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serynI finally figured out what bothers me so much about "The Spoon Theory". It's the spoons. I kept getting stuck on it being spoons. You can force it to make sense because a spoon holds a small amount and how you hold the handle affects how much use the spoon will be at holding that quantity, but it's still a dinglehopper*.
*dinglehopper is the name Sebastian the crab gives Ariel for a fork in The Little Mermaid. There is an iconic image of Ariel using it to comb her hair. I use it when someone picks up a found object, gives it a new name, and convinces nubes to use it for a stupid/unintentional purpose.
If it had been a set of apothecary bottles, that would have made just as much sense, despite being unapproachable to the lay person and not something that could have been used in the charade of the original Spoons story.
Some of my problem is that spoons generally don't sit flat so contents stay in the bowl. But if you hold them, it's one spoon at a time or you lose all the contents anyway. Then some of my problem is who carries around a pound of extra metal when they're too sick and tired to live normally.
I also hate the intolerance that healthy people have no problems. I realize it's not the same thing as having a catastrophic illness, but we all have days when there are ten thousand long-tine forks when all you need is a spoon. You can have the full complement of silverware and most of it's in the dishwasher encrusted with last week's meals. Or you can be looking at the last thing in the drawer and it's a salad fork from the cheap Oneida sets where it's got the diamond cut-out... while you're holding a bottle of cough syrup.
Lately I've been feeling like, if the spoon theory was accurate, that mine were all sporks. No matter how hard I tried, things were falling out and dribbling on the last clean shirt. Does that mean I'm sick enough to qualify? Even if you can't see it? Is there some sort of temporary disability pass that the internets and friends and people on the street grant? Or is the whole point of this to have excusable illnesses for some people, so everyone can blame me for being lucky enough to only have serious catastrophic problems happen to loved ones around me while I stay "well".
It's not that I don't have sympathy for complete strangers I don't know who have a life-altering issue. It's not that I don't feel for virtual friends who are struggling. It's just that today I'm really really really really really really (times 4 thousand) upset because things have been horrible and I get email from "friends" saying (in response to my saying what was going on, no I can't go to lunch, maybe not ever), "You're lucky you don't have a job, and with how hysterical you are it's no wonder you can't work."
Do you think we could all get together and use some of our spoons like Alan Rickman's character in Robin Hood Prince Of Thieves? I'll stop bitching about spoons being a stupid but happenstantial choice of prop if we can use them to carve out the hearts of moronic people so it hurts more.
But I still think the analogy would make more sense if it was conveyed with "Everyone has 12 bottles they store their daily energy in." When you're sick, your bottles aren't 2-liters or gallon jugs with the convenient handles, you've got a can of soda... once you pop the lid that whole container is gone. And the other bottles are vanilla or salad dressing or the green liquid with the floaty bits left in the jar of pickles... so you don't even get the whole jar's worth of energy. --- I think this is a better analogy because it recognizes that other people do have limitations even if comparatively they seem like more than the sick person could ever need. It also conveys that some days it looks like other people have a lot of resources but their containers can be nearly empty without being obvious. Since the point of the original poster was to talk about what it's like to be sick without looking sick, I think we should include something where it shows how that could still fit into the explanation.
For me, having someone close to me be ill was like having a hole punched in the largest containers and losing all the lids so when I jogged to move fast enough to do the tasks of me myself and I (I was like three people and I didn't sleep even 4 hours a night for more than 2 weeks.) all the energy I had tried to save up just fell away uselessly.
I called it White Rabbit syndrome. From Alice In Wonderland. Where the White Rabbit jumps around and shouts that he's late he's late he's late. But all that jumping around isn't getting him anywhere. I kept doing that. I'd jump back up again whenever I sat anywhere because I was convinced there was somewhere else I needed to be. I couldn't ever rest. And when I was sitting somewhere, I was emailing status reports, calling people who needed to be kept informed, and trying to remember what 7 things I was supposed to have done 2 days ago and the dozen left from yesterday.
