The reason you cannot talk about central pain is that you cannot explain who you are.
Who are you? Are you who you are, or used to be, only now with pain? No, that would be impossible. As Wendell Berry pointed out in “Another Turn of the Crank”, when an ecosystem loses a species, it is not then that ecosystem, minus one species, but it is a NEW ecosystem.
Central pain is this way. One cannot explain it to a listener, even one who cares, by saying, I am me, plus central pain. Severe chronic pain changes, reorders, redivides, and reorients everything. We have talked elsewhere at this site about the loss of identity which it causes, but “loss of identity” is still too vague.
It is not unlike the medical student’s question of whether in a brain transplant, a body would be receiving a new brain, or whether a brain would be receiving a new body. Pain really changes things. Has the body acquired pain or has severe central pain acquired a body? A figure of speech of course, but even doctors rarely comprehend what they are dealing with in someone who has reallly terrible CP. The shifts are more than a mental sea change, they are a journey to an alien land, possibly even an alient dimension.
If we are alien to ourselves, something major is missing. Where did it go? What is left is not us minus that part, we are something new, and in many ways unidentifiable, unfamiliar, and sometimes, terrifyingly strange. And so, how could you begin to explain who you are, really. Amnesia of former emotions is not too far off the amrk. We know it is us, but we cannot identify what is missing, but there is sufficient gone not to feel familiar with who we are. That person cared about many things, this person mainly just wants to avoid pain.
Does one child with Down’s syndrome differ greatly from another in appearance, or are the similarities so great that they may be recognized at once as sharing the same condition, much more easily so than by comparing them to their parentage for identification. (I say this as one who had a sibling with Down’s). There are other medical syndromes with similar effects. Premature aging, Turner’s syndrome (XO), and other states certainly leave their mark on the appearance.
With central pain, there is quite possibly also a mark on the thought processes. Does one person in severe pain resemble another with severe pain more than they resemble any other person or group of people? We don’t really know of course, but it is time for medicine to stop treating those with Central Pain as normal people, who happen to have pain. It would be more accurate to perceive us as organisms with severe suffering who are also humans. Not that we don’t want humane treatment, but condescending little bits about “hanging tough” or “It is God’s will” or the even more curious “You are so lucky, you could be paralyzed” do not begin to apprehend what it actually means to the human psyche to be in severe pain.
Berry points out that the words “heal”, “whole”, and “holy” come from the same root word in the Indoeuropean language. By comparison, those with CP are unhealthy, divided, and unholy. “Physical pain is the greatest evil”–Augustine. We are conscious of the “division of our body and our world into parts”. We are fractured. We cannot describe what terrible pain means, because we do not understand it ourselves. Therefore, we cannot tell you who we are. Healing involves the preservation of intactness. We are the opposite of that. In this state, it is not helpful to be accused of mental weakness leading to pain, since nearly all of us were perfectly strong mentally prior to the central pain, which had a specific onset, with a specific injury, which was not to the will, but to the nervous system. If you tell me my central pain is merely mental weakness, you do not understand me at all, but even if you realize it is a chemical derangement in neurotransmission, you still do not understand me, as I do not understand myself. We will both come closest however if we think in terms of division and disintegration.
If you heal me I will become whole and show you God’s spirit preserved in me. As for now, I am of all men most physical. Do not talk of spirituality and healing. As Berry says, that is a myth from a time of dualistic thinking. “The way to respect the body fully is to recognize its materiality” If you want to consider who I am you must think in very reductive terms, for I am not whole, not healed. I am not a normal person, plus central pain. I am an organism with central pain, who happens to be human. I am still human, but if you wish to view me as a whole, you must first heal me. Now do you understand what central pain does??