The Good Day lasted about 3 hours. Then I realised: What with pretend lattes and herbal tea, having been without fresh ground for a few days, I’d forgotten about the temporary high of the caffeine kick.
I came down to earth in Argos (this sounds like something from Star Trek, or perhaps it is the possible first line of a poem). Sheer pull of gravity, a dizzy head and pain in muscles made standing looking through catalogue deeply unpleasant. I was looking for calico curtains to cover the open-to-view “wardrobe” area because of house now being on the market. Had nearly nailed the items needed when I was approached by a bright-eyed teenage girl in a wheelchair. She asked could I move to another desk as this one was low down and therefore suitable for her and her friend, also in a wheelchair. All the other desks were occupied. I hesitated.
“I’ll just be a minute,” I said.
“We’re in wheelchairs,” she said, “this is the right height for us.” I moved. By the flat-screen TV screens I sat down. I looked at the lovely, chattering girls in their wheelchairs. The mother of one of them was leaning down, listening. She looked up at me, baffled.
The house has been viewed twice today. I am feeling too full of M.E. to think about it very much – hey ho, silver lining. But in other respects, a perfect Sunday afternoon because I sat in a cosy picturehouse with popcorn and a good friend, watching the new Hugh Grant and Drew Barrymore romcom, and it was everything the reviewers on rottentomatoes say it is. But today it was just the ticket.
13 comments:
It's not good for you but I'm really grateful when you write so well about these ups and downs of M.E...The intricacies of trying to manage the condition are so hidden from everyone else. The example of the girls on wheelchairs is classic.
Yesterday I completed the new survey about men with M.E. for AfME and it really brought home some of those issues. In the past I've made way for people in wheelchairs, given up seats for older people, young people with children ---- because its the right thing to do, because I'm polite but most of all because I feel that as nobody can see/tell how ill *I* feel, that they expect me to make way for those that are weaker than me .........little do they know !
Hello Reading The Signs. I read at NMJ's that you were afflicted with a sudden shyness whilst contemplating visiting my blog. I can't pretend that I didn't cry away my Sunday when I read this - cruel world, bring me readers, and please don't frighten them off - but I have picked myself up from this crushing rebuke and decided to pay you a visit.
It's brilliant, isn't it? Problem solved in a flash. Now praise me lustily, for pity's sake.
This post here made me a little jumpy, by the way. The wheelchair women should have been politely told to get stuffed. No two ways about it. I don't even have M.E - though my girlfriend does and a couple of members of my famiy do, too - and I would STILL have politely told them to get stuffed.
They are capable of waiting like everyone else, no? Maybe it's just the way you wrote it, but they came across as strident and self-regarding. Sure, the lower desk is easier for them, but it will still be just as easy for them to use in a couple of minutes time. Or is that too harsh?
They seem to be suggesting that they be allowed to bypass the inconvenience of, you know, waiting - specifically because they are in wheelchairs. Why? It just means nothing. If it means anything at all, and it doesn't, it just means that they are in a shop and they are in wheelchairs. Get to the back of the queue.
Man, I'm a tyrant. But still. I do make allowances for people if the circumstances demand - bear in mind, please, I don't go out that much - but this just seemed like special (and wheedling) pleading. Not even pleading, in fact - a demand.
You see, if you had visited me, then you would have been spared all this in your own blog space. I go on and on and on. Sorry. Blame NMJ.
I quite like going round the M.E bloggers - or bloggers with an interest in the subject - because it helps to keep me angry. Sometimes, when my girlfriend is suffering (quite rare these days, thankfully) I lose sight of the bigger picture. Obviously, she comes first. But there are thousands out there in pain, suffering. That they are so shamefully disregarded - it's all in your mind, love, do some press ups - by the medical professionals (and beyond), is something that makes me quite mad. I feel the anger dissipate, however, when my girlfriend isn't bringing it to the forefront of my attention. Anger, in these matters, is good.
It's here and it's real. And the fault, dear blogger, lies with the doubters. One day soon, in the glorious future, their shame will crush them to dust.
Kind regards etc....
Ms cusp - good to hear from you again and your comments are appreciated. I see you are not blogging at present and wonder if you found it tiring, or what your experience of doing was. Well done indeed for the survey. I haven't kept up with the latest about it all, one loses the impulse, you know how it is. But it's good to know others are "active". The wheelchair incident was interesting precisely because I was up against the truth of the situation. And there was no way of addressing it. They were sweet girls.
Mr. PE, I am glad you decided to pay me a visit and believe me my shyness was a compliment to your eloquence rather than a rebuke. I will make up for my faint-heartedness anon as you are clearly a gentleman and a scholar.
I really didn't intend any reproach to the girls. In retrospect I reckon the desk I used was probably one especially for those in wheelchairs and I may have come across to them and their mother as a bit churlish. It's the whole impossibility of the situation I meant to convey. Having an illness that is disabling but invisible. And the absurdity too, I suppose.
Your anger is appreciated.
Oh I'm only 'active' intermittently. That's how it seems to be for me and that's why I admire people like yourself who seem to manage their M.E. and maintain some creativity or even go to work (Michael Nobbs is another one --if you haven't come across him already: www.michaelnobbs.com)
If I have any energy it goes on my children and being with them because I know that time with them is precious, but it doesn't mean that I don't miss my own 'projects'. That's why I haven't blogged in ages: that and the fact that I just didn't get much response.
