The theme of my thoughts as I try to write up something for rare disease day this year is simply just how many spoons it takes. Just how exhausting it is to have to constantly be walking the line of needing to explain but not wanting to explain. Just how overwhelming it is to navigate medical systems when even doctors don't recognize that what happens to you body can happen. The exhaustion of fighting for accommodations, and the disbelief from people that you cannot possibly need the accommodations you need, and the overall being told over and over and over that you cannot exist.
Really that, in many ways, not existing to people, and that meaning being told things over and over and over that aren't true and can't be true, and being told that your existence isn't valid and can't be real. And just, being tired. Just being out of spoons. Just, everything being so much, because it's so always. Everything is built for abled people. How much fight do you have? Because every last moment of existing while disabled can be a fight. And when your disability is something that people don't believe exists on top of that, it has it's own details of how that happens - not better, not worse, just different, and it's own sort of tired.
So I keep trying to explain, and I keep failing to explain, any of the parts of what it's like that it feels like are overlooked. People seeing some parts and missing others. And I wrote this, and shared this, and it describes some parts of how I interact with my body that I have realized that not everyone does. And at the same time, it describes absolutely nothing. It feels useful to describe, this is how my body works! Think about how much it takes, how much effort it takes, think about the spoon cost if you were to do things this way. And at the same time, it misses everything, because this is such a tiny portion. This is that are background noise to me. This is spoon cost, not things that are anxiety, not things that are daily planning, not things that are choosing what I can do, where I can go, how to do things, not the overwhelming layers upon layers of planning that go into everything. This isn't everything that isn't movement and there are so many other thing. This is such a tiny fraction that it feels like nothing.
And at the same time, it feels like it's so much, yet another place of the overwhelming exhaustion of never having spoons because abled people just take things for granted and like, how do you do that, I don't understand. So, while things are nothing, and so much at the same time, I can try to explain, any parts of what it is like to live with my disabilities. Things people take for granted that I can't. Because, really, I'm just so tired, and I have so many reasons to be tired, and people don't see any of them. So I'll try to explain, anything that is explainable in the words I have right now.
Something I've had trouble explaining to people lately is just how much Effort it takes to have body do things. How much cognitive thinking about and concentration and knowing that if you mess up any one step then it all falls apart, and that's not just your body but your thoughts, because you have to make the decision to do each part of those actions.
Apparently this isn't how people usually walk? Apparently people don't usually walk by actively deciding to pick up foot, move foot forward, remember to balance, remember to keep foot pointed forward, think about keeping ankle oriented correctly, think about how you place foot down, all of the steps of walking, split up, and thought about for each step.
And it spending all the spoons for it to take that much thought. Because you need to keep track of all those things simultaneously. You need to do all those things simultaneously. You need to concentrate, and you need to force your body through not knowing how to do things.
Apparently people don't have this, and this doesn't make sense to me, because this is how using a body works. This is how speech works, from sorting out what to say to forcing words out of mouth. This is how controlling limbs works. This is how trying to keep track of where body parts are, and what they're doing is. This is just, what my body does.
Except, I can't even just say that this is what my body does. Because that is an oversimplification. Because I know it's unusual to have migraines that come with things like sudden weakness. Where on top of this, I'm needing to through force of will manage to Move and Do Things in order to manage to get through basic daily necessities or staying safe. Where I don't know how to keep my body upright because of not having enough strength in my leg, I need to drag it behind me, but trying to force myself to do it anyways, because it's the only way to get away from places that will make the migraines worse and worse, and in doing so, have my body fall through levels of things it can and cannot do in ways that do not make sense even to me. Because people see what I "can" do, what I can push myself through, at least sometimes, when it feels like I have to. And they don't see the cost. They don't see the days after, when my body doesn't respond, no matter how much I tell it to, because it is it safe enough without. They don't see the physical pain that has been caused. They don't see how exhausted, overwhelming exhausted, everything makes me.
And what isn't seen is the failures. The times when my body says, what, you want to climb a stair, I don't understand how you lift a foot, and put it on a stair above, that concept makes no sense to me. The times where I go to put a foot down in front of me and I just put it down with my ankle sideways. The times where I try to step without lifting my foot. The times where my leg gives out because no matter how hard I try, the strength just isn't there and force of will isn't enough.
Those aren't remembered, by people who don't deal with them regularly, aren't fighting against them always. I'm just "clumsy". Not actively fighting my body to force my body to move. Not feeling like fighting through quicksand would be easier than just trying to get to where I need to be, because every step I feel like I'm going to fall on my face if I don't do it perfectly right.
The failures aren't remembered by people who aren't terrified of them, because of not knowing how bad they are at times. Random falls, because of strength leaving, not being able to control limbs, all control gone, no matter where I am. Terrified this will happen in the road again. Not having ways to prevent it, because that's just how my body works, it takes effort to do things, it can't always do them. I can't predict when it can and can't. Triggers aren't predictable. Triggers are everywhere. Always. Nothing is safe.
What is seen is someone who spins and jumps and uses body in ways to make brain feel better. And what is missed is how much work it is to do.
So I'm told how much I don't need help. How much I can't need help. How much I should be fine.
I don't need a placard. I don't need crutches. I don't need to use straws to drink out of cups that my body can't predict how they move, and in times when my strength and coordination are even more unpredictable than their baseline. I don't need people with me to help me. I don't need things. Because I could usually make due enough to survive, if survival was all that I was trying for. If I was not going to do anything else. If I did not try to do things like leaving my room, that's an option. Not an acceptable option, but an option.
Because trying to do anything, and I just can't keep up with myself. I can pretend hard enough at times, but I just fall further and further behind, burning myself out further and further the more I pretend.
Apparently people don't have to try so hard to do everything. Don't have to think about every word coming out of their mouth, don't have to plan every motion. Don't need to concentrate, focus, force everything to happen.
But this is how I have to do things. This is how I interact with the world.
And it's fine. I am happy this way. But it should be recognized, that this does take spoons, and I simply get tired.