I wake up, and I’m hit with a pang of fear. A voice in my head says “It’ll be okay whatever happens.” I open my eyes to flashes of neon green, patches of darkness, and bright white lights. I know the room is pitch black, these lights are just in my eyes.
Every morning, I wait for the lights to settle and the darkness to fade. Sometimes I stand up too soon and immediately regret it. It takes anywhere from a few seconds to a few minutes to adjust. The point is, eventually my vision settles enough for me to function.
The creeping fear comes from knowing that some day that might not be true. Living with a degenerative eye condition means my retinas are weak. They could give up at any time. Or they could not. No one really knows. I go through my days being stalked by the green flashes shooting into my vision. I panic at work when I see dark patches out of the corner of my eye. Was it someone going to the coffee machine, or my retina letting go?
Maybe it sounds dramatic. Sure, anything can happen to anyone at any time. “You could walk outside and get hit by a car,” people comment when I bring up my fears. We’re just humans after all. Life is unpredictable. I do try and stay in the now, and I’m good at embracing the positivity generally. But this isn’t about that battle.
This is about seeing through my disease and being keenly aware that barring a medical miracle; this is the best it’ll ever get. It’s downhill from here, but the timeframe is a huge unknown. When I was first diagnosed my mother, and I lived by the saying, “One-eyed bandits don’t make plans.” While they operated on my right eye, I relied on my left and vice versa. I could never plan a day or two in advance because no one really knew how long they’d hold.
I was sitting in a graduate class one night back in 2010 when I suddenly saw darkness in the upper right edge of my vision. I’d had my first eye surgery just weeks before. The darkness was like a curtain…falling…falling…falling…blink. Gone. Then falling again. I put my hand over my right eye and kept writing. “Are you okay?” my professor asked. It was a small class, maybe ten students. She’d noticed my struggle. “Yep! Just small handwriting on the board,” I replied brightly. I didn’t want to tell the truth, but I didn’t want to offend her tiny printing either.
My mom was waiting to walk me home. Yes, she waited outside of every class day or night to walk me home. I was getting my master’s come hell or high water. That night, we didn’t go home. We went to the emergency room. As I suspected, I was watching my retina redetach. I saw my surgery fail. I was watching myself go at least partially blind. I was scheduled to be readmitted first thing in the morning for yet another brutal effort to save some of my eyesight. All of my plans went out the window again. That’s when I really started taking the one-eyed bandits motto to heart.
Nine(ish) years later that is still the case to some extent. I do make more plans now, but the fear is still there. The knowledge that the curtain could fall and I could be back in that hospital gown waiting for fifth eye surgery sticks in my brain. Comfortably lodged there like a constant reminder I’m just playing house until reality hits. I use that fear as motivation to travel, to live in Japan, to work as hard as I can while I can still see and may need to shift my career path a bit.
There’s no way to rest or put the fear aside. Typing this, I see two computers — one blurry ghost image hovering over the sharper image. Watching television is the same. I’ve seen Fyre Festival employee’s heads floating fuzzily in my armchair next to the tv while I watch Netflix. So I can’t exactly forget what’s looming. All I know is that it is…or isn’t.