Many years ago, there was a popular song which talked about how love might be defined. The tune ducked the whole thing and said “Happiness is just a guy named Joe”. Cutting everything to the absolute core is known as “applying Occam’s razor”.
We have all sat through lectures that were so tortuous and complicated that it made our heads ache. Even if the subject were cosmology (the science of everything) we still wanted the speaker to just give us the core stuff and sit down. “The mind can absorb only so much as the seat can endure”.
In the fourteen hundreds there lived a Franciscan friar, the Earl of Ockham, whose rules of “nominalization” (getting down to the simple or nominal part) are now called “Occam’s razor”.
Earl Ockham himself was an advocate of reductionism. His idea is sometimes called the “law of parsimony”, which is to say when more than one explanation for a phenomenon exists, choose the simpler one. Our souls all delight in simplicity. We would love to apply Occam’s razor to central pain, so people could “get it”, but some things cannot be made simple. We cannot say “Central Pain is just a pain named Joe” although of course that is what both the public and our doctors demand. Why is this? It is because ordinary pain IS just a pain named “Joe”. Ordinary pain is such a clear, clean thing, with a few variations, but basically it hurts–pain is just a sensation named “hurt”. This amazing precision is due to the fact that such huge resources in the brain are allocated to pain processing and refinement.
Just as a fine radio can be tuned to precisely the correct frequency, to give sound virtually without distortion, ordinary pain is a marvel of accuracy, definition, and memorability. “Pain” is just so beautifully simple. It is approximately equal parts dimension and suffering. The dimension part helps us sense how much attention we have to pay to it. Why would anyone go and mess “plain vanilla” pain up by making it into “central pain”, which is about ninety percent agony and ten percent trying to guess what the sensation is which is driving it (other than the burning, which is certainly recognizable, somewhere there in the mix)?
Even the burning has its defects, however. We cannot tell if it is consuming our flesh, is wreaking tissue damage, or what. Neither can we tell exactly what it is which is driving the burn (cold is just as likely as touch) nor can we predict when it will fire up the most. It is therefore only marginally honest. In its functionality it is just as deceptive and elusive as the other central pains. It lies, it feints, and mostly it takes away the feeling that our body is ours. Someone or something else has our nervous system and is wrecking it and we are powerless to stop it. The noise and symphony of life has been turned into the racket and ear damaging cacophony of a brass foundry. Life is the sound of hell, and our skin has crossed over to the enemy.
Animated life has recognizable patterns, the homeostasis and environmental stability necessary for survival. A notable exception, central pain has uncertainty, agonies coming from every direction, burning, shocks, distentions. cramps, pins and needles, muscles which warranty pain from every movement. CP is like the wind, as it were, “It comes from where it listeth and no man can tell where it goeth”.
Scientists say that a huge meteor, named Chicxulub (curiously, the meteor was Mayan, hundreds of millions of years before the Mayans were Mayan) hit the earth, carving out the Gulf of Mexico, blasting out a fireball which swept the earth of dinosaurs, plant life, pretty much about everything except sea slugs and mosquitos. The point is, nothing was the same. Central pain is our sensory Chicxulub. It seared away our identity, our perception of pleasure, and things have definitely never been the same. We aren’t just sick, we have been parasitized by pain. In a sci-fi movie, we would have been sacrificed as too far gone for the good of the surviving crew who could only give up on any rescue and shudder at what the monster had done with our corpses.
If Occam’s razor were sufficient for everything, we wouldn’t have courses in things like physical chemistry, molecular biology, or astrophysics. Neither would we need marriage counselors or religious leaders, for that matter. On the one hand, all the law and the prophets ARE reduceable to treating our neighbor as ourself, but this does not comprehend the mysteries of eternity. One is a guideline to living. The other is the mind of God. One could not, for example, know how to build an ark from the mere idea of being nice to people. There are practical matters to be worked out in religious living, and the trick is to do what has to be done without sacrificing the core idea.
In the same sense, all you really need to know about central pain is that it is the worst pain state known to man. That actually suffices for those who have it. When you are in severe pain, your mind is not sightseeing and taking notes, it is suffering and hiding in any way possible. Since CP has no accurate vocabulary, however, