It is nighttime. The rest of the house is sleeping. Someone with Central Pain is struggling to find distraction from the pain. The burning from touch of the sheets has either kept her from falling asleep or has woken her up in an inferno. Who called night restful?
She would like someone to reassure her, to steady her from the shock of crawling out of the napalm spa CP has just treated her to. Everyone already puts up with quite a bit from her CP so she won’t wake them, even if she feels so very alone. But where is the distraction. How does she put aside the shock she has just experienced? She must be quiet and lay there while the monster devours her heart. And in the morning, she must blank out the memory and be human again.
Five years into CP, the nights were psychologically destroying me. Waking up in “incinerator mode” as the sheets had been on my skin for too long, was becoming so devastating that I could not psychologically face it. The repeated horrors had made me detach. At first, the clothing had gone, then I tried some fabric lighter than sheets, then the windows were thrown open during the bitter winter. Still, the terrible burns came and my mental status went.
This was the “evoked” burning of touch/temperature in CP built up too long, The fury and rage of SOMETHING that shocked me as I came awake, coloring my dreams with hell as I woke up into consciousness. Hours of staring, and suffering. It all left me a very long way from myself the next morning. It was nauseating, painful, and simply more than I could bear. Why wouldn’t tolerating the cold help my burning? I shivered in cold as the acid burned into my skin. This was what damnation felt like.
Then, one night, in another of these agonies, I staggered into the shower and in my exhaustion, forgot to adjust the nozzle. The water came on warm. My first thought was an expletive deleted since in the middle of a burn, I didn’t want any heat on me. To my surprise, the warming water began to COOL my skin. What the heck?
It was then that I realized once again, what a liar Central Pain is. It always is, and the brain analyzes the sensations without a template, without intuitive processing. I had burned at first from light touch, had attempted a thermal solution, only to have had thermal sensitization make things worse.
Why had my reasoning power been so loaded by sensation that it was a positive hindrance. Why could I not figure this out earlier? I guess it was the loss of “working memory” or loss of K that is now being described with disorders of the thalamus. Maybe it was the fact that the voices of pain were false. I cannot shake the assumptions that perception gives some reliable indication about stimulus. Then again, I can’t even tell where my skin surface is, so why would I think I could trust my nervous system. I cannot trust it, meaning I cannot trust me, and must allow the two processes inside to argue it out, until something seems a little clearer.
The excess cold had been converted into the sensation of burning. CP is, as the Germans say, “Cenesthetic Pain”, meaning one pain can substitute for another. The pain is just so freaking real though. You cannot tell what direction the shot was fired from. Perception does not match stimulus and so you get conned. I will try not to fall for the shell game again, but probably already am. I got a room heater, I could sleep again. The touch pain is still there, but at least I backed the thermal pain into a smaller corner.
Another lie exposed, except it was my own body lying to myself. What kind of condition is this. How do I talk about it.
I check other things out later on. Sure enough, that burning on my legs when we travel is the air conditioner blowing on my skin. How could I have missed this clue? IF I tell my family, they will just say, “If it is so bad, why haven’t you noticed this before?” They do not understand the disconnect that occurs between cognitive reasoning and perception when you have CP. It is like a child who tells herself her mother actually loves her, even if she is a drunken brute who slaps her.
I must reexamine everything, start over from scratch. I learn a little more about my CP from every epiphany like this, and the researcher I write to learns a little more. Why hasn’t this all been threaded out in the past? Why do Dejerine and Roussy have to be dead. I could tell them and I know they would jump on it and lay it out there for every CP person, so we won’t have to endure any more than necessary.
Why did Bonica have to die? He did so much for women in labor with his epidural discovery. I know that saintly man, who pursued CP, and who first diagnosed me, would want to include this in his repertoire of published aspects. Why do these experts have to die, just when they are about to become angels, who heal me? At least I have Dr. Patrick Wall [now dead...ed.]. Why do I have to learn everything for myself? It’s like diagnosing your own heart arrhythmia while you are mostly passing out and gripping your chest.
Nights are still awful. It takes hours to get any sleep because of the wakeups, but heavy sedatives and warming the room a little have been of assistance. I have no comfort that this will help me explain Central Pain. Nothing will.
God bless Clifford Woolf, Jorgen Boivie, Tony Yaksh, Annika Malmberg, Claire Holsebosch, William Willis, Frederick Lenz, Michael Rowbotham, Howard Field, Ron Tasker, Marshall Devor, and all the others who are trying to defeat this evil, as I am weak. This one day consumes my strength, and the night, even more.
