Blog > Thoughts > Sean's Thoughts > Illustrating BIID-Related Energy Loss With Jelly Beans
Illustrating BIID-Related Energy Loss With Jelly Beans
Written by Sean on Monday, March 2, 2009
It is generally very difficult to explain to people how BIID impacts on my life. I say it saps my energy. Or I say it taints everything it touches. But people don’t really see it, they don’t get it. I have been trying to figure out a way to illustrate it. Maybe this will work.
I was going to call this the "Jelly Bean Theory", but I found out through a Google search that there were plenty of other people who used that expression, including in law and handling juries. So, I don’t know what to call it. But I shall use Jelly Beans to illustrate ;) Before going further, I’ll readily admit that I found inspiration in Christine Miserandino’s The Spoon Theory.
So, imagine that the amount of energy you have to go through each day is finite. You can get a boost here and there throughout the day, but you can’t really just keep digging deep. I’m combining both emotional and physical energy here. While they are different, they also are tied together. I think for most people, a "finite" amount of energy is not a concept that is easy to understand. Oh, they sometimes end the day "bushed", but they are still able to get up, get a drink, go to the toilet, get undressed, get in bed. Some of us reach end of day and have nothing left even for that.
This finite amount of energy, I illustrate with Jelly Beans in a jar. As I go through my day and do things, I have to remove Jelly Beans from the jar. Beans removed from the jar are just discarded around it. In plain sight. It is frustrating because you can almost taste the Jelly Beans, but you can’t pick them up, you can’t put them back in the jar. If I reach the end of the day and I have no more candy, I’m f*cked. I simply cannot afford to run out. I sometimes start the day with more Jelly Beans than other days. Depends a bit on how much sleep I got, and the quality of sleep. Depends on other things too, like big life stressors: pet dying of cancer, family member hospitalised after cardiac arrest, ongoing injury that doesn’t heal, teenagers being teenagers, relationship issues, financial worries, the list goes on. The longer the list, the bigger the stressors, the smaller the stack of beans you start your day with.
So I get up, and get ready to go to work. That’s using energy, let’s remove some Jelly Beans. But getting ready to go is not that simple. There’s getting out of bed. There’s putting a robe on. There’s feeding the pets. There’s brushing things, washing possible and impossible. There’s getting dressed. Heck, there’s *deciding* what to wear. All these things are taking Jelly Beans. The stack goes down.
I get in the car and drive to work. I get the chair out of the car. I transfer into it. I gear myself to meet people, I put my "public face" on. Beans, beans, beans, more beans disappear. The "public face" certainly is a huge bean eater. I *could* chose not to put the face on. But then I’d have to explain what’s wrong, repeatedly, to people I don’t particularly want to open up to this much. This would also consume beans. On the whole, as difficult as it is to wear that face, it doesn’t cost as many Jelly Beans.
Work, answer queries, process forms, send emails. More beans down the drain.
Get back home -> Yeah, got to break it down like when I was getting ready earlier to get to work. Get in car, load the chair in. End of day, individual actions use more Jelly Beans. Sometimes inserting the car key in the ignition and starting the car uses up one or more Jelly Bean.
Stop at the grocery store to pick up ingredients for dinner. Deciding what to have for dinner. I think sometimes having to think, making decisions uses more Jelly Beans faster than just doing things. Some days, selecting what is for dinner is *much* more difficult than going to the store, fighting for parking, fighting in the aisles, fighting at the cashier’s counter.
Get home. Put food away. Cook dinner. Eat dinner. All these things consume energy, eat Jelly Beans.
Face intolerance: Jelly Beans. Encounter discrimination: Jelly Beans.
Catch up on transabled.org related emails. Now that one is funny. It seems to be a boost, it puts a few Jelly Beans back in the stack, even though it can be quite emotional to know my friends are hurting.
Watching TV, getting ready for bed. More Jelly Beans going out by the wayside. You look at my stack, you see I have quite a few Jelly Beans left. "Not so bad", you think, "what is he complaining about?".
Yeah, not so bad. But… And there’s always a but ;)
The astute reader will have noticed there’s one thing I haven’t mentionned. The elephant in the living room, if you will. So far, I haven’t taken BIID into account. Body Integrity Identity Disorder. That blasted BIID. And boy, does it guzzle Jelly Beans, or what? It’s like our Jelly Bean container has a constant leak. Plunk! One bean lost. Plunk! Another bean gone. All through the day, Jelly Beans are vanishing.
Now look at what’s left. Not a heck of a lot at the end of the day, is it?
And so I go to bed, hoping to sleep, hoping not to dream, that the Jelly Bean fairy might be generous and that I find my Jelly Bean stack brimming tomorrow.
What do you think? Does my Jelly Bean illustration make sense? Of course you get it, you’re living it, you’re spending your very own Jelly Beans. But do you think this is an analogy that the "mundane" could understand? Do you think people who don’t have BIID could gain a better understanding of how hard it is some days to manage?
Tags: BIID, Energy, Wheelchair
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6 Comments
If you have a huge whacking great elephant in your room scoffin all yer jelly beans, then can i suggest buying yourself a pet mouse. Or becoming Hindu….
Explanation ?
Well, the tale of elephants being scared of tiny little mice way well be a myth, but the analogy is often used to illustrate that something that may seem like a huge immovable object can sometimes be chased off by little almost inconsequential things. Perhaps just a slight change of routine, maybe changing how you think or react to things, keeping your mind focused on something else when the biid feelings start to surface, not allowing that wave of self pity to well up when you see it coming. etc etc
It’s hard to give specific advice to someone i don’t know. But have a good rummage around your head for a bit and see if there’s anything in there that you’d like to change about yourself that you can actually change here and now (and i don’t mean jumping infront of a moving bus or throwing yourself down a flight of stairs inorder to paralyse yourself) Just the little things…you know what i mean. Try it, see if it makes a difference. Granted, it probably won’t make the elephant scarper leaving nothing but an elephant shaped hole in your wall. But it may curb it’s appetite for a while, and you may even force it to go on a diet.
