Albino

Since I am going to be posting some of my writing here, and a lot of my writing is memoir, I thought I'd preface all that with a brief discussion of the condition that I have, which is called albinism, as it obviously colors my story and who I am. I thought it would be a good reference point for future stories. I also thought it would be good for any new readers (and I always want those, and want to make this place as user-friendly as possible) and also for long-time readers because I am still working on being more comfortable talking about it. And I want to welcome discussion, if anyone has questions or comments.


Here it is:

I am albino. Albinism is a recessive genetic condition characterized by lack of pigment and legal blindness. My skin and hair are paler than pale, and my eyes are a translucent blue that sometimes looks red in the light. Since albinism is recessive and fairly rare, I'm the only one in my family with the condition.

As an albino, I'm sensitive to light. Outside I wear sunscreen, and either dark glasses with UV protection or hats with dark brims. Bright light hurts my eyes and makes my eyesight worse, blotting out everything else around me so all I see is blinding brightness.

My eyes move all the time. It's another part of albinism called nystagmus. Even if I'm staring at a fixed point, my eyes jiggle. I don't notice it myself and often feel like I'm looking in a steady direction, but the constant eye movement makes my vision loss visible to everyone else. I live in the murky territory of visual impairment: legally blind, technically classified as disabled, but not totally blind. I rely on my limited vision, a heightened sense of sound and a lot of guessing to get along in the world.


So, there you have it, in a nutshell.


Currently Listening:
"Colorblind" - Counting Crows - oddly sort of almost appropriate to the post, but not really. Hmmm. Some people might know this song from the "Cruel Intentions" soundtrack of oh-so-many years ago, but I know it from their third album, This Desert Life, which is such a good album, and one I haven't listened to all the way through in years. It always reminds me of the spring of my freshman year of college (as does their debut, August and Everything After) - there is something really atmospheric about their songs, even though they don't really come out with atmospheric music. It's hard to explain, it's like I get a feeling I can't really name or hold onto that almost feels like a memory of a past life in a different place when I listen to them. Somewhere hot and humid with warm wind as early as March, with a certain feeling in the air that I really can't grasp. Time to go listen more fully.


I am color...blind
Coffee black and egg white
Pull me out from inside
I am ready
I am ready
I am ready, I am
taffy stuck, tongue tied
Stuttered shook and uptight
Pull me out from inside
I am ready
I am ready
I am ready
I am...fine
I am covered in skin
No one gets to come in
Pull me out from inside
I am folded, and unfolded
and unfolding, I am
colorblind
Coffee black and egg white
Pull me out from inside
I am ready
I am ready
I am ready, I am
fine
I am fine