The sensory weight of disability.
It’s the way it feels like I had barely learned how to take care of myself without self invalidation.
It’s the way that all of my feel-good strategies involve making myself feel worse first, and immediately after. So what’s the point?
It’s asking someone if they could hand me a spoon, and they do. And it’s kind of them. But I would pick the small one with the grey handle and they pick the big one with the flowered handle, which is a perfectly fine spoon. It’s just not the one I would’ve chosen. One grain of sand to add to the pile.
It’s finding out I dressed too warmly for the day and then being a climb down the stairs, a walk, a seat, a stand, a seat, a stand, a seat, a stand, a walk, a climb back up away from being dressed comfortably. So do I wear myself down a little or do I stay too-warm? Another grain of sand.
Too much noise but I’m twenty minutes of effort away from my earplugs. I’d really like to look in the fridge to know what we have to eat but do I want to have to go over there? I want my hoodie and you’ll get it for me but you get me a different one. It makes perfect sense. It’s the one you found. It’s just that the weight of it is slightly thicker and it’s not what I was anticipating.
Like a three-year-old losing their mind when their parent hands them a peeled banana or steps through the door “wrong”. They were picturing the world a certain way. I would have put slightly more ice in my own water. I would have gotten myself a different cup, the plastic feels different against my mouth. I was picturing the world a certain way. I won’t scream and fall to the floor. At least not yet. It’s just more and more and more sand to add to the pile.
Sure, I’ve got lovely people, and I could say, “can you go back down into the basement and get me the other red pillow, sorry, I was just picturing the fluffiness level under my leg being slightly different and I forgot to specify that I meant the left red pillow and not the right red pillow.” I could, and they would.
And then it’s linguistically exhausting, communicatively exhausting, plus the weight of knowing I’m burdening someone else. Or I can shut up and smile and deal with someone fulfilling my request perfectly, just different than what I imagined. Flexible thinking, right? Flexibility: absorbing the heaviness of “this isn’t what I thought” rather than inconvenience anybody else.
I’m standing near a bathroom, I guess I better use it just in case I need to use it later. I’m far away from a bathroom, I guess I better wait until I’m ready to do more than one thing to get up because I’m so tired.
I only just wrote about putting on the socks that feel good instead of talking myself into just sucking it up and wearing socks that feel bad. I only just stopped bullying and threatening myself in my own head. I only just started waking up my own interoception to be able to make sense of what I’m feeling and what I can do to make myself feel better.
And now I can’t make myself feel better.
***
(with the disclaimer that this is obviously being written only from my own point of view, and that I acknowledge that there’s quite a lot of people out there dealing with much more serious things than a probably temporary, probable meniscus tear. I’m not trying to speak for everybody and everything, or say my life is the worst or anything like that; just reflecting on some of the things whirling in my head.)
