The results of a sleepless night
Normies don’t get it. I’m not saying they don’t try, and I'm not saying they're at fault, but they don’t get it. Most of them only see me when I’m up and about. They can’t even conceive of the hours and hours of resting flat I have to do in order to spend one day up and about. I’m not weeping and wailing and rending my garments when they see me, and I “don’t look disabled”: I look like a fat woman with a stick. Hell, some of the time I don’t even have the decency to limp so as to conveniently remind them how weedy I am.
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.
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.
The Editor
posted by
Lady Bracknell | Tuesday, May 08, 2007
32 Comments:
"...Making someone else miserable just so that they’ll be company for me..."
If you can do that - actually FORCE someone to hang around with you, even though it makes them miserable - then I am bloody impressed. You may tell Derren Brown to pack up and retire, since your ability to MAKE people do things against their will far exceeds his...
Alternatively, we could categorise those "friends" who buggered off out of our lives shortly after sending the "get well soon" card as being, well, prats, really.
The normies who still come round, who are happy to make the cuppas and sit in the dark and have a quiet chat for a half-hour, who although they understand that you're really unlikely to accept an invite to join the group for dinner/bowling/cinema, still ask and are prepared for the occasion when you are having a good week and say "yes"... those, we can categorise as real friends.
And really, if they're sensible enough for all that, then they're quite sensible enough to make their own decisions about how and with whom they spend their time.
(PS see how I know all this stuff, yet have trouble convincing myself of it in regard to my own situation?)
Best of luck for a better night soon.
"If you can do that - actually FORCE someone to hang around with you, even though it makes them miserable - then I am bloody impressed."
Ah - clearly you have never had the misfortune of meeting the woman whom I narrowly avoided having as a mother-in-law.
As mistress of manipulation, and queen of passive-aggressive behaviour, she really could make people (well, members of her own family at least)stay with her and share in her misery.
Her misery did love company. Which is not an attribute I understand. I'm naturally fairly solitary at the best of times: I certainly don't want people around me when I'm miserable.
Yes. It was a bad night. Sometimes things all sneak up on me at once. It'll be better tonight, I'm sure.
(One of the benefits of being middle-aged is that you've had time to recognise the patterns in your own behaviour and reactions and to learn that, despite compelling evidence to the contrary at the time, you actually do get over things.)
Erk! So far I'm on a count of one mother in law (no narrow avoidances, they got me, although I escaped within a year), and she couldn't have manipulated her way out of a paper bag. Which is just as well, since her major desire seemed to be for my teenage self to produce some grandchildren. However, if all continues well in my current relationship, then for my next m-i-l I face a maths teacher. May god have mercy on my soul.
Ah yes. My Normy friends who don't get it. Sometimes I hate them. Sometimes I go clubbing with them. Clubbing requires many, many spoons. I only go clubbing when the dishwasher's done a fresh load of spoons. I could stretch this metaphor more, but you get the point.
I still love them, but it's annoying, and as my supply of spoons decreases, I suspect I might begin to see them less.
Anyway, the Normies in my life who are like yr Pop tend, I find, to be the ones who have lived with me. Housemates have no choice but to see me when I am at my crippiest, when all my spoons have fallen down the back of the sofa.
And they get it, and still choose to share a house with me, because they like me.
It has to be said that I don't count many mountain climbers among my Normie friends, generally they are quite good at picking spoon-preserving activities, and consequently I don't find myself jealous very often.
Sometimes I do. But sometimes they are jealous of me.
I *do* have larger breasts than most of them.
K
x
Dear Editor
I too have larger breasts than most of my Normie chums.
Strangely, they don't generally seem to be all that jealous ;<)
Dude
Oh, no fair! I was going to mention that... :-(
I haven't got a good boob joke of my own, unfortunately, so I'll simply say that I hope very much that The Editor had a better night last night.
