Thanks to all who have taken time to fill out the survey. Please keep submitting your answers. What can we hope from it?
Not long ago, someone remarked that certain recountings of physical suffering often lacked introspection. It is true, of course, that physical suffering is more or less OUTSIDE the realm of introspection. Our reactions to it can also be difficult to plumb.
They think we owe them a happy ending. We think they owe us a blocker of the Nav1.3 sodium ion channel. This movie would play poorly at the box office. Our disease is blasphemous. Who are we to accuse Nature in this fashion! The information is as welcome as the news of a large Asteroid aimed directly at earth. They do not want to think we are at hazard in this big universe with inescapable evil upon us, and so they do not want to hear anything inconsistent with the platitudes. WE still believe in God (we see Him in the work of Hains and Coull) and feel our symptoms are no threat to anyone’s belief.
This continues the theme elsewhere addressed, that attempts to view pain as psychological are holdovers from an era when psychology itself was not recognized as chemical in nature. This recalls to mind the statement anciently of Heraclitus that the spiritual voice is never in good operating condition in ailing mortals.
CP is NOT the universal human condition. In fact, it is an outlier if any condition ever was, orbiting further out from the center of human experience than death itself.
When one considers the difficult task of saying anything other than an utter, meaningless platitude when death is the subject (eg. “at least he didn’t suffer”, etc), it is no wonder that we can hardly make an intelligent remark where Central Pain is concerned. We certainly cannot say anything of an introspective nature about it.
The purpose of the survey is to bring the components of Central Pain into highlight. It is to DEFEAT attempts by clinicians to analyze the CP experience in terms of introspection, or any psychological milieu, other than the obvious one, that pain hurts. The platitudes apply more predictably to those who listen to us, to whom much of what we say is worthless, because they cannot test it.
We have elsewhere recommended a small injection of Capsaicin for all pain doctors, to give them some idea of allodynia, and to help them understand that introspection is beside the point.
What then, IS the point of suffering? We simply do not know. We therefore attempt to bypass that question, and also the question of what we have learned introspectively about ourselves (as too frightening) and simply want to recount for the doctors what we are experiencing. Meaning is beyond us. Survival is our goal, and that is what the survey is about. We want to add NO pressure from a disbelieving or skeptical clinican regarding what is actually happening in us. If we begin to speak of introspection, we will lose the battle, since in that context we will be forced to defend ourselves, and without a vocabulary for CP, that is futile. The survey is designed to put us on the offensive, away from the defensive. The minute we feel obligated to provide meaning or an explanation, we have moved out of context, and we will lose the communications battle.
With the survey, we carry the battle to another person’s turf, the clinician’s obligation to attempt to understand the physical characteristics, the signs and symptoms which mark Central Pain. This protects the damaged individual who is limping along, or sliding downward, from the harsh rejection of the skeptic. We have moved from the Dark Ages, when it was considered “good for women to suffer” in childbirth.
Now, we are attempting to move away from those who demand that we offer some introspection for what terrifies us by its reality. This suffering is NOT good for us, and we want the medical profession to think a second or two about Heraclitus and why our spirits are silenced, when the pain mounts to a high level. At that point, we must not respond to a demand for introspection, to offer or realize any meaning they may have imagined, or any other psychological pressure. What we need is a blocker for pain relief.
We are so grateful for the work of Hains and Coull. That work is being followed up on, and now the scientists are saying the unthinkable, that GABA, long viewed as the inhibitor or pain, may actually increase pain if the chloride carrier is impaired. This is light years away from where we have been.
Let us ask for the “CP epidural”, as it were, and reject attempts by any pain doctor to force us into a psychological debate. When they can provide the chemical mechanisms for ANY single psychological phenomenon, then we may decide to answer them about pain. At one point, adrenalin was offered to explain “fright and flight” but that too has vanished in the murky discovery that adrenalin is a bit player in the circus act of Angiotensin. Since they cannot explain anything to us, we reject their rejection because we cannot be introspective about things. We want treatment, medication, a cure, and we continue to see the distant doctor as having psychological problems of his own. Let them learn biochemistry, not psychology, since what is wanted is a blocker of neurotransmitters.
