The results of a sleepless night
So they forget. They say things like, “Good weekend?”. They’re expecting the kind of answers another normy would give: “Oh, yes, thanks. Got all my shopping done before 10 on Saturday; re-landscaped the back garden; threw an informal supper party for 25 close friends; and decorated the back bedroom on Sunday.” In comparison with which, my “Actually, yes: I managed to get three pairs of pyjamas ironed” just sounds as though I’m taking the piss.
They say things like, “Wouldn’t it be good if we held this year’s planning day in a hotel, and all stay overnight?”. When I say, “Yes, that’s fine. Have a nice time. I’ll know if you’ve given me the jobs no-one wanted just because I wasn’t there”, they think I’m being a drama queen. They’re not familiar with the minutiae of my life. They either have never known, or they’ve forgotten, that it’s excruciatingly painful for me to eat sitting up at a table. They think it’ll be nice us all sitting round in the bar in a relaxed atmosphere in the evening: they don’t understand that, if I’ve been in a meeting in unfamiliar surroundings, the only thing I’ll be fit for come the evening is lying on my bed groaning and stuffing my face with pain-killers. They don’t get that I would give my eye teeth for the capacity to sit in a bar for an evening: I just come across as a kill-joy. Nul points for team spirit.
So, the more I’ve deteriorated physically, the fewer overtures of friendship I’ve made to those rufty-tufty non-disabled types. Because I can’t do the things they do. Even if I’m going through quite a good patch, and have agreed to go somewhere, I may have to cancel without warning at the last moment. Leaving them high and dry and, frankly, both offended and suspicious. (“She looked ok yesterday”, I imagine them muttering to themselves, in my hardly-at-all-neurotic way.)
So, crips it is. Mostly ouchy crips. Or wobbly ones. Anyone with serious stamina issues. People with a strictly finite supply of spoons. People who, when they’re deciding whether to do something, are thinking about what they’ll have to not do now, just so that they can manage to do that something. People whose every action has serious physical consequences. For whom a good weekend is any weekend which wasn’t spent entirely in bed. (And by “in bed”, I do mean “resting”. I’m certainly not talking about any activity involving two people. You think I’d have enough spoons for that? Sheesh. Boy, have you not being paying attention.)
And then I met Pop. Well, actually, I first met Pop eight years ago. So it would be more accurate to say, “And then I got to know Pop as a friend rather than just a colleague”. And – wonder of wonders! – Pop gets it. And I don’t mean he gets it in that, “Oh, poor you: gosh, it must be awful for you not being able to do things” sort of way: I mean Pop really gets it.
He understands that I’m constantly exhausted. Sometimes so exhausted that I can’t get my words out in the right order. He is the only person I have ever met who can help me out of a chair without hurting me more than I would hurt myself doing it on my own. He understands that there are a lot of things I can’t do, and he doesn’t try to cajole me into doing them. (Note to other normies: that whole cajoling thing is really annoying. You think we want to do nothing? You think this is fun?) He makes sure I take my meds on time, and he bullies me into applying ice packs ten times more often than I would ever do left to my own craven devices. He knows I tend to fall asleep in the afternoons at weekends, and he doesn’t wake me up unless it’s time I was taking some fairly critical meds. He knows when I’m having a hypo before I know myself, and he knows that I’m not myself when I’m having a hypo. He knows I spend almost all of my time in bed; he knows I’ll never go on holiday again; and he knows that I don’t lie about the levels of pain I’m experiencing. He also knows that I live in the Liverpool equivalent of the Oklahoma dust bowl. With added cobwebs.
He is completely unfazed by any of my impairment-related gubbins, and he genuinely sees me as me rather than as an amusing combination of symptoms. He is not living out any childhood doctors and nurses fantasies at my expense: he’s just completely ok with the fact that, if you want me as a friend, you’ve got to take all the impairment crap on board as well, but that’s not a big deal.
It’s a long time since I’ve got this close to a normy, and I worry that I’ll cramp his style. That my own physical limitations will end up being imposed on him. That he’ll feel obliged to give up doing the things he enjoys out of a misplaced sense of solidarity with me.
Just because I’ve had to get used to this way of living doesn’t mean I’d willingly impose it on anyone else, or that I don’t recognise how tedious it is. Hell, it’s tedious even for me, and I can’t run around and do loads of other things. Imposing it on someone with no physical impairments beyond a tendency to puff a bit if forced into a gentle run would be to imprison him for a crime he hasn’t committed. I’d no sooner do that than cage a thrush so that it would sing for me. Making someone else miserable just so that they’ll be company for me strikes me as being quite extraordinarily self-defeating behaviour even if I didn’t feel any guilt about making that person miserable. I have cats for company, and they’re more than happy to curl up with me for another few hours of resting. I mean, I may have my faults, but being uncomfortable to lie on isn’t one of them.
No, normies should definitely be out and about doing normy things. Except, therein lies the rub. I thought I’d foreseen all the problems of buddying-up with a normy. I’ve fretted and worried about being a burden, and about being perceived as a burden. But you know what? There’s something I hadn’t foreseen.
I thought the reason most of my friends are ouchy crips is because they get it. I really thought that was it. But that’s not it. Or, at least, that’s not all of it. I know that now. I know because Pop gets it.
I’ve realised that the other reason most of my friends are ouchy crips is because their lives are like mine. Some have it slightly better, some have it quite a lot worse. But none of them live like normies. And I’d forgotten. I really had forgotten just how much normies can cram into one day. Ok, so I’ve seen people on the television doing stuff, and people in books being ever so energetic, but hell: everyone knows they’re not real people. They’re just pretend.
In an unconscious self-defence measure, I just stopped thinking about how non-disabled people live their lives years ago. I blocked it out. Completely. People go away on holiday? Really? Oh, great: well, that must be nice for them. But I don’t need to go away to be happy. People go out for meals, you say? How very odd. Still, whatever floats your boat…
And then Pop came along. And, trust me, if you talk to a normy for a couple of hours every day, details of normy-life are going to filter through eventually.
And you know what? It sucks that I can’t do the same things that he can. It really sucks. I’m not sorry I was injured. I genuinely do think I am a better, happier person for having impairments thrust upon me. But it’s come at a cost. And having Pop around means that I’m much more aware of that cost than I’ve been for a very long time.
Does this mean I don’t want to be his friend any more? No. Does this mean I resent his norminess? No. Not for a moment. Am I coping well with being reminded of what other people can do that I can’t? Er, no. Not so’s you’d notice. Not unless bursting into tears at the unfairness of life constitutes coping well. Which I rather suspect it doesn’t.
So, there you go. Pal up with a normy, and the risks may be greater than you’d anticipated. It’s not just about them understanding what life is like for you: it’s also about you being reminded of what life is like for them. Normies aren’t the enemy: I’ve never thought that, and I don’t think that now. But a normy’s got to be a bit bloody special to make those stark reminders of what you can’t do any more worth putting up with.