditional Albinism, I’m able to tan, dye my hair, and such. My eyes are the only part of me effected.
Consider me like a Peep candy, I am colorful on the outside, but inside I’m pigment less and white, like marshmallow cream filling.
And who doesn’t love a sugar coated glob of goodness like me?