I fell in a hole. A deep hole. And it hurt. But when people came to help, instead of getting me out of the hole, they stood around the top and asked me how I got in the hole. What I had done to make myself fall in the hole. How deep was the hole. How long had I been in the hole. When I asked them to just get me out of the hole, they said that they couldn’t because I would just fall back in the hole. They had to know why I was in the hole before they would or could get me out of it. Maybe I secretly liked being in the hole. Maybe I’d put myself in the hole for attention. Sometimes they measure the hole and take pictures of it (the walls, the ground, the sky) only to tell me there is no hole that I’m in. They show me the pictures of myself, the ground in the hole, the walls, the sky, and say, See, there is no hole. You are the hole that you’ve made. We can’t do anything to help you out.
What would a pain language look like? Sound like? Written, I imagine on the body and the sheets, clothes and pillows, shit and blood. Projected like movies.A stuttering, irritated series of marks with an almost rhythm (always almost). For neuropathy it would be written on shoes and socks, gloves, the steering wheel, keyboard. Charred and raised red, engraved in boiling marks, for the sizzling sound that should be there. Like bare electrical wires hissing as they buzz and threaten out of sync.
The aching would be the terrible drone of wailing mourners, the white hot broken place that’s cool to the touch. The written words would loop and loop, letters and symbols heavy, scribbled on top of each other, an indecipherable, weighty pile of muttering, whimpering pleasestoppleasestop.
The headaches a series of spikes and blades for letters, curved deep and deeper into the skin, the eyes, forehead, scalp. Too obvious? Fuck you. It’s always too obvious to me.
Migraine a scratched out, scribbled mass that throbs with the beat of another cruel heart. Laser-etched permanently in pulsing grooves carved in places that only the migraine can uncover again and again. Migraine grammar twists tighter and tighter until nothing escapes the knot, not even meaning.
The pain organ is neuro-endocrine but only rarely chemical. It communicates with the bod via quantum tunneling (like photosynthesis, like smell) and cannot be seen with current imaging technology except as a possibility. It has been guessed at, its shadow glimpsed in MRIs, the sketches of pain victims. It is often mistaken for a tumor, but its removal results not in cessation of pain, but its increase as it escapes into the rest of the body. Occasional its removal results in death. Pain cannot be contained; it always has a remainder.
Accepting my chronic illness isn’t some inspirational meme shit. It means knowing and accepting that a lot of my time is not going to be ‘productive’ or ‘valuable.’ That my body is not the kind of body valued and consumed by our culture anymore.
It’s letting go of everything you thought meant something about your ‘self.’ And it’s fucking terrifying because what are you if you have no value in a hierarchical system that judges you and categorizes you based on how valuable you are (how well your body fits in the beauty and health system, what kind of work you do for others to profit from, etc.)? You have to figure that out. You’re in the real frontier. Be careful you don’t just appropriate someone else’s land, struggle, oppression. Find your own way, your own place somewhere beyond ‘value.’ Value is just a convenient way of converting you, your body, your work into $ for someone else to take. We don’t even know how to talk about the things we do, the bodies we do them with, without using that term or something related.
People read Marx and think of factory work, of profit off of that labor. But it’s about profit off of every aspect of our lives. Every move we make with these bodies or don’t make is money for someone else. You think you own your body until you’re ill, then you begin to understand that it was never yours and maybe you can do something about that by not doing anything with this body that refuses. This body that is simultaneously worthless and invaluable.
My body used to be the entire world, the universe, until you happened to it and showed me that there were things out there that could also be in here. That there are things bigger than me that I am inside already. That I could be consumed and still live. You are still consuming me and I, you, like some binary system. But one of us is not always the black hole, the gravity sink, and one of us is not always the smaller star. We orbit. We erode.