So, have y'all read about The Spoon Theory? Someone well intentioned sent it to me as a way to explain my diabetes, or the clotting issue, or the physical limitations I have now, or whichever perceived imperfection I was bitching about that day.It goes like this--the theory says that having a chronic illness or condition is like having a handful of spoons. Each activity you perform in a day costs a certain number of spoons. Once you spend a spoon, you lose it for the whole day, and once you spend ALL your spoons, you're done for the day. It goes on to explain that EVERYTHING costs a spoon--getting out of bed, getting dressed, cooking and eating a meal, etc.
I get the intention behind the theory, because it is hard to conceptualize chronic illness or injury when someone doesn't LOOK ill or injured--but I don't think it's quite right. In fact, I think it's kind of insipid and really only serves to minimize my experience. I feel like equating the daily complications of living with an incurable condition to spoons that are taken away only to be given back the next day is an oversimplification that makes me feel like I can be summed up with a utensil. And you CAN'T know, you really can't, until you live it. It's all pretend until you sign up and get an account, know what I mean?
You can't sum having a stroke and losing the total function of half of your body up with spoons. You can't appreciate diabetes until it's your pancreas that your body suddenly decides is an invader and attacks it with the fury of an unhappy honey badger. Because sometimes the minimal energy you have one day is something you pay for the next day, which leaves you with nothing. And sometimes you almost know what it feels like to be your old normal again, because we all have good days. But if I compare that to spoons, you STILL know that at the end of the exercise, you go back to being wonderfully able-bodied.
There is no end for me. That's the inherent problem with any activity in which you pretend to be something you're not--trying to experience what it's like to be female, a person of color, part of the LGBT community--knowing that you get to stop pretending necessarily colors the participation in and outcome of the exercise.
And none of it encompasses the fact that EVERY bite of food that goes into my mouth has to be accounted for and appropriate insulin has to be administered. And it's not even THAT easy. If my meal is higher in fat, I have to account for the fact that the high fat content will cause the carbs in the food to be released over a longer period of time, so I have to decide WHEN to take my insulin. It's not JUST sugar. It's carbs and fats and proteins that I have to juggle and timing and constant finger sticks. And that's just the diabetes. What about the concern that I'm going to throw a clot at any time and BOOM, another stroke? If that doesn't kill me, then what abilities do I lose this time? How much progress will I have lost? Will it happen in a part of my brain that will ultimately change who I am? What if I fall getting out of the shower and injure my left shoulder, thus impeding my rehabilitation? I only get a year--whatever's still impaired at that point will remain that way.
Oh, by the way, I DID fall getting out of the shower, and I DID injure my shoulder, and it's definitely slowing me down. How do I account for that with spoons?
Above and beyond all of that, though, I shouldn't have to explain this to anyone. It's not my job to educate anyone about any of my conditions, and I'm certainly not a spokesperson for anything, nor should I be considered the ultimate authority on anything except for my own condition. You have the internet, use it.
I know this whole thing resonates with some people, and for those people, great. But I don't need to be reduced to a handful of spoons. You can't understand my situation, because you aren't there. I don't need you to understand. I just need you to acknowledge that you don't get it. I need you to respect my "I can't" or my "Not today" and to not try to package me in an easily understood box of diagnoses and impairments. I'm a capable adult, so trust I can do my thing, unless I tell you otherwise.
Above all, though, I'm still ME. If you knew me before the stroke, you don't have to treat me any differently. Well, you might lose me in a crowd if you act like I still walk as quickly as I did before, and you might actually be taller than me now that I can't balance on heels, but we still have our private jokes and I'm still quick witted and intelligent. Don't insult me by acting otherwise, or likening my experience to something trite like spoons.
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