When I was maybe five years old, my mom was convinced I couldn’t smile right. I studied her mouth as intently as I could, then stretched my own into the same shape. But one lip or the other was always too high up, too pulled down, turned too far in or out. I tried to work these corrections into my face muscles but I could never see my mom’s smile in enough detail to craft my own to look like everyone else’s.
I have albinism, a recessive genetic condition that results in skin, hair and eyes that are paler than pale, and legal blindness. An enzyme called tyrosinase that converts the amino acid tyrosine into melanin pigment is inactive in albinism and this leads to the whiteness and blindness. The visual impairment of albinism, though steady and consistent, is murky territory—I’m too blind to drive or read any of the letters on a standard eye chart except that top “E” but not so blind that the world isn’t intensely, sensually, visual. In the blind community, I am what they call a “high partial.”
Around the same time as smile training, my blindness was a dull but ever-present emotional ache. On the playground, kids ran up to me and called out “whitey” and “snowball” and “ghost,” waved their hands in the air and asked me how many fingers they were holding up, mimicked my ambling eyes. As I got older, the teasing involved spitballs, a kid who jumped out in front of me in the hallways and yelled, “Watch out, brick wall!” and the boys in eighth grade who stole books out of my locker and set them on fire.
Sometimes, in my room, away from the teasing by my peers but alone with the scenes replaying in my head, the ache would erupt into a scalding, white-hot rage. It was so unfair that out of all the people I knew in my family, in school and around town, I was the one who ended up albino. No one saw anything beyond my albinism. I felt like a ghost.
Another sample from my essay “Seeing and Not Seeing.” Here’s the previous excerpt from the same essay. I have to say, this piece above is the very beginning. The essay doesn’t end in this same place or mindset.
- My Face
- Possibilities – Blind Conventions 1
- Reading Faces and Eyes – Seeing and Not Seeing 1
- Ocean Reverie
- What Shade of Purple is Your Eight? – On Synesthesia 1
- The Blindo Diaries: Albinism
*hug* Kids are pretty fucking mean. As for the smiling thing, I thought I experienced every kind of micromanagement there was from my mom, but that’s a new one.
Your vision and beauty is leaping off the page and flying around the universe. Keep it in the air; we need it.
This touched me on so many levels, that I’ve lost my words. You are a gifted writer… thank you.
Awww, thanks so much for reading :) Your words are exactly the encouragement I need to keep writing.
Kevin – yeah, kids can be awful. My original version of this essay actually didn’t have that part in it. I don’t know, it just felt too much like a pity party or something, but I was in this personal essay writing class and the prof and other students encouraged me to dig into it a little more, and it’s real, even if not pleasant. Like I said, the essay ends in a different place, emotionally, etc.
Ms. Nine and Sensuous Inkspiller (still think that is the best name) – all I can say is thank you! I’m glad it touched you. That makes me feel like I’m doing my job!