Apr. 20th, 2011

farnam: (Default)
Ever read the 'spoons theory'? I know anyone looking at this has, but just in case, here it is:


It has its uses, I suppose, but in my opinion is grosly over-used. As I see it, there are separate problems with both the story itslef, and with the use that is made of it.

First and foremost, I'm a pedantic b!tch, and need to state clearly that it is not, in any way, a theory, its a frigging metaphore, for crying out loud. Not a theory. Thank you. Anyway, on to the more fundimental issues.

The metaphore itslef. As I said, its useful in many ways, but its greatest failing is in the fact that it pre-supposes a dichotomy. You are healthy, or you are sick. Most people are healthy. Most people have limitless 'spoons' (a metaphore for energy/physical strength/capacity). Any time, in any context, a dichotomy is used, failings occur. The world is NOT divided into the healthy and the sick - many, most people have health privilidge, in that thier life does not have to actively revolve around illness and/or disability, but thats not the same as saying that they will never catch a cold, and have lingering fatigue afterwards for a month or two because they couldn't aford the few days in bed to recover that they really should have taken. Or are prone to migranes that are crippling when they strike, but are fine the rest of the time, or similar. Thats my biggest gripe with the story, I don't believe that anyone has limitless 'spoons'. More about that later when I propose my alternative 'bath' metaphore. Secondly, it presupposes that all illnesses are illnesses of loss of energy. Not all are. Some are more caracterised by pain than fatigue, and some by other features - loss of capacity to breath during an asthma attack, for example, which is still a serious illness (people die of asthma attacks too), but can not fit the 'spoon' mataphore. Again, more on that in a moment.

And on to the use that is made of the metaphore - at it's simplest, it is basically a story in which the word 'spoons' is substituted for the word 'energy'. And its cool and trendy and a great way to show how with-it you are to always say 'spoons' and never energy. And this is my next big gripe - the use it is put to (not a problem inherent in the orriginal writing, but in its subsequent viral popularity). I can't get to the pub tonight, my totally-living-with-health-privilidge friend tells me, becasue I've been out every night this week so far, and I don't have the spoons. Hold on a minute, stop the clock. There is NOTHING abnormal, or beyond the standard human condition, to not be able to socialise every night of the week, and still hold down the day job. The 'spoons theory' was written by a woman with Lupus - a very, very serious illness that significantly reduces life expectancy. And in telling her story about the spoons, she was trying to explain the difference between her and you - but you have gone and colonised her words - and in doing so, not actually heard a word she has said! Read her words again, anyone who does this. noowhere does she try to claim that her 'spoons theory' (cough, cough, metaphore) is about all chronic illness, all invisible illness or any such thing. She claims its about LUPUS. So, in my opinion, the many, many people who use it to actually claim 'I'm tired' are in fact being very disrespectuf, becasue they are suggesting that the experience of a severly ill person with Lupus is nothing more than thier normal level weiriness.

It also doesn't count for all illness, chronic, hidden or otherwise. But it is widely promoted as if it did. And in doing so, it then hides, minimises or obscures the very different difficulties that different illnesses bring. Take the aforementioned asthma for example. I've had asthma all my adult life. Asthma does NOT take away my 'spoons'/ energy on a daily basis. I do not have to stop and think 'can I have a shower today'? becayuse of my asthma. I DO have to think 'can I walk down that aile of the supermarket?' becasue of my asthma, because perfumes and cleaning chemicals trigger attacks in me. I have only mild asthma, it is true - although, it always stuns me how much is in the perception of the person experiencing it. I know so many people with asthma who have never yet had to be rushed to hospital with an asthma attack, and consider myself 'mild'' because it only happens to me very rarely. My sister in law calls unnoticable bouts of shortness of breath 'asthma attacks' and from her reactions to me when I had a very mild, needing no treatment but real wheezing episode in front of her, she had never even seen that happen to anyone before. And totally paniced. And I want to go 'arrrggggg' becasue I try and tell her about the things I can't do, and she'll always go 'me too', and then try to out do me, but she has no real conception of the word 'can't'. And thats my problem with the spoons theory - everyone applies it to themsleves, often in the most utterly innapropriate ways, and so still end up with no concept whatsoever of the distinction between themsleves and the person that really really can't do stuff, that really really is very ill with reduced life expectancy.
It all comes back to privilidge denying which happens on all layers of privilidge - race, class,gender, sexuality and so forth. None of these things are dichotomies, but lots of people experience privilidge, and many deny it flat out. And so it is with the people who's lives do not have to revolve around illness (by which I do not mean don't have some health issues, but whoes lives/all daily activities/employment prospects/family formation chances etc are not dictated by them) colonising the language, metaphore and imagry of the ill saying 'me too' all the time, and thus denying the reality of those without health privilidge. But that failing was built into the orriginal 'spoons theory' by its use of dichotomies, and its failing to understand that, as conterintuitive as it sounds, the healthy are ill too. (as indeed the ill can be healthy too, in specific ways, for every illness/disability a person has, there are a gazillion they don't)

