Last week I had to see an eye specialist about my cone eye. I mean, my eye isn’t literally a “cone,” but it’s a fair description. I have a condition called “Keratoconus” which causes my cornea to progressively become thinner and the surface of my eye to bulge out into a conical shape.
(Fun fact, and I say that loosely: Bill Cosby also has Keratoconus and has used it as an excuse in court, claiming he’s too blind to identify any of his accusers. It’s worth noting that experts agree it’s not a blinding disease, though it does blur vision. Also, fuck Bill Cosby)
Though it is a progressive disease, it isn’t endlessly degenerative. It eventually runs its course and the surface stops getting any thinner. But where that end point is and when it will be reached varies for everyone. I went to the specialist to discuss treatment options, which essentially boils down to: getting a corneal transplant if your shit is already too fucked, i.e. stitching a dead person’s cornea onto your eye (!!!), or trying the brand new “collagen cross linking” treatment, which will strengthen the surface of the eye and halt the progression of the disease. If the disease progresses too far, specially fitted hard contact lenses may be required to correct vision.
I don’t know what I’ll need to do just yet, as they have to monitor the changes in my cone eye for while. The doctor did say that my OTHER eye (which, FYI, is only slightly less useless than the cone one) may develop the disease, so they will also be monitoring that one. The one question he and all of his assorted assistants kept asking me in different ways was, “Have you noticed any changes in your vision?”
To which I kept responding with some variation of: No. No I have not. My eyesight has always been fucking terrible, and I can’t tell if today’s level of blurry-as-fuck is any blurrier than yesterday’s. You tell me my eye is a cone? I’ll believe it. But I could barely see out of it before this started happening, and I’ve gotten comfortable with the fact that I’ll never really be able to see out of it, period.
Look, I’m not blind. It’s just that no amount of contacts or glasses will be able to bestow 20/20 vision upon me. And forget Lasik, apparently I can’t even do that with a cone eye. Throws the lasers off or something. So yeah, I squint a bit. I’ll never be a sharpshooter or a fighter pilot or whatever. But thanks to the contacts/glasses I DO have, I get by ok. I’m able to read traffic signs when I’m driving — and that is basically the best I can hope for.
But do you want to know what the really fucked up thing is? When I said that my eyesight has always been fucking terrible, I meant it… yet I spent the first 12 years of my life not realizing I could barely see. Apparently, I spent my childhood developing coping mechanisms to account for the fact that I couldn’t rely on my eyes — and they were so successful that no one figured it out, including myself. It wasn’t until my Junior High math teacher mentioned my constant squinting during a parent/teacher conference that my parents took me to my first eye doctor appointment. There, the doctor tested my sight, then pulled out lenses that would approximate my vision. He held them up in front of my mom, so she could see the world the way I had all my life. Her response?
“Jesus Christ, why didn’t you ever tell us you couldn’t see?!”
And that’s the thing, right? How was I supposed to know there was something wrong with me, if it had never been right to begin with? That teacher, who told her I was always squinting? He also pointed out that I always sat in the back of the classroom. In fact, I sat in the back of EVERY classroom. Because I already knew that I wouldn’t be able to read the board from the front of the room either, so it didn’t matter. I’d squint, and not see a damn thing, and I’d write all my notes based entirely on what my teacher said. And because I got great grades, no one worried all that much.
Still, I must have known deep down that something was wrong, because I had reoccurring nightmares about losing control of my eyeballs. In the dreams I’d try to look at something, really focus on it, but my eyes would just roll around in their sockets wildly. I’d wake up panting, trying to find something in my dark room that I could stare at, hoping to reassure myself that I did have my eyes under control after all. But for the most part, it wasn’t until I got my first pair of glasses that I realized just how much I’d been missing.
I’d never seen leaves on a tree. Sure, I KNEW logically that there were leaves up there — I’d jumped in enough leaf piles to know how the process worked. But to see individual leaves on a tree? All those moving parts just blowing in the breeze? To look at a tree and see more than a green blob?
That was fucking mind-blowing. I started my period before I ever saw leaves on a goddamn tree.
The weirdest thing I discovered about having glasses was that I heard better with them, too. I mean, I could always hear just fine… but I’d routinely ignore sounds if I couldn’t see their origin. Walking in the halls at school, I could only see general outlines and movement. I would unconsciously study my friends’ gait, the way they moved — I’d even clock what colors they were wearing first thing in the morning. That would help me identify their blobs from amongst all the other blobs in the hallway throughout the day. But if someone called out to me and I couldn’t see them? I’d just tune it out. Not like intentionally ignore it. More like hearing it wouldn’t even register to me. I lived in a near-sighted bubble, but that bubble seemed to also dull my other senses as well.
Again, I didn’t realize I was doing this until I got my glasses. And even then it wasn’t until my classmates started commenting on my newfound friendliness that I began to put the pieces together. Suddenly I could see faces, see expressions, tell if someone was happy or sad or nervous — hell, I could finally tell who they were in the first place! So yes, I would look around if I heard something, and then I’d identify that sound, and if it was meant for me I’d respond. But before I had glasses? Apparently everyone thought I was a bit of a snob.
Even though I’ve had glasses for over 20 years now, they haven’t really cured me of those ingrained coping mechanisms from my childhood. I may respond to people talking to me more, but I still go through life in a bubble of my own making. Part of it may be because I still can’t see THAT well, but part of it is sheer comfort. I spent a long time living in NYC, and ignoring the world around me spared me the sight of many random exposed penises. I still write copious notes in meetings, trying to capture everything that’s said. My fight-or-flight response is keyed entirely to movement on my periphery. I’m still fascinated by the things that I can actually see, holding objects close to try and absorb the tiniest details — and part of my appreciation stems from an understanding that even these visual experiences may elude me eventually.
So yeah, I’m not terribly concerned about my cone eye. I don’t expect to ever see perfectly, and I’m fortunate to see however well I can, while I can. It’s all gravy at this point.
But if anyone tries to stitch a new cornea on my fucking eyeball, I WILL LOSE MY GODDAMN MIND.