I'm very embarrassed to admit that I have, in moments of thoughtlessness during which I thought I was being kind and sympathetic, used phrases like that must be awful for you, or I can't imagine what I'd do in your situation. The former is insultingly obvious and the latter completely untrue. I certainly can imagine what I'd do: I'd be angry, I'd be frustrated, I'd worry about about burdening my friends and making them miserable, and I'd hate the fact that they wouldn't understand, really, what life was like for me.
I have a friend who's been trying to recover from liver damage for the last year, and as such much of what you've said is familiar to me. I didn't always get it, particularly not at first, when my friend was reluctant to discuss her health issues in much detail. I am trying to get it. Even now that can be difficult, when more often than not I want to believe that she's not really been in the kind of pain which I know she has been, and further that it's impossible for her to become anything other than Better Again. Similar to the way she worries about burdening me with her "complaints," as she calls them, I worry about burdening her with my fear.
"Normy"-- that's an interesting word. It suggests a sort of blissful, boneheaded ignorance on the part of people like myself regarding persons living with disability or illness-- which I wouldn't say was inaccurate in the least. And I suppose I am a "normy," though I've certainly never called or thought of myself as such. Suddenly finding the pejorative wedged between myself and persons living with disability certainly dishes up a short, sharp lesson in how it feels to have terms like "crip," "retard," or "mong" directed at oneself-- a very valid point indeed. Yet there's also been a line drawn, one which appears to render all other points of common ground insignificant. I'm not sure I like having that sort of line drawn between me and my friend. I'm shy and awkward with people in any case; an awareness of such a distinct delineation between myself and another group leaves me uncertain as to how to behave, whether I am welcome, or whether I have any business saying anything at all. But-- then again, then again-- that's rather the point, isn't it?
Please note that none of this is to suggest that I take offense at anything you've said. It's just given me some troubling food for thought. Which I always see as a good and necessary thing.
Yes, thank you kindly for asking, I did have a much better night last night. I was fast akip by 9pm.
I think what I've said about the majority of normies is open to misinterpretation. I'm sure I've expounded in the past - although I currently haven't the strength to trawl through my entire back catalogue to find an example, so I could be mistaken - on my theory that the human brain isn't capable of conceiving of what constant pain must be like. I think there are defence mechanisms which prevent people from being able to imagine it if it isn't happening to them. So I have no expectation at all that anyone should be able to get it, and thus no criticism at all of anyone who doesn't.
(My criticisms are reserved solely for people who don't seem to be able to remember that I am in pain all the time, and that there are things I can't do.)
A lot of the draw of having numerous ouchy crips as friends is that you never have to explain. Because they understand. Because it's the same for them. It is beyond tedious having to explain your symptoms to people over and over again. Not only is it tedious, but it actually focuses your mind on how bad things are. And that is not a good thing.
But bear in mind that I'm speaking from a very different scenario than that between you and your friend. I'm talking about crips who have been crips for a long time, and normies who have known them for an equally long time. That's a long way from a scenario in which someone is relatively recently unwell, with something they haven't yet come to terms with themself, and their friends are in shock and desperately trying to find some way of alleviating the suffering.
Plus, of course, I've semi-deliberately over-stated the not-getting-it in order to increase the contrast between average normies and Pop. I did actually consider adding something to the effect that there are really quite a lot of normies who get it really rather well once it's been explained to them, and that the difference between them and Pop is that there doesn't seem to be any need for the explaining bit with him. But that would have spoiled the flow of the blog entry, so I left it out. For which I am now very sorry, as that omission has caused you unnecessary worry and concern.
What you say about "normy" is interesting. I can only speak for myself, of course, but I don't use it as a pejorative term. To me, it's just a useful, slangy shorthand for those times when I need to distinguish between crips and everybody else, and "non-disabled" sounds too formal, or too technical.
I've got nothing against normies. In fact, in some ways, what I've tried to bring out in this post is the reason why people with similar impairments stick together. That it's not about normy-hating at all. It's just about people's expectations of what you can manage, and acceptance that, if you say you can't do something, it's because you can't.
The Dude and I were discussing this the other day. He's off to a conference next week. He knows that his colleagues will want him to go out for drinks with them in the evening. He knows that when he tells them he can't, what they will hear is something different. They'll hear someone who is a bit weary, and is not sure whether he can be bothered, but who will probably come round if we all just keep on asking him.
Hence my dig at those who cajole. It's bad enough missing out on the social aspects of these things without knowing that your colleagues think that you've chosen not to attend.
Once the day's spoons are gone, they're gone. And life is a hell of a lot less frustrating and exhausting if you're with similarly spoon-lite people who understand that spoons get used up at different rates on different days.
Or if you're with Pop, of course ;-) (Er, I may be just the teensiest bit biased here...)
Yes, that 'spoons' analogy is a very good one - never thought of MS that way before. Gradual loss of 'normality' is insidious and bears thinking about... I certainly didn't realise what using up 'spoons' meant until I had to do so myself.
Both my girls are 'normal' and go about their daily business as any person without a disability would. I envy them that, and I'm also glad that I got the condition later in life. I've had to adjust in a lot of ways, including being unable to participate in activities that once gave me great pleasure, like going on holiday. But it has given me an insight into what it's like not to be 'normal' any more.
I always read your blog with interest - the last entry was particularly moving. The Editor, despite having to count spoons very carefully, should be happy that at least one 'normy' understands her. That's one more than some of us have!
Angie xx
It is indeed. Which is why I appreciate it so much.
Pop is indeed the very best of Pops. :) Would that someone might wave a magic wand and grant everyone a friend like that! Or, better still, make us all that good.
I think my comment rather open to misinterpretation as well; I fear I was not as careful in my tone as I thought. I do not mean to accuse you of levelling unwarranted criticisms at the undeserving, of having unrealistic expectations of others' level of understanding, or of "normy-hate." I think you are absolutely right on all counts; I would agree that cajoling, in particular, shows an unreasonable level of insensitivity to the cajoled-- particularly, as you say, when the illness is still "new" (though I don't doubt it grates just as much when the illness is "old").
It's more that I'm concerned with with terms like "crip" and "normy" themselves. I'd never suggest that the use of either is unacceptable in all instances-- I dislike (as may of the BADD participants clearly do) the idea of "approved" and "prohibited" language. I can see, also, the convenience afforded by such language: I have similar trouble with the forced formality of terms like "non-disabled," even "disabled," for that matter. For the present I've latched onto "persons living with disability/illness," which seems not to offend most people-- though it's awfully wordy, and has its own awkward, forced formality.
Used in a pejorative sense or not, however, such terms are by their nature implicitly divisive-- them and us. Language reflects, I feel, to a great extent how human beings think-- and it's thinking in terms of division, I suppose, which I find troublesome. We can each only be who we are, after all, regardless of our experience with illness or disability. But I do acknowledge that perhaps I protest too much: what is one supposed to do when the circumstances require us to think of us us those who are different from us, and to acknowledge that our needs are markedly different?
That said, the spoon analogy was one of the most powerful things I've ever read. Perhaps spoon reservists and spork users? Nah. That's just silly.
And now I will shut my enormous, yammering trap. I've taken up more than my fair share of space here. :)
Jess,
You'll always be welcome here, and you can have as much space as you want/need/can fill. I mean, have you ever known me be brief, concise and to the point?
The whole spoons thing is great. Not least because of its value as shorthand amongst those of us whose spoon-supply is both diminished and diminishing.
But also because, for some reason, it works. It gets through to those people who persisted in assuming that you were just over-tired, or that you were saying "I can't" when what you meant was, "I don't want to, but I'm going to pretend it's a crip thing so as to spare your feelings".
Dear Editor
Might I just add that Jess has hit the nail full on the head with, “Language reflects, I feel, to a great extent how human beings think.”?
This is why we social model activists are so preoccupied with using the “proper” words and understanding their meanings, isn’t it? It’s not just a debate about “tomayto” versus “tomarto” when we rile against phrases like “people with disabilities”. If that’s what people say, then chances are that’s also what people think.
Instead of “crips” and “normies”, would Jess prefer “raspberries” and “walkie-talkies”?