And so, I said I'd propose an alternative to the spoons theory, and being the saddo that I am with too much time on my hands, I've actually put a bit of thought into this over the last week or so. For me, my experience of physical strength is like a bathtub, with a dripping tap, and an outlet that allows the person to pull the water (physical strength) out on demand.
Everyone has a bath. Except its not a bath preciesely - becasue we all come in different shapes and sizes, and our baths of strength come in different shapes and sizes too. An olympic athelite may have an olympic sized swimming pool of strength to draw on, with a fast waterfall of re-flow to replace anything used up - but watch the uber-healthy marathon winner and they will still probably fall to the ground after they have won the race, becasue they have just drained thier olymic-sized-swimming-pool of strength, and need to just lie there on the ground until thier fast flowing waterfall replenishes it a bit.
A normal healthy person has a normal household sized bathtub with a normal flowing tap - so, they can't run a marathon, becasue they will not have that level of reserve, but they can run for the bus. And arrive, puffing and panting and haveing to bend over and lean thier hands on thier knees becasue the bath-tub has just been drained, but let them sit on the bus for 20 mins, and thier normal flowing tap will have replenished the bath, and they can still jump off the bus and go to do thier days work. For me, my bathtub has, slowly and insidiously over the last few years, shrunk to a little sink full. With a clogged tap that will only drip at a slow steaady pace. So I can never run for a bus, no matter what, becasue my maximum reserve will never get that full. I can manage to get to the bus stop slowly, on my crutches, but that will empty my sink. And the drip of replenishing water will not speed up in response, so that will be me for the day. My sink-sized bath-tub will stay empty until after I have had a nights sleep.

Now this is important to me to expalin it in a couple of ways. First of all, there is the dichotomy issues. Simply becasue I've explained it a little differently, and my metaphore allows for all bath-tub owners, not just the ones who have shrunk to the sink, I'd be much less offended at someone saying 'my bath-tub of strength is empty' than waffling on about spoons when they clearly have no idea what its really like to have lupus/ other serious strength draining illness.
But the reason its much more important to me to explain this in this way is becasue of the variability of my personal illness. becasue every day I get a little sink full (although some days its bigger/faster replacing than others, its always tiny compaired to pre-sick me). And I get to make hard hobsian choices about what I will use my daily sink for. a shower? That'll use up a good bit of it, so thats something else I won't be able to do. A walk to the shop to buy food? I won't cook that day. Hurry down the stairs to answer the phone? Not leave the house at all, not even to the corner shop. but it doesn't mean that I can't once hurry down the stairs or cross the road to the corner shop, it just means I have to choose between those two. And I get sooooo very tired of the 'but you could do it yesterday' attitude I encounter. And my mother is the worst culprit, but so many people do it. How come if you can do this, you can't do that. becasue doing this used up my sink-full. Thats why. How come you could do it yesterday but not today? becasue today I used my sink-full for something else. but equally, I get just as tired of people not appreciating that using my sink-full, to its limit, each and every day is important to me too. You won't be able to do that, you can't do that, are you sure you can cope. its my sink full, only I know whats there, and even if I misjudge and end up lying on the street unable to get up, I would like to be let make those mistakes/judgements for myslef. The marathon winner gets critisism from no one for falling to the ground after winning the race, but if I fall to the ground I'm not supposed to try going out again?

farnam: (Default)
Today I went in to town to meet Dale. It was a great afternoon. We met at Covent garden for three, and I can't believe I have never been around there before. We started in a chip shop, strolled through the market as far as a pub where we had a drink, then got a bus up to First Out for cake. And thats it. But in managing all that I stunned myslef as thats the most walking together in one day for a very, very long time. it wasn't easy, and involved quite a few stumbles, a hell of a lot of rests on tiny stretches of walking, but no hit-the-ground falls. All in all it was a lovely afternoon/evening, helped in small part that Dales brain was whirring with her own problems so I got to not talk much about my health. That sounds terrible, doesn't it, like I'm glad a friend has issues, but its just a good break to be able to put my brain/sympathies somewhere other than my own jelly legs.
I was well and truely 'does he like sugared' though in the process. Dale wanted to start by getting a quick haircut, and I asked to use to loo when in the hairdresser. The hairdresser told Dale where I could find the bathroom, asked Dale if I was OK, and then stared in horror when Ii went in on my own, asking Dale why she wasn't helping me. He never spoke one word directly to me in all this time, although I was the one who directly asked him where the toilet was. Gurrrrr


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