*dinglehopper is the name Sebastian the crab gives Ariel for a fork in The Little Mermaid. There is an iconic image of Ariel using it to comb her hair. I use it when someone picks up a found object, gives it a new name, and convinces nubes to use it for a stupid/unintentional purpose.
If it had been a set of apothecary bottles, that would have made just as much sense, despite being unapproachable to the lay person and not something that could have been used in the charade of the original Spoons story.
Some of my problem is that spoons generally don't sit flat so contents stay in the bowl. But if you hold them, it's one spoon at a time or you lose all the contents anyway. Then some of my problem is who carries around a pound of extra metal when they're too sick and tired to live normally.
I also hate the intolerance that healthy people have no problems. I realize it's not the same thing as having a catastrophic illness, but we all have days when there are ten thousand long-tine forks when all you need is a spoon. You can have the full complement of silverware and most of it's in the dishwasher encrusted with last week's meals. Or you can be looking at the last thing in the drawer and it's a salad fork from the cheap Oneida sets where it's got the diamond cut-out... while you're holding a bottle of cough syrup.
Lately I've been feeling like, if the spoon theory was accurate, that mine were all sporks. No matter how hard I tried, things were falling out and dribbling on the last clean shirt. Does that mean I'm sick enough to qualify? Even if you can't see it? Is there some sort of temporary disability pass that the internets and friends and people on the street grant? Or is the whole point of this to have excusable illnesses for some people, so everyone can blame me for being lucky enough to only have serious catastrophic problems happen to loved ones around me while I stay "well".
It's not that I don't have sympathy for complete strangers I don't know who have a life-altering issue. It's not that I don't feel for virtual friends who are struggling. It's just that today I'm really really really really really really (times 4 thousand) upset because things have been horrible and I get email from "friends" saying (in response to my saying what was going on, no I can't go to lunch, maybe not ever), "You're lucky you don't have a job, and with how hysterical you are it's no wonder you can't work."
Do you think we could all get together and use some of our spoons like Alan Rickman's character in Robin Hood Prince Of Thieves? I'll stop bitching about spoons being a stupid but happenstantial choice of prop if we can use them to carve out the hearts of moronic people so it hurts more.
But I still think the analogy would make more sense if it was conveyed with "Everyone has 12 bottles they store their daily energy in." When you're sick, your bottles aren't 2-liters or gallon jugs with the convenient handles, you've got a can of soda... once you pop the lid that whole container is gone. And the other bottles are vanilla or salad dressing or the green liquid with the floaty bits left in the jar of pickles... so you don't even get the whole jar's worth of energy. --- I think this is a better analogy because it recognizes that other people do have limitations even if comparatively they seem like more than the sick person could ever need. It also conveys that some days it looks like other people have a lot of resources but their containers can be nearly empty without being obvious. Since the point of the original poster was to talk about what it's like to be sick without looking sick, I think we should include something where it shows how that could still fit into the explanation.
For me, having someone close to me be ill was like having a hole punched in the largest containers and losing all the lids so when I jogged to move fast enough to do the tasks of me myself and I (I was like three people and I didn't sleep even 4 hours a night for more than 2 weeks.) all the energy I had tried to save up just fell away uselessly.
I called it White Rabbit syndrome. From Alice In Wonderland. Where the White Rabbit jumps around and shouts that he's late he's late he's late. But all that jumping around isn't getting him anywhere. I kept doing that. I'd jump back up again whenever I sat anywhere because I was convinced there was somewhere else I needed to be. I couldn't ever rest. And when I was sitting somewhere, I was emailing status reports, calling people who needed to be kept informed, and trying to remember what 7 things I was supposed to have done 2 days ago and the dozen left from yesterday.
no subject
Date: 2011-09-13 08:17 pm (UTC)I like your jar with holes theory for caretakers.