No, I thought not ;<))
Regards
Dude
Great post your ladyship...I'll be linking to that at some point (when I summon up the energy to do a blog post myself!)
Is there a disability / big boobs link? It needs to be researched I think. A fair number of my friends ARE jealous of mine, it has to be said - with elaborate cantilevering and scaffolding, they enter the room approximately 5 minutes before the rest of me.
I've taken to calling the normies either "currently able-bodied", in recognition of the fact that most disabilities are acquired, often in later life, or else "muggles" - first encountered in Harry Potter, but with a general meaning of "an ordinary person without specialised knowledge".
Great post, really with you on many fronts. I'd heard about the spoons thing, but thank you so much for linking to where it came from. It's such a valuable tool (ugly word to use for such a lovely piece of writing) for tackling what day-to-day life is like, particularly when we are talking things over with those we really care about, those we want and need to understand. I haven't tried using it yet. Does it get through to people?
I mean, I may have my faults, but being uncomfortable to lie on isn’t one of them.
Dammit, see, that's one of mine.
I'm kinda broken. Mostly head stuff, but often that leads to body stuff - though I can bound up a mountain if I haven't recently repeatedly stabbed myself in the leg.
I live with a friend who is also kinda broken. Tourette's, aspergers, a touch of self-stabbing on the side.
We live with a third person - fully functioning. Never inclined to off herself, not even on any bloody medication.
As Katie said - living with people is what makes it real. Until you live with someone with tourette's or aspergers or DID you have no idea what the condition is like.
Our normie housemate is, thank god, fitting in fine - because most wouldn't. And yes, it's a drag sometimes to see how much more I could have achieved in my life at this stage if I hadn't been busy going bonkers. She's had a lot of adjusting to do - but what makes it really work is that she asks questions. She doesn't assume that she can guess what it's like to not be a normie. She asks us straight out, and accepts our answers as being true for us.
I'm not sure us nutters are allowed to lump ourselves in with the crips, but I'm certainly not a normie.
I hadn't realised until I read this post (from POTW) how difficult it can be for me to maintain friendships with normies. When I'm unwell I avoid my normie friends - and I assumed it was out of insecurity, but I can see now that some of it is also that I find it hard to be confronted with how straightforward their lives are.
Thanks for the night ramblings,
Sx
Seahorse,
I don't say it'll get through to everybody. I mean, I wouldn't even attempt it with my parents.
But if you've got someone who clearly wants to have a better understanding, but who just can't get his or her head round what things must be like for you, then yes: it's definitely worth a go.
Funky Mango,
I quite like Temporarily Non-Disabled myself. Because of the element of threat... ;-)
As the Dude says, I also have a weakness for "walkie talkies".
But I should stress that that's only on those rare occasions when I'm in 100% crip company and one of us is fed up with something a normy has done, so we have a go at all normies in a spirit of solidarity.
Which, I must stress, is something we do in fun; something we don't actually mean; and something which is never, ever directly targeted at any of the lovely, lovely non-disabled readers of this blog.
(Exit Editor, stage right, desperately hoping she got away with that.)
"I'm not sure us nutters are allowed to lump ourselves in with the crips, but I'm certainly not a normie."
Sadly, there is a lot of prejudice from physically-disabled people towards people with mental health problems, neurological differences, etc. Prejudice which I consider to be both inexcusable and extremely damaging to the overall fight for equality. (See Mr Chuckles' BADD post for some rather terrifying stats on this issue.)
But not all physically-disabled people want to exclude you guys from the party: I certainly don't.
I've had a couple of lengthy bouts of clinical depression myself in my time (the second of which was very nearly fatal - and, yes, I do still have the self-harming scars), and I know which kind of impairment I'd rather have.
And I also know that, for all that normies don't really get what it's like to have physical impairments, an awful lot of them really don't want to get what it's like to have anything psychological. So, yes. I would expect you to struggle even more with normy friendships than I do.
When I wrote this post, I really had no idea how many chords it would strike with other people. I'm very pleased if what was a painfully-achieved realisation for me can be of help to other crips.
