I Don't Know Where To Begin

I'm going blind from an eye disease called retinitis pigmentosa, yet still I want to write. How crazy must I be to want to pursue a profession in a field where even those who can see are often forced to wait tables to support their family? But I suppose saying it on paper at least gives me some clarity. For those who don't know, retinitis pigmentosa is an eye disease that causes the rods and cones in my retina to die, sometimes quickly, but most often slowly, very slowly. My diagnosis came not from a retina specialist but from a nuero ophthalmologist in the form of medical jargin. And it stated, “Bone spicule-shaped pigment deposits are present in the mid periphery.” The translation or in laymen terminology, my photoreceptors were degenerating or not functioning properly. And this meant that things were disappearing in the front of my eyes, and on both sides too. The results were confirmed by an electroretinography test, which involved using a machine that relied on a contraption connected to contact lenses which were placed in my eyes and measured my eyes response to a variety of light stimuli. Prognosis, you wouldn’t want to be crossing the street with me behind the wheel, odds are I’d see you only when I hit you.

Truth be told, I knew something wasn’t quite right before that piece of paper ever hit my fingertips. I knew before the neurologist sent me to the nuero-opthamologist, before the ophthalmologist sent me to the neurologist. Before I started bumping into green metal poles 10 feet high positioned on the sidewalk alerting drivers about alternate side of the street parking. I just hadn’t figured that the condition was irreversible or perhaps I had known it all along and that was why I read The Man Who Mistook His Wife For A Hat so many times.

My first inkling that something wasn't quite right came one night while I was outside playing with other kids in my neighborhood. They weren’t my friends, not because I hadn’t tried, they’d probably smelled my desperation like the lingering scent of some badly cleaned up poop on the side of the road. I was eight: Pink bike, two ponytails, and lenses that hadn’t been purchased by someone who cared that coolness was judged by the thickness of ones’ lens. The kids in my neighborhood were watching a cat intently as it ran across several front yards darting around shrubs and trees in pursuit of a rather large dog. I on the other hand had no idea what was going on with the dog and although I joined in their laughter I felt like an outsider. I couldn't see the cat, and yes it was really there. It would be years, 27 to be exact, before I would understand why.

I don't know how to begin so I guess I'll begin in the thick of it.