Probably, my own ambivalence about how to deal with people who are perceived to be weaker/more needing than myself is because I spent years working with disabled people and older people and now I have a disabled child. Knowing the ins and outs of those lives I know that, comparatively, I am, in actual fact, often better off --- no matter how ghastly I feel.
I'm glad there are the likes of TPE who can apparently be angry on my behalf when I don't have the stamina. Go on TPE --- bite some ankles !
Signs, First of all, that was me deleting, too many mistakes. Secondly, I am delighted to see PE here. He is law-breaking & boisterous, he causes chaos, but he is also an absolute sweetheart (don't tell him I said this).
I wanted to cry after reading this post. I don't really feel angry at the girls in wheelchairs, they didn't know your limitations (how could they?), I just identified so much with your being perceived as healthy and 'normal' when, in fact, you felt like you could faint at any moment soon. I face this pretty much every other day. So often, on buses in Edinburgh, I don't sit down cos an older person needs the seat, when the reality is the older person has more strength in their legs than I could dream of. I'm not talking about obviously frail 80 yr olds, I'm talking about the late sixties, early seventies ones who are quite hail & hearty, but glare at you cos you are being 'disrespectful'. And I had a nun once tell me I was 'a lazy girl', on a bus in Glasgow.
cusp,I remember reading about Vanessa Bell complaining that her sister Virginia was never able to understand how much of her creative energy went into the children. They are precious, and it is work.
hi nmj, my mother, in her eighties, does aerobics and pilates and pilates - yes, I reckon many much older people are stronger.
Sometimes I think we need to come out more about the disability. My tendency has always been to go along with the invisibility. An ongoing dilemma.
That's the problem it IS invisible until you are in such a state of exhaustion you have to sit down. I once did try to justify my taking a seat an old person could have had by saying, 'I have energy problems', & I was just met with hostility.
Hello again Reading The Signs. Fear not - I understood perfectly the point of your post and you conveyed the message well. It is the very invisibility of the disease itself, I sometimes feel, that leads to the suspicion in which it is held. Carry a pair of crutches with you as you walk (if you can) about town, or wrap a bandage round your neck - people will flock to assist you. Pathetic, really. I'm not sure how this problem is to be overcome - a badge, or a label, or a sign round the neck? Big letters proclaiming, loud and proud, that you feel weak and exhausted and close to despair and would really quite like a seat now. It's an M.E thing. Something like that, maybe? Somehow I doubt it. I imagine it must feel perfectly hopeless at times.
Anyway - I was really only blethering on about a wider point in my last response. My no-compromise approach to treating all people as equals can lead me to such a place as I found myself last time I was here. They displayed a petulant impatience - at the very least - and I don't like that. The fact that they were in wheelchairs is neither here nor there.
I want to get my way NOW - they seemed to say. And I don't much like that, either. Take it easy, friend, I'd say, we're all in this together. And by "this", of course, I mean the singular hell of Argos. Good bargains, though. I recently - two days ago, in fact - got a lust-inducing juicer and breadmaker from there. Cheap. Bargains. Change in pockets. Swoon.
It made my visit to Cork City - my first time in a town since just before Christmas - well worth it. How the hell did I get onto this?
CUSP - will happily bite ankles on your behalf. Often end up biting own ankles, unfortunately. Strange, acrobatic and self-defeating, but true. Nice to meet you.
NMJ - I break laws? Are you sure? Wow. I'm even more interesting than I thought I was. Hard to believe, I know.
Reading The Signs - tell me what NMJ said about me, please. Did she just call me a sweetheart? These things matter. To me.
Hokey Dokey - I'm off. Sorry for going on like a loon. Very nice to see you again, though, Reading The Signs.
Kind regards etc.....
PE, Yes, I did call you a sweetheart (in a moment of weakness), and sorry, I was not slandering you, I meant you break the laws of blogging by 1. disabling your comments & 2.feebly allowing yourself to be a serf to a legal gentleman by the name of PU, both actions making it impossible to interact with you on your blog. But I hear you are free, free, free so all is forgiven!
Signs, Forgive the impudence, my using your blog to chat privately with PE, but if you've followed the other threads, you will see he causes commotion and gently hijacks blogs without you even noticing, he does it in such a charming way.
Yes, that's me deleting my comments again, I just can't spell today. But it always looks a bit sinster when an 'author has removed their comment'! So am confessing.
Hello Signs, Reading yours from afar and enjoying them. I found the business of having the house on the market (not that it worked, in the end) very difficult. In our part of London the agents would send round anyone with a spare half hour and nothing better to do, it seemed. I remember working up a sweat cleaning the stairs for the privilege of being told by one bloke that he'd 'know what he wanted when he saw it'. But this wasn't it...
Cool nights and mornings here, dusty, story-gathering slow and careful work..
wendy x
well folks, it's beginning to feel like a proper convivial coffee house here what with the delightful banterings of Mr PE and nmj - and Wend, my far-away friend, how good to see you here.
And now I feel obliged to put up another post to justify all this attention.
But first I have to go and prepare food - vegetable and lentil casserole with herb dumplings if anyone is interested. No aubergine.
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