Thanks for stopping by.
thanks Lady B! Chuckle's post was shocking indeed - in particular the attitudes of people you would hope might have more empathy and understanding. Unfathomable really.
I don't know that I could begin to choose between different kinds of disability so I won't head in that direction.
I do think that either kind can give you great insight into what other people are living with. If I choose to wear long sleeves and trousers, and I'm not in the middle of an episode, I can pass for a normy. But I also know precisely how it feels to have people draw their children away from you in a swimming pool changing room, or have teenagers shout 'freak' at you because you're wearing a tshirt.
I have the luxury of periods of being well, and the uncertainty of knowing that things can go pear-shaped quickly.
I am lucky that I usually have quite a few spoons, but when I'm running short, the first thing that happens is that I lose count and over estimate. I use my spoons like they are never ending and then find myself with none left in an emergency!
This post of yours has made me think about the combined difficulties of conspicuous and inconspicuous disabilities. I don't know whether it's harder to cope when people are writing me off because they can see, or denying my experience because they can't. Do I feel more hurt by the friends who are scared away by the extent of my problems or the ones who like to pretend that I am just like them? (And want me to pretend that too).
In the end - the result is the same. You don't really have a relationship with someone who can't meet you where you are today.
Sx
(ps - I'm glad you understand, but sorry it's from such personal experience. Depression is a bitch).
"I do think that either kind can give you great insight into what other people are living with."
Yes, I agree with that. That's a very good point. I can never really know what it's like to have dyslexia. But I've discussed it with people who have got it; I've thought about its impact. I do know it's very much harder to live with than I casually assumed before I was disabled myself. I have a nasty suspicion I really was one of those people who say, "Well, surely that's what spell checkers are for?", and who would have resented users of voice-activated software for interfering with my precious concentration.
I'm about to slip into Social Model Lecture Mode now, so look away if you really can't bear it:-
I can't really know what it's like to have impairments of which I have no personal experience. I can ask questions. I can consciously avoid making assumptions. I can discuss probems. But nothing alters the fact that I am not sharing that experience.
However, I do know what it's like to be disabled. That bit I can understand, and I can empathise with effectively. To me, a disabled person is someone who experiences barriers to full participation in society because he or she has an impairment (or more than one). It's the inequality which we share, and which we want to fight against.
Which makes it all the more depressing that not even physically-disabled people want to live next door to someone with (whisper it) schizophrenia.
The question of whether it's preferable to have an immediately obvious or an invisible impairment rages on and on, and will never be firmly resolved. There are advantages and disadvantages both ways. I will say that, from what I've gathered, there are very few people with obvious impairments who don't envy your and my ability to pass as "normal" some of the time. On the other hand, they don't have to put up with disbelief and suspicion from all those amateur doctors who are absolutely convinced that they can tell whether or not someone is disabled just by looking at them.
Which is why I am very much liking your conclusion that "the end result is the same". That people not taking you seriously = people not taking you seriously whether they're patronising the hell out of you because you use a wheelchair, or whether they're refusing to believe that your health problems are both genuine and serious. Because, in both instances, that is explicit disablism.
I should perhaps turn off Rant Mode now while there may still be some people still reading, and turn my attention to my next meds dose....
Great lecture.
All of this is of course reminding me why I love blogging so much. I have forged fantastic friendships with people of all kinds, who get to know me on the basis of my own description of my own experiences.
I can opt out when I don't have enough spoons for writing.
I would go so far as to say that my blogging friends - many of whom are whole-life friends too (I don't like the real-life distinction, because blogs are real lives! ) - are the most accepting of me as an entire person.
What is particularly wonderful is that my relationships with other bloggers have raised my expectations of the other people in my life - including my family.
Group hug? (a very gentle one, suitable for ouchy people, as I am currently quite ouchy myself).
