A lot of folks, particularly within the disabled community, are familiar with The Spoon Theory. If you’re not, hop over and read it, or else this won’t make a damn bit of sense.
I’ve struggled with how to apply that theory to my life. I used in the past, before becoming mobility-impaired, because I dealt with more than my fair share of chronic illnesses and invisible disabilities. But it meant something totally different to me as I lost my ability to walk without difficulty, without pain. It takes on new meanings every time I have a new experience as a wheelchair user. And as I loaded my chair back into the car the other day after one of a million clinic visits, I thought of a way to make my personal concept of spoons more cohesive, more understandable.
The Spoon Theory is wonderful, and perhaps its greatest purpose is giving people an easy, dignified way of saying we can’t handle something: “I just don’t have the spoons.” It conveys the message, but also tells people that we’re just not in the mood to explain ourselves. We don’t have the spoons for that, either.
But there’s something within the theory that, when constructed inside my own head, makes it much more meaningful to me. Yeah, these women were sitting in a diner, and gathered all the spoons off the tables. But I don’t just eat at diners. I eat fast food and microwave dinners and sometimes fancy family meals hosted by those relatives who have way more money than I’d ever dream of. My life is filled with all sorts of spoons, and my body reflects it.
There is no set scale to any of this, because depending on the state of my physical and mental health, certain disabilities or illnesses may become more or less important to me. But for how it stands now, these are my spoons:
1. The disposable plastic spoons
I like to imagine that they’re recyclable and that they refresh themselves every night. These are the spoons that reflect my most manageable struggles, those that I generally don’t put much thought into, like my eyesight. I don’t really think about my legal blindness on a daily basis, because I’ve lived with it my entire life, and have learned to accommodate it. Usually, I’ve got a stock of plastic spoons to rival that of Baskin Robbins. But every once in a while, somebody does a faulty inventory check, or the order doesn’t come through in time, and they run out. So sometimes, I run out of spoons, too.
2. The “what are these, aluminum foil?” spoons
You know, the ones you get in a four-pack at the Dollar Tree. They’re spoons alright, and they’re even made of legit metal (though lord only knows what kind). These are the spoons that currently embody my “lesser” physical illnesses and disabilities. My IBS, chronic pancreatitis, migraines, bad back, etc. on down the line. They’re something I should actively count and allot every day, but usually I’m too damn lazy. Those spoons pile up in the sink until–oh shit!–I run out, and something goes terribly wrong. I’ve thrown out my back (ie, injured to the point of immobility for two or more days, at least two weeks of recovery thereafter) three times, the first at 16. I injure it rather easily, and it hurts to some degree every day. I’ve gotten acute pancreatitis maybe 4 times, and get pains from it pretty often, but still, I almost never start my day with the protein shake I’m supposed to drink.
Sometimes it’s not even about things that hit an epic level of fail, but rather just always lurk about, being miserable. My IBS and dysbiosis are a daily nuisance, but I still skip taking my supplements and instead just grumble when I suffer for it. This is when those spoons have piled up in the sink, and I just drink soup straight from the bowl. It’s annoying, but I do it so often, I barely blink at it anymore. If I get desperate, I can usually drop into the Dollar Tree and buy more spoons. It’s okay. Now I have more for next time.
3. The fancy shit (spoons bought at Wal-Mart or better)
I know, I know, I have high standards for “fancy.” Welcome to the American poverty line! Anyway….
These spoons are clinking their way into my brain every day. They’re my mental spoons, the threads of my sanity that I need to actively count, lest the rope break. And I try really, really hard to monitor them, because they’re important spoons, and when I run out, it is disastrous. Panic attacks, suicidal tendencies, self-injury, fury, mania…it can get really bad. When I say I don’t have the mental spoons, dear god I don’t have the spoons, don’t push me. This is exacerbated by constant med changes, as none of my doctors seem to be able to agree on which pills will work well, and which ones will literally kill me.
These spoons scoop up my optimism, my serenity, my patience, and often jump straight out of my brain with them. I pack them with my soup to eat at work during my lunch hour, and for some damn reason, I keep leaving them in the break room. Then I return home after a long day’s work, and I’m out of proper utensils, desperately trying to figure out how to eat minestrone with a fork. Yeah, I can pick up a veggie or a bean here or there, but that’s the minimum for sustenance. I don’t have the spoons to function how I need to function, and I end up feeling lucky if I make it to bed that night without dying of starvation.
4. The “oh fuck the rich relatives are coming over for holiday dinner” spoons–the really fancy shit
These are my mobility spoons. These are the spoons that literally decide whether or not I’m capable of motion. For the most part, this applies to my knees, because they house the majority of my pain. If I’m filled up on those fancy silver spoons, I can actually walk with my forearm crutches without too much pain, or too much of a limp. If I’ve had to lay those spoons down for Cousin Jimmy a half-dozen times because he keeps stealing them to pawn for his cocaine addiction, I don’t just lose the ability to walk, I lose the ability to stand at all. Sometimes I lose the ability to even exist without agony. I can be in my wheelchair, on my couch, in my bed, but if I reach for something and use up my last spoon, it takes all my composure to not scream, gutturally and with unchecked fury.
People think that if a chronic pain sufferer is pained when walking, it means we’re automatically relieved when we sit in a wheelchair. This isn’t true. For one, we have to deal with the jolts and jostling of uneven pavement, pebbles under our wheels, and those goddamn cobblestones East Coast cities love so much. Every little bump on the ground that ableds don’t even usually notice can cause pain to shoot through our bodies like dozens needles threading through our veins. And secondly, there doesn’t even necessarily need to be outside stimuli to cause pain. Sometimes I’m sitting utterly motionless when an invisible sadist jams hot irons into my knees. I’ll just be standing, propped up on my crutches, and the sudden stabbing, shooting agony will cause my muscles to visibly ripple and cease function, leaving me to collapse into a whimpering heap of frustrated misery.
Obviously, my experiences can’t be applied in broad strokes to the disabled community, or any other, specific disabled individual. But I think most of us who suffer more than one illness or disability can understand the concept of different spoons, and how we treat each affliction with specialized care. Sometimes it takes a while for us to learn our limits, and sometimes those limits fluctuate based on flares, stress, or any number of other reasons. But the main point in all of this is that, even if we’re still testing our boundaries, working to know our specific spoon counts, we still know our limits better than any outside person can. So when we say we don’t have the spoons, we don’t have the spoons. And not having the spoons for one activity doesn’t mean we don’t have the spoons for something entirely different. Some days I’m physically confident, and could wheel for miles, but my anxiety is so bad I can’t leave the house. Other days I’m desperate for human interaction, but in too much pain to get to my apartment door. There is no right or wrong way to experience disability, and everyone’s feelings toward their own bodies are legitimate and should be respected.
And if you’re friends with a spoonie, and you’re not sure what activities or interactions we may be up for, I have an easy solution: Ask us. Show us that you respect our limits enough to not push, but that you love us enough to want to include us in your life, regardless of our afflictions. I’m crippled, not dead, so sometimes I really do want to go for a wheel around the lake. And I’m crazy, not antisocial, so sometimes I really would like to be invited to game night. I’m never offended when someone asks me if I’d like to join them in doing something I may or may not have the spoons for. But it cuts really fucking deep when people assume I’m incapable of any sort of basic human function, so they just never invite me to do anything. The crazy cripples like to have fun, too. Give us the chance.