(If you want to get rid of a thornbush from your garden, you don’t wanna wade straight into the roots of it armed with nothing but a shovel and a pair of wellies, you’ll be skewered to death. Instead, you get a pair of small secateurs and prune off the outermost thorns first, then slowly work your way down to the roots) In other words, try having a look at other smaller issues in your life first(if you have any) before you tackle the big candy eating one who’s taken over your kitchen.
And the become a Hindu bit…apparently elephants are sacred to Hindus…so you could try embracing it, loving it, and accept it’s always gonna be one greedy bugger….and look a job in a candy store :)
Completely unrelated question, but in a previous post, whenever i used quotation marks or an apostrophe a backslash somehow magically appeared in the text after i hit the submit button. Am i doing something wrong ? or is it just a clitch in the system ?
3 On 4 March, 2009, Sean said:
@Will the mouse thing, yeah, not new to me. I’ve been down that route before, without much result. Worked on that both by myself and in therapy.
About the backslash, this is entered automatically before the comment is included in the database, but they shouldn’t be displaying back in the post. I’m not sure why it did it to you, looks like just a glitch.
4 On 4 March, 2009, Claire said:
Will, I think that is excellent advice. Gives me a lot of food for thought, and ideas, thank you.
I’ve learnt from past mistakes that the worst time to take on huge life changing events is when you’re in the depths of despair, and you loathe and despise every moment of your current situation. It’s that old saying of “sometimes you can’t see the wood for the trees”. And quickly jumping to a new thing to get away from an old thing can often create more problems than it solves. e.g. quite a few years back i was about to get married to my soul mate (my one true love) but, for various reason i won’t go into here, we had to break up. And, to be honest, it nearly destroyed the both of us. So, like the idiot i am, i threw myself at the next pretty girl that walked through the door, and got married about a year later….and divorced a few years after that…(i’m sure you can read between the lines on that one :)
Anyway, how does this relate to biid. (I may have mentioned this when i made a few posts in here a couple of years back). But, i took a long hard look at this madness that was going on in me head. And asked myself some really tough questions, and forced myself to be completely honest with the answers (the temptation to bullshit myself was surprisingly strong, don’t'cha’know)
Anyway, I realised that if i were to have my dreams realised and become a para one day, there was absolutely and positively no guarantee that it would make me a happier or better person. No matter how much i tried to convince myself of it, it wasn’t a “cast in stone” certainty. So, that got me thinking, especially about my state of happiness in general, it wasn’t good. And seeing as i’m not a complex man, i figured, if i learnt how to be happy in my current circumstances, then, when i become a para i can take that happiness (or at least the knowledge of that happiness) into that new life, just incase being a para is a heck of a lot hard than i envisage. And lets be honest, we always take some baggage with us where ever we go. So i thought it’d be best to take a bucketfull of good stuff rather than a suitcase full of misery, yeah ?.
It took a while, and quite a lot of hard work, but i did reach a point where i can honestly say i’m now a happy chappy. Not just out on the surface, but deep down in my innermost soul where all the hobgoblins and weird looking creatures lurk. I’m not perfect, far from it, i still have my moments. But i generally feel far happier with my life as it is now, and i even feel comfortable in my own skin. This may sound an odd thing to say on this site, but, i don’t actually have a problem with my bodily image, i’m quite happy being able bodied at the moment. Don’t get me wrong, i still desperately desperately want to be a para. But i’m happy to be abled bodied while i’m waiting…..
An added bonus to all this, and this took me by surprise, but, life’s so much easier when you’re happy and contented. The old problems don’t seem anywhere near as big as they used to. And it’s much easier to think rationally and objectively about issues and situations you come up against. And, perhaps the biggest benefit of all, this biid thing is a damn sight easier to keep in check and under control. (it doesn’t go away, it’s just easier to manage). Although i’ll admit, every now and then it can spring up from nowhere and give you a swift kick in the wedding veg, it’s nowhere near as bad or destructive as it used to be)
Don’t misunderstand me, i’m not Peter Perfect, not by a long shot, i don’t have all the answers (if any) It’s just, i got to a point in my life where i’d had enough of this thing ripping me apart from the inside-out. And i came to the conclusion that i was the only one that could sort it out. It had to be me, it was my responsibility, it was my life. And you know what, one of the hardest things to overcome was the very first thing that needed to be done. And for me, (being the completely lazy git that i am), was to get the motivation to actually do something about it, and stop myself from wallowing in self pity, which if i’m being honest, i rather enjoy…err i mean, enjoyed ;)
Sorry, another long long post, and sorry for hijacking the thread. It’s just, i can see a lot of people in here in a lot of pain. And i just wanted to let folk know that you can get this thing under control and stop it from ruining every part of your life. Trust me on this one, there’s absolutely nothing special about me at all, not in the slightest, i am the Oxfords English Dictionary definition of the term “average bloke”. So if i can do it, anyone can, and i do mean anyone.
6 On 5 March, 2009, Claire said:
Will, please don’t ever apologize for one of your long posts again. You have much to offer and I enjoy reading you. Thank you.
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1 On 2 March, 2009, EB said:
It’s an interesting visual to show how it goes. I think I’d start including the 500-lb gorilla in the room early on though, to show the progression of how it is affecting you. Otherwise someone who doesn’t understand might think you lose all your jelly beans at the end of the day.