Sx
Ok. But it'll have to be a very careful one... ;-)
Thanks for this post - nice articulation of many of the frustrations but in a more whimsical and less, "let's maim them" than I could have done (still got that bag o anger) -- greatest frustration is when norms ask if you can meet them or go here or do lunch....in three days.....at 2 pm? When you only get to "do" maybe 5 things a week, how exactly can I say if I will be physically able to in three days.
Actually, I would say worse than that is when you are there, and then go into physical distress and everyone pretends it isn't happening.
I will try finding a normie who gets it: or at least can let me be angry (I am always smiling now...because if I get someone mad, maybe they will leave and I won't get to eat....or have my chair brought to me).
Do you find you have artificial emotions around normies? Always chirpy?
Sorry, your blog articulated what I had been scared to articulate myself..so got revved up.
Quoth Dude:
Instead of “crips” and “normies”, would Jess prefer “raspberries” and “walkie-talkies”?
No, I thought not ;<))
Actually, "walkie-talkies" is fantasic. Sure, I'll go with that. :D
If we agree that language reflects how we think, then we'll likewise agree that my comments say a lot more about me than they do about The Editor, or about implied versus actual meaning in language. I think now that I rather let those terms distract me unduly. The worst part being that I never, in my responses, once mentioned what a fine post this is, and how much I actually appreciate-- given my experience regarding my aforementioned friend-- what The Editor has to say in it. :(
"Do you find you have artificial emotions around normies? Always chirpy?"
Hmmmmmmmmm. Not sure it's so much "artifical emotions" as consciously not mentioning certain things more than is absolutely necessary.
Ok. I'm an ouchy crip. (I'm also diabetic, but first and foremost I'm ouchy.) Normies rather suspect that pain hurts. (Normies are not wrong.) Ergo, the standard initial normy response to an ouchy crip is one of pity. Which means that, if I talk about pain, it appears to them as though I'm angling for sympathy. Because normies have an emotional response to pain. Even if they don't think I'm actually fishing for sympathy, sympathy will still be their primary response. I can not be an equal in a conversation with someone who "can't help" but feel sorry for me.
If I am with other ouchy crips, though, I can talk about pain. Now, contrary to what people might think, ouchy crips talking about pain is not a "pity party". (God, I hate that term...) Pain is a big part of our lives, and we want to talk about it just as much as we would about any other big part of our experiences. We are not sitting around crying on each other's shoulders: pain has become (mostly) an unemotive subject to us. But that doesn't mean it doesn't hurt.
So, yeah. There's really very little to be gained from bringing up subjects which make everybody around you feel uncomfortable. That's appropriate sometimes - if you're on an awareness-raising kick, for example, or if you're just heartily sick of having that aspect of your life completely ignored - but it certainly doesn't make for a fun evening.
But I can't imagine how awful it must be for crips who only know normies. Imagine: never, ever being free to talk about the things that matter to you. Accepting the implicit normy-teachings that talking about those things equals making a fuss.
I think my head would explode. I'd be sharpening my walking sticks. I'd be coming with you on your maiming sortie.
Stray said: Do I feel more hurt by the friends who are scared away by the extent of my problems or the ones who like to pretend that I am just like them? (And want me to pretend that too).
Both, really.
In the end - the result is the same. You don't really have a relationship with someone who can't meet you where you are today.
Very true.
I need to get something off my chest after reading all this. It's made me realise I have to somehow get more support. In essence, I am a crip with additional psychological problems who only knows normies. I only see normies, when I see people, I chat to normies when I am in dire pain or exhaustion, through gritted teeth (usually when I've made it to the playground to pick up my son). I haven't the stamina to attend a group that may bring me into contact with other people with my condition. Which is why I blog. And attend therapy once a week where I get to curse and rail and rant and rave and stop myself going completely mad (because I did that a while back and I'm not doing it again). I don't want to be miserable, but I feel I can say here, in this space, that sometimes things are very hard, and I struggle enormously. Thank you so much for this post. I really want some people close to me to understand better.
Jess,
"Walkie-talkies" we got from this play.
We used it all the time for a while, but it wore off eventually.
Marmite Boy assures us that "raspberry" is Cockney rhyming slang: raspberry ripple.
