The last thing that happens every night is that another person puts me to bed. They get me settled, square up the pillows, set what I might need within reach, and ask if I need anything else. The answer’s almost always no, and most of them are out the door before the word finishes landing. There are other people who help me who’d come if I called, in theory, but whether they actually would isn’t something I’ve ever had to find out. One of them, new, lives about twenty minutes closer than my nephew does, and I’m still not sure I’d call her over him. He’d come back in a heartbeat, he’s told me as much, and I believe him. Family does that. He also hasn’t had to in something like two years, and I can count on one hand the number of times anyone has. That’s not luck. Most nights I’m done drinking anything by six thirty or so, hours before I’m anywhere near the bed, and I get most of what I drink in a day into me early, on purpose, so the math works out by morning. Some nights the math is still close. If there’s an hour and a half left before anyone’s due back and it comes down to waking somebody up or dealing with a mess, I deal with the mess. That’s a choice I have, and most nights I don’t even have to make it. What I can do after that depends entirely on the bed.
People ask me a lot of questions about life in a wheelchair. They ask about ramps. They ask about the van. They ask about the chair itself like it’s a motorcycle. Nobody has ever once asked me about the night.
In my bed at home, there’s nothing to grab. Once I’m placed, I’m placed. Some beds have a metal frame I can get my fingers around and actually pull myself over with. Mine doesn’t.
You shift in your sleep a hundred times and never know it. You roll off a shoulder, kick a leg loose, turn toward the cool side of the pillow, and your body corrects it without ever waking you up. I move some too, enough that I’ve woken up completely off my pillow more nights than I can count. What I can’t do is fix it. Fixing it takes an actual turn, and a turn takes something to hold onto. Find a grip and I can do it myself. Miss one and I need somebody else’s hands, and at two in the morning those hands are asleep down the hall or not in the house at all.
So I lie there and do the thing everybody claims they wish they had more time for. I think. At length. Whether I want to or not.
Most folks who work in healthcare or any kind of mobility therapy will tell you that you need to worry about pressure sores. Skin breaking down over the bone because nobody turned me. Hospitals take it seriously enough to put patients on a turning schedule for it, every couple of hours, more through the night. Even that number turns out to be softer than people assume, real studies comparing two hour and four hour turning have come back with no real difference between them, and one review found a good mattress paired with less turning beat the standard schedule outright. Nobody’s actually sure what the right interval is. They just know somebody has to move you.
That’s not my fight, though. Not yet, anyway. I don’t get the spots people assume come with lying still all night. What I get instead is cold feet, and only in winter. Come December I get sores on the sides of my toes, and there’s no fixing that from a bed I can’t get out of. I wear the same socks pretty much year round. In winter they’re heated, whatever it takes to keep my feet from getting cold every hour I’m upright. In summer they’re just socks, no heat, because I don’t need it, except for about half an hour a day when I go outside on purpose, barefoot, real sun, and that alone keeps my feet warm for the rest of the day, every day, like clockwork. Nobody schedules a nurse for that one. I just know it’s coming, and I get ahead of it.
There’s a word that shows up in my head on the long nights. Stored. Not put to bed. Stored. Like the day’s over and I’ve been set down somewhere safe until I’m needed again. That isn’t how the people who help me mean it. It’s just how the arithmetic feels at three in the morning when I’m wide awake and feeling every bit of it, and I want to turn over and can’t find anything to turn with.
It’s the smaller word for a longer list. Getting up because you want to, not because someone’s schedule allows it. A snack at midnight for no reason at all. Deciding, in your own time, to do anything at all with your own body, up to and including the things nobody writes essays about. I’d never actually lined that list up in my head until I sat down to write this one.
I’m not handing you that so you’ll cue the sad violin. I’ve made my peace with most of it. You learn to fall asleep fast, because the window where you’re comfortable is short and it doesn’t always come back. You learn to want very little once the lights are out. You get good at a kind of patience nobody signs up for on purpose.
The world only really pictures one version of this. The daytime one, the chair, the ramp, the blue parking spot, fits in a photo. That’s the disability people think they understand. The nighttime version doesn’t photograph. It’s just hours. Quiet, mostly motionless, uncounted hours that are as much a part of this life as anything I do in the sun.
Nobody’s making a fundraiser out of “missed the grip.”
So the next time you flip onto your other side in your sleep and never even surface, notice it. You’ll do it ten thousand times this year and never say thank you, because why would you. It’s yours. It’s automatic.
I notice every single time mine isn’t.
I’ll be up around six. Somebody comes back, the day starts, and I get to be the guy you see. Until then, I’m right here, more or less where they left me, counting the hours until I get my body back.
