How has disability shaped my outlook? Someone asked me this, suggested I ponder the matter. Splendid. Except that it’s a bit like living inside a hurricane. With so much to experience, who has time to ponder?
Let us deconstruct a representative, albeit intense, moment in disabled time.
Bedtime. Accompanied by fatigue. The latter known to induce pilot error. Wheelchairs included. Which explains why in the course of readying myself for bed last night, whipping the chair around to head for the bathroom, I knocked a few things off a small table. Items toppled to the floor, a hat, a wrist splint. Giving me a chance to glance at the table itself. Which was devoid of one key object. My wallet.
It’s worthwhile diverging just a moment from the narrative to note that mine is not an orderly brain. Within months of my emergence from hospital post-injury, I learned one essential quadriplegic fact of life. There is no energy to look for missing objects. One could casually lay house keys here, glasses there, wallet somewhere else…when searching for stuff took little able-bodied time or energy. All very different in the quadriplegic circumstance. There is no bandwidth for such quests. Better know where your basic stuff is. And if your basic mentality is disorderly, find a stratagem. Thus, the wallet on the table. I don’t leave it anywhere else. It is either there or nowhere. Which, by the way, feels quite rigid and dull, somehow not my true nature. But that’s the other thing about living with massive paralysis. Much of your true nature is irrelevant. It’s not exactly natural to spend years rolling through your apartment on rubber wheels. Too bad.
So it doesn’t take a very advanced level of pattern recognition to note the sudden absence of the wallet on the table. Naturally, I had picked up the hat and the splint, carefully replacing both. Revealing how much was wrong about the scene. Wallet. Absent.
Immediate panic. Quick tallying of the cash that was inside it, the number of credit cards, driver’s permit, and fortunately not at this particular moment, passport. Ultimate disaster avoided. Lesser disaster staring me in the face. Possible scenarios really only amounting to one. For I had seen a sort of preview that afternoon. The scene now replaying itself in living color. I had purchased…oh, who knows…some supposedly missing items from my household inventory, at Trader Joe’s. Milk. Hummus. Bran bombs…and, yes, they are explosive. But it to the point, the checker was putting things in a paper bag, giving me some cash back and waiting while I tidied up my wallet. Followed by an extraordinary extra bit. He watched me hang my wallet, which is really a European-type man purse, off the wheelchair control. Yes, it has a leather loop, dangling conveniently, if somewhat dangerously, from a spot by the joystick. Thus, I go about my life. The wallet-cum-purse looping from a spot in which I can generally see it. And the times that the thing has gone bouncing off the wheelchair control, I can generally hear it. Hit the pavement, that is.
That such a thing happens, that something so vital as a wallet can work its way free from a bouncing wheelchair control and slip to the ground…well, this is definite cause for concern. But my solution is to increase scrutiny. To keep my fingers alert, glancing out of the corner of my eye just in case the leather strap has slipped. And, one should note, I have made my way about the Bay Area with this dangling purse/wallet for almost two years. Not to mention London. Gloucestershire. And so on. Imperfect, yes, but no disasters yet. Though several friends have seen the thing slip. Paul, Tuesday morning volunteer, has picked it up from a sidewalk or two. One does have to be careful.
All of which adds up to at this particular pre-bed moment, the certain knowledge of what has gone awry. Mentally tracing back, obviously I had the thing at Trader Joe’s. And, I am almost certain, Peet’s where Jane and I met for quick caffeination round about 2 PM. And after that? Well the trail grows dim, doesn’t it? As everything grows dim around about 10 PM. And now after countless warnings, purse falling off wheelchair, every indication that this leather-strap-on-joystick is a feeble and faulty approach to wallet transport, after all this, disaster.
Action. Time for action. No screwing about. Get going. And don’t fuck up. Quick call to Jane. Just in case she remember something. I leave a message on her mobile phone. Let the adrenal panic settle down just a moment while I look around the apartment. No, absolutely nothing on the table, nor something casually left by the front door or on my office desk. Gone. The purse is gone. Credit cards, cash, my life in a sense. And the major issue now: whether to phone the police or go out and have my own little search. Which would require getting dressed, and having just gone through the task of undressing with one hand and a fatigued body, is most unattractive. Too bad. You fuck up this badly, that’s what happens.
The warning signs. Plenty of times the wallet had slipped off the wheelchair. A fool and his money are soon parted. Another look at the small table by the front door, no. A quick turn back to the bedroom. And something catches my eye, something that swings oddly, barely noted in my peripheral vision. But I am on high alert now, scanning and scrutiny intense and constant. A look backward and, damn if it isn’t there, the purse, hanging off the very back of my wheelchair.
And now, turning the chair around, the wallet drops to carpet. I am certain, absolutely certain that someone, probably Jane, hooked it there for some well-intentioned reason. Perhaps while I was exercising this afternoon, the 4 PM therapeutic stroll. Perhaps it fell, Jane picked it up, hooked it on the first available site, which happened to be on the back of the wheelchair. All plausible. All maddening. All over.
Jane calls back. She has gotten the message. Perhaps also the message that I am blaming her for all this. No problem now, I explain. Sorry. And good night.
But it is not a good night. My sense of disaster has peaked quickly and will likely stay there for a while. Surely I can cool out. What to do but go over the recent events? What lesson? First, what happened?
A forensic reconstruction reveals…that in quickly turning my wheelchair around in the bedroom, which now feels like months ago, not only did I knock a couple of things off the little table…but there was a snag. Literally. Some protuberance, such as an adjustment handle or some knob that tightens the backrest, caught the loop of my purse/wallet. Snagged it, unbeknownst to me. And for several terrifying moments, the thing hung off the back of my wheelchair. End of story.
Hardly. Only beginning, for the night is young, and I am not. And I am vigilant, not only for things that go wrong outside of my body, but for anything messing up inside. Dereliction of duty. Not being on top of things. Failing to be in control. I am a fuck up and ready to believe this always. The legacy of my disability? To be always afraid of things going wrong. To blame myself if they do. To have little patience for the out-of-control. So much of my body and my life being in this category. Too much.