Your spoon thing has me confused. I've never heard of being "low on spoons" or "out of spoons" or "needing more spoons" to do with the amount of liquid a spoon could hold. I've only known it from its original source, The Spoon Theory: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
Perhaps there is an alternate spoon theory floating around that someone made up when they saw the term and had to guess at its meaning instead of asking?
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Date: 2011-09-14 12:25 am (UTC)I'm sorry for behaving badly today. Today has been absolutely horrible.
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Date: 2011-09-14 12:42 am (UTC)I didn't see you behave badly today. Did you piss off someone IRL?
I am sorry today was horrible. : ( I'd tell you it will be better tomorrow, but I don't know if that is true. *hugs*
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Date: 2011-09-14 01:30 am (UTC)It could be toothpicks or frogs or actually birds that I could have complained about. I really dislike birds. I hate that most people think they're beautiful and should be protected when there are about 10,000,000 geese crapping all over the park so you can't walk on the grass without slipping and falling... but English people eat goose at Christmas. We could feed all the hungry people in California if we could just cook all those pestilent geese. But no, people think they should be protected because all birds are beautiful--- and yet, they eat chicken mc nuggets, of course, but everyone knows those aren't made from actual chicken. I also hate that Angry Birds game because no one seems to be able to play it on their phone without the volume set to ear-splitting. Birds suck, man.
Pick a safe target. Because I know you're probably a founding member of Audubon and used to hold the guy's easel while he sketched the myriad varieties in the park an hour from here. The way today's gone, anything I could possibly be angry about is going to hurt people I like.
no subject
Date: 2011-09-14 02:12 am (UTC)I think they weren't all too fond of pigeons, though.Here's the thing - I don't give a rat's ass if you hate things I don't hate. I have no thought that my friends need care about the things I care about. Yeah, it is nice when they do, but ... birds, spoons....? I don't get mad or hurt or offended.
If you don't find something useful (and in this case, something that doesn't apply to you so um ...... why should anyone else care?) you just don't. No biggie - to me anyway. You know I always am only speaking for myself.
no subject
Date: 2011-09-14 03:45 am (UTC)no subject
Date: 2011-09-14 04:01 am (UTC)No, I did say the only spoon theory I knew of was the original and I allowed for the fact that others may have come up with alternate ones. (It's the internet - there is alternate everything everywhere.)
I did post the link to the original story because I didn't think you'd ever read it. I didn't mean to imply you had it wrong and I am sorry if that it is the way it was heard.
To me different≠wrong automatically. I'm pretty clear when I think someone is wrong. I tend to say, "You're wrong." Sometimes I even say, "You're wrong, asshole." So yeah. Pretty clear about it here. Didn't say either of those to you.
I think your anger came through. I think your unhappiness with the spoon theory came through, too, but perhaps I did miss your point? I thought your point of it was that
isit did not fit for you because you are the "healthy" one and one was needed for the caretakers of the ill. And, that even if it did fit it was stupid, anyway. So .... what was the point you were communicating that I obviously missed? I am listening (best I can) even when I post links.I appreciate the idea that you feel an apology is necessary, but I assure you I am not hurt. But if you'd like I could fake it.
no subject
Date: 2011-09-13 08:17 pm (UTC)There are days (and thankfully, a lot more of them recently than I was expecting) where I've got an awesome full cutlery set to feed 6 people a multi-course dinner party. But there have also been days in which I got the equivalent of a cereal spoon, and that was it for the day, and I got to decide if I was having cereal or soup or pudding - and only got to pick one. (And where, whatever I picked, people were going to critique my unbalanced diet, and tell me I should have picked one of the others.)
(I also remember that the spoon theory started as one thing that one person made to explain stuff to a particular friend. I think it's a useful analogy, but it was never designed to be 'works for all settings'. I think it'd be cool if we had one, but I don't blame the spoon theory for not being it.)
