[This is my post for Blogging Against Disablism Day. I will also have a post on my poetry blog, once I get around to rounding up all the poems I’m going to put in that post.]
I reach out for my body. It’s an instinct, all young ones must have it. But instead of feeling hands and feet, I feel a blast of burning pain, like stepping into an oven. I retreat back to the murky ocean I float in all the time. The pain is off somewhere distant, but so is my body. “Thoughtful” is a word I hear used a lot, when I stare off into space disconnected from my body.
Later, psychiatrists will call it severe dissociation. They will diagnose me with dissociative disorder, not otherwise specified (DD-NOS). They will talk about a ‘biological predisposition to dissociate’. Even when the extent of pain I am in comes to light, they have trouble seeing the dissociation as a symptom of severe pain, rather than a thing in its own right.
Dissociation got me through 20 years of severe pain. 20 years in which by all rights I should’ve been curled up in a ball doing nothing, yet I was active, I was doing things, I was going to school, I was climbing trees. I didn’t know this was severe pain, I thought it was just another feature of the world. Trees have bark and my skin burns, the sun shines and my skin burns, the sky is blue and my skin burns.
Now they say my mother has small fiber sensory neuropathy, that maybe I was born this way, inherited from her, however our nerves got like this. It responds to Neurontin, and Lyrica, and Trileptal. It acts neuropathic, it acts like central pain, nobody knows which is which for me.
This is a shout-out to all the kids — all the kids living with so much severe pain you wouldn’t believe it yourselves, because it is your normal. And you go on trying to do normal stuff. And sometimes you can’t. Sometimes the pain just grips hold and you have no means to deal with it. But you don’t know you’re in pain, so you push against it, and you think you’re weak, everyone else can do this, why not you?
Why not you? Because you’re in severe pain and you don’t even know it. You may not even recognize it as pain, because pain is such a broad and nebulous category.
My heart goes out to every single one of you. All of us who are going through this now, as children. All of us who survived and made it to adulthood and now know how much pain we were in, and wonder how we got through it. All of us whose pain is being treated as DD-NOS or another psychiatric disorder, because all people can see is our emotional responses to pain, not the pain itself. All of us who are told ridiculous things like “You have pain that gets less on Neurontin? The pain must be part of a seizure.” All of us who are told that if we were really in pain we wouldn’t be able to do what we do now… they throw our expert coping mechanisms back in our faces, and want us to see pain psychologists who will teach us everything we already know about how to manage pain.
Everyone in this situation — I am thinking of you tonight. Together we form a whole constellation of pain, burning bright. And however well or badly we are dealing with the pain right now, we are people who are surviving.