July 10, 2016

Lost on the Sidewalk


As diseases go, retinitis pigmentosa is a sneaky little bastard. The vision can remain stable for a few years, lull you into thinking okay, thatís that, itís not going to get any worse. Then one morning you wake up and ka-pow, you realize youíve lost about a quarter of the vision you had the day before.

††††††††††† Back when I still had a bit of clarity, could still see things like a TV screen or buildings or cars, the sudden drop was immediately apparent, but I took it in as much stride as I could, assessing what was left and making any necessary adjustments. Then Iíd carry on. Over time and counterintuitively, the more I lost, the longer it took me to notice Iíd lost more.

††††††††††† It was some years back now, canít recall the exact date, when I lost pretty much all detailed vision. Not only could I no longer see images on the TV, I could no longer see the TV. I found there was no longer any point in turning on the desk lamp next to my computer, which used to help me discern the keyboard some. Color faded into slightly different shades of gray. What I had left was light and shadow, but at least that was enough to help me navigate. On bright days, the windows at both ends of the apartment were intense white smears amid the darkness, but they worked like lighthouses as I used those smears to get my bearings and steer clear of the furniture. At night, we had a few strategically-placed standing lamps that served the same purpose. Along with the cane, out on the street, I learned to read the contrast between the sunlight reflected off the sidewalk and the shadows cast by trees and buildings to find my way to the store. I counted on repetitive muscle memory to tap my way around the touch screens of my bankís ATMs without too much fuss. Most importantly, my talking (some might say mad and jabbering) computer allowed me to not only continue working more or less normally, but even to do the requisite online research. There were definite limitations to the latter, but I could usually find a way to work around those. Everything was fine.

††††††††††† Then while visiting my mom in Green Bay two months ago, I decided to take a walk. It was a simple walk, one Iíd taken a thousand times when I lived there. Just a few blocks straight up the street to Webster Avenue and back. No turns, no detours, just a fifteen minute up and back to stretch my legs, loosen my back some, and get reacquainted with the old neighborhood.

††††††††††† As I tapped up the sidewalk with the cane using the grass of the yards to my right as a guide, a small fear began nagging at me. Getting up to Webster would be no sweatóit was the only busy street in the area, so once I heard the traffic, Iíd stop and turn back. It was the getting back that suddenly seemed the tricky part. It shouldíve been so simple, and always had been. My mom lived in the last house on the left before the corner at the bottom of the hill. But not being able to see the houses, not knowing how many driveways there were between Webster and the corner, and furthermore remembering the corner wasnít exactly a corner anymore (since the city installed the roundabout, the sidewalk now just gently arced to the left before heading down Baird Street), I didnít know what I was going to do. With no cell phone, I couldnít exactly call my mom and tell her to watch out the window for me. Iíd just have to wing it, try a little hit and miss, maybe walk into Naymannís or Fiddlerís or Frazierís old house and hope whoever was living there now didnít shoot me. If they didnít, Iíd at least be able to ask them where the hell I was.

††††††††††† In the end I found my momís house again by deliberately overshooting, following that sidewalk arc onto Baird, then slowly working my way back until I hit the first driveway. I didnít think too much about it. Iíd spent seven hours on planes, hadnít been there in a year, and was just a little discombobulated, is all.

††††††††††† But after returning to New York, other things began cropping up. While running simple errands, two-block trips to the same stores Iíd visited three or four times a week since moving here, I found myself getting lost and confused. I stepped off curbs in the middle of the block, and even when I did hit the corner I didnít notice, wandering straight into oncoming traffic. All my earlier navigational landmarks and tricks seemed to have vanished. The ATM screens at the bank were now completely black, and muscle memory alone was no longer enough to manipulate them. At home, the screen reader on my computer wasnít nearly as thorough as it had once seemed, and trying to look up the simplest bits of information or scan the newswires online suddenly became a sweaty and stressful ordeal.

††††††††††† I had an answer for everything. I was getting lost because I was either too hungover or too distracted thinking about other things, and so was not paying careful enough attention to where I was going. The bank was in the annoying fucking habit of reconfiguring their ATM screens every few months, which explained why I could no longer find the button I needed. Iíd just stop by with Morgan sometime and sheíd tell me what was where. And as far as the computer went, I blamed the inevitably chowder-headed trajectory of technology, another cheap and underhanded push to force me to spend money I didnít have on a stupid upgrade that would only make everything worse.

††††††††††† That was all.

††††††††††† Bad thing was, and Morgan noticed before I did, I was getting frustrated. Blindness had always been an annoyance, like a hangnail can be an annoyance, but little more than that. Any frustration I felt at not being able to see something or do something was slight and fleeting. There was no getting around it, nothing that could be done, so frustration was pointless. But now I found myself early one Wednesday morning pounding on an ATM in an empty bank because it wasnít responding the way I thought it should. Only slowly did it dawn on me that at some point, likely around the trip back to Wisconsin, the eyes had slipped again, the fuckers. And when I didnít think any more slipping was possible, given I only had light and shadow as it was. Guess thatíll show me.

††††††††††† Still, recognizing that, the frustration began to ebb. No point to it. No, as per usual the thing to do now is step back again, determine what the new parameters are, and work around them. Though I may still punch the occasional ATM, just on principle.


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