Your bottle analogy - I've tried something similar with people sometimes, and it's usually not worked: people either assume that each day, you get the same kind of containers, or the same number, which just isn't true for me (more true now than it used to be, but I spent about a year with amazingly high variance in what I could get done.) I wish it worked better, but I think part of why the spoon analogy works is that people can visualise "3 spoons vs. 12 spoons" in a very concrete way.
The thing about acute illness (major thing, but a thing that does not have major lasting consequence - a couple of months, vs. years or more) is that it looks a lot like chronic in some ways - but the expectation of when things get better (and that they get better in the first place) is a lot different. The choices you make about coping with something that is a couple of months of really frustrating are often different than the choices you make if those couple of months are never going to end. Doesn't mean the acute issue choices are any less frustrating - but they are set in a different set of assumptions.
I do like a friend's explanation of Hollywood Broken Leg Syndrome (that she actually wrote because of something I said) at http://mrissa.livejournal.com/723084.html - she points out that a lot of our assumptions about illness, both acute and chronic, are highly flawed. (And one of the things on my list of things to talk more about is how to do some of that better, but I need more brain to do it, because, hi, chronic medical foo in the mix.)
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Date: 2011-09-13 08:23 pm (UTC)I think that would be a good meme, instead of the "invisible illness one" - wait, no, in addition to the invisible illness one, because a lot of the confusion is based on flawed thinking and inexact wording from people dealing with the chronic illness.
*ponders meme*
no subject
Date: 2011-09-13 08:28 pm (UTC)no subject
Date: 2011-09-14 12:21 am (UTC)I don't mind, necessarily, that the spoons thing works for some people. Or if they want to use it for themselves.
I don't like it applied to me. And I don't like it being used for everyone. And I heartily wish it wasn't about spoons. I just want to hate spoons because they're used for this and spoons are pudding and ice cream and soup and cereal tools.
But mostly today was unexpectedly horrible and I can't quite stop being angry at stuff that's not totally relevant. I had to go without medication because I can't reliably drive while taking the current dose of anti-anxiety stuff, and then I was set off by the fucking intolerant bitch's email, and the drive was awful and once we got there.... the news is "We still don't know why Simon's sick, but we're going to do more tests, given what these past results say, you might have lymphoma or you might not, your score is definitely bad enough that you will need to be evaluated for transplant but almost no one with your blood type gets a liver before they're within a week of dying and there aren't very many." So it started out stressful enough that I needed to pick a target and got so much worse it's like falling off a cliff and then seeing the rocks.
But oh no, it's okay [for random people who said they were my friends] to BLAME me for being upset while Simon was in the hospital and to call me useless for not having a job I probably would have lost during the crisis anyway.
It was. you know. a locked post. So I didn't hurt random people. Just the people who like me well enough to think badly of my behavior today.
no subject
Date: 2011-09-14 12:47 am (UTC)The random people need to be deleted from your life. YOUR life, not theirs. YOUR life to include a job or not to include a job YOUR choice. You and Simon were fine as is, they can butt the fuck out of it.
*punches email idiot and throws a drawer full of spoons at her, all with my mind from over here* ;-)
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Date: 2011-09-14 01:34 am (UTC)I'm not doing very well today.
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Date: 2011-09-14 02:14 am (UTC)You may want to just throw spoons from up close.
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Date: 2011-09-14 01:13 am (UTC)I'm so very sorry you had a lousy day, and that you're not any closer to any kind of useful information.
And anyone who thinks you shouldn't be upset while someone you love is in the hospital (and so very horribly ill) does not need to be in your life.
(I do not think badly of you today, either, incidentally. I think you're an interesting person, going through a very hard time, and trying to do your best. Which I personally find a lot more interesting than people who go waving their idea of how other people ought to behave in crisis around.)
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Date: 2011-09-14 01:24 am (UTC)Like the meltdown day... I didn't scream and wail in the ICU hallway. I handled that pretty well for a meltdown. I expect other people to show some minimal courtesy like that.