Fret not about failing to shower compliments on me initially. It was obvious from your response that I'd struck a nerve and, to be honest, I'd much rather my writing stimulate debate than stun its readers into silence.
Seahorse,
That's very hard; You must feel both isolated and alone.
When I was first injured, I knew nothing about disability, and no disabled people. I just knew that it hurt and that I was exhausted. I believed my life was over. I couldn't even begin to imagine how anyone in my position could have any quality of life.
But you can. You really can. It starts getting better once you recognise that life being very different from what it was before doesn't automatically equate to life being miserable.
I can only speak for myself, of course, but I had a distinct "Road to Damascus" moment. I accepted that I wasn't going to get better. (I had spent the first two years being told I would be fully recovered by x date.) And I realised that, given that it wasn't going to get any better, I had two choices.
I could feel bitter about what had happened to me for the rest of my life, thereby guaranteeing that I would never either be happy or be able to keep any friends.
Or, I could accept my limitations and make the most of the narrower sphere which remained to me.
The second choice is, I suspect, the harder one to make. But it's the one which makes life tolerable. And initially that's all it is: tolerable. But it gets better.
I'm assuming (possibly wrongly) from your writing that you're a relatively new crip. And, if that's the case, you're still in a position to compare what you had before with what you have now.
Ironically, the further away you get from your pre-crip life, the better you will cope. I not only can't remember what it's like to live without pain: I can no longer even imagine what it's like to live without pain. Being cured now would be as much of a shock to my system as being injured was in the first place. I truly wouldn't know how to cope.
It is tough. Let no-one tell you any different. But I'm a big advocate of the "that which doesn't kill us makes us stronger" theory.
I am happier than I was as a normy. I am stronger. Much stronger. I am a better person than I was as a normy.
Don't give up. Take it one day at a time; one hour at a time; ten minutes at a time, if necessary.
Don't expect from yourself what you could have done as a normy. Learn what your limitations are. Work within them. Be kind to yourself. Take care of you.
And, remember: the people who really love you, the people who are really worth knowing will still be there for you regardless of how much your body or your mind let you down. The people who desert you because of what's happened to you weren't worth having in your life in the first place. And the really good thing about being a crip is that no-one that superficial will ever befriend you again.
Ok, enough of that. I sound like a self-help manual. I may have to go away and vomit now... ;-)
Editor, thank you for starting and sustaining this conversation!
Thank you. That had me in floods of tears, but it's what I needed. I really appreciate you giving my howl of despair some thought.
I've been a crip for three years, in complete denial of it (indeed complete breakdown) for the first year or so, then as I started to come to acceptance I found many of the people around me just couldn't accept. There are some who do, and these are the people I need to get in touch with again. Depression has hit, which makes you want to stay in bed and not see anyone, which of course makes things worse. It isn't always this bad, but I think I've hit a low. It's partly circumstantial, and at present partly hormonal - stress makes it worse...thick cloud of dust as any men in the vicinity run a mile. Think I may lie low for a few days :-)
Oh, three years is nothing. Really.
These are huge life changes. We didn't expect them and it's really unfair because no-one else we know had to put up with them.
Show me someone who acquired an impairment as an adult and who hasn't experienced depression, and I'll show you someone with a truly phenomenal capacity to take things on the chin.
What you've experienced is in many ways comparable to a bereavement - you have lost a large part of yourself, after all - but it's one that most people don't understand, and can't empathise with.
Determinedly presenting a chipper face to the world at large when you're dying inside isn't always the healthiest thing to do. We all weep and/or rage at the unfairness of it all some of the time. None of the crip bloggers will think any the less of you for doing so in public.
You are clearly an intelligent, thoughtful, artistic, creative woman: how could there not still be a life for you?
I'm not a special person. I'm not brave, I'm not inspiring, I haven't got a magic wand and, frankly, quite a lot of the time, I'm not even very nice. But I got through it. I came out the other side. Eventually. And, if I can do it, so can you.
Post a Comment
<< Home