When CP is agony, why be upbeat?
The perceptions of those around us require that we meet them halfway in order to communicate. One example of this is how we speak of our CP to others. CP is completely outside the range of possibilities found in the mind of the average human. It does not program to say we are caught in terrible pain forever, a type of pain that cannot be described.
We had the same shock when we found ourselves in this condition. Why should we expect others to be different when they have never felt the burning, never clinched at the shooting pain, never squirmed at the relentless pins and needles, never frantically tried to escape temperature extremes, never tried to suppress the awful burning and nausea in the gut, never tried to ignore the acid which fllls the bladder, never tried to avoid the touch of sheets or clothing, or never forced a burning muscle to move. Why should any of this make sense to them, when it does not make sense to us.
We simply have to moderate our comments, for our condition does not even match the average person’s idea of what might be possible in nature, let alone actually present in us. What do we say to the question, “How are you today” or “You must be feeling better”. These questions are so out of context for a CP sufferer that we could never communicate on any level unless we tempered the pain to a large degree.
Being upbeat about CP is not hypocrtical then. It is the act of communication. People must be led slowly to realize what our words mean. They need, as the saying goes, “milk before meat”, just as a baby must be tendered in order to deal with tougher things. CP is about as far as the human organism can go and still claim to be human.
Something is wrong in the nervous system. The genes are pouring out ion channels to make the neurons generate action potentials at higher frequency. The protein carrers of inhibitory ions, such as KCC2 for chloride, cannot be manufactured by injured neurons, thereby designating all functioning fibers in our injured nerves as excitatory only. A neuroscientist in the quiet moments may well have speculated on what this might mean for us.
He may actualy peer down the long corridors of sensation and discern from what he knows ,about the chemicals in action, the malevolent mass which lurks at the end of the tunnel. We can probably trust the pain researchers not to freak out if we tell them what it is like to have acid poured onto our sensory nerves, to have all the pain fibers recruited.
He may well put on his lab coat, look through the patch clamp lens, and peer down the dark shaft of suffering into which the pain has cast us. so that it may feed on our life processes. We can see his light from where we are imprisoned. If he would just come a little closer.
The scientist has perhaps suspected it even before we tell him/her. She has seen the little mouse to whom she has given neuropathic pain writhe in agony and attempt to escape the pain by chewing off its limbs. The speed with which the little animal does this is an accepted parameter of nerve injury pain, the familiar “autotomy index”. Yes, our champion is the little Sprague-Dawley lab rat. The impact on the rat has perhaps made him feel guilty at his work, until he remembers that humans are in there too, and he has no other way to get at the evil. Walking through this ethical gate, the scientist intuits our experience and we may not even have to explain.
For everyone else we will have to be upbeat enough to lead them into our house, and then open the door, and show them our little chamber of horrors.