But outside the hospital. it's like they think he's stopped being sick. And I'm just so angry.
I can't help being angry. I did a really great job of not being angry for ages. Now. Angry.
And I'm angry with the spoons theory. Of all things. How completely useless am I? I can't even be mad at something that makes sense.
It's bad to be angry. No one understands and they don't respond well. People are a lot more helpful if you're kind and polite and present. But I can't help myself. Today. I'm really really hurting.
no subject
Date: 2011-09-14 02:24 am (UTC)Gods woman you make me want to shake you and hug you at the same time. You are entitled to your emotions as anyone and everyone else. Let simmer and grow and explode out of you. Then let it go away. *shrug* You know how long it needs to be there to be useful and you know when to chuck it. So be the you that you know.
My heart aches for you that you are hurting so. I wish I had an oil for that. : (
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Date: 2011-09-14 01:33 am (UTC)I'm glad you're not mad with me. I'm just not doing very well today.
I could pick another target if you want to suggest something. But you should coordinate with all the other people so I don't feel like I need to apologize to someone else next.
no subject
Date: 2011-09-14 02:42 am (UTC)no subject
Date: 2011-09-14 03:52 am (UTC)I'd say "Fuck cancer." because they have a SLEW of groups for that. Every kind of cancer, every kind of issue relating to cancer, for various classes of loved ones... (parent, child, spouse, whatever.) and it just seems like they've taken all the possible help.
And it's weird because a lot of cancer is like the "broken leg" theory. No one is surprised you didn't know you had it. No one seems to expect cancer patients to get better without setbacks. Even though there are similar diseases, we've decided only "The Big C" gets our collective sympathy.
Maybe there is something for families of people with other catastrophic illnesses. But so far no one has mentioned anything. No one has even said, "You're lucky she's there keeping track of all your papers and data and appointments." No one looks at Simon and says, "You're lucky you have someone to drive you!"
After driving home in rush hour traffic, all I was thinking was "FUCK, I'm STARVED." So I asked Simon what he was going to want to eat and he was too nauseous from the blood tests to want anything. He couldn't even think about food. I finally went and bought Chinese take out because he'll eat the soup even if he's "just drinking". And I do understand how if you feel that sick, you don't want to eat chunks you might then blow. But I didn't want to cook anything here in case that made him sick too.
I just don't think I can do this. And I certainly couldn't do it without food.
MOAR LINKS!!
Date: 2011-09-14 04:19 am (UTC)And here is there PDF: http://www.wellspouse.org/docs/mainstays/compmainstay2.pdf
no subject
Date: 2011-09-14 05:21 am (UTC)Keep eating!
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Date: 2011-09-14 05:56 am (UTC)ETA I did not read all the other comments before typing this one. *facepalm*
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Date: 2011-09-14 06:36 am (UTC)I agree that it would be a good idea to have something for people who need help even if it's not the big well-known problem.
But hey! the macabre positive spin, maybe Simon will have lymphoma too and then I'll qualify! You'll have to excuse me for NOT wanting that though.
no subject
Date: 2011-09-14 05:59 am (UTC)Hmm, also, +1 remembering that the spoon theory thing began kind of randomly, but I agree that one wants the metaphor to be sturdier; I too have tried taking it to its logical conclusion(s) and found it wanting. People use the spoon metaphor at me a fair amount because of my chronic joint stuff, but I talk about spoons only with people whom I know to be big fans of the spoon thing; for me it doesn't really work either.
no subject
Date: 2011-09-14 06:32 am (UTC)I probably wouldn't have ranted about it here if I hadn't already been edgy. Because I knew better. I knew my audience tends to have people who are really enamored of the spoons.
I wasn't, however, expecting things to get so much worse that I wasn't able to handle the comments with any sort of equanimity.
I know I've been insensitve sometimes to people who were dealing with personal crises, but that email was really ghastly, yes. And even if there were such a thing as karma, I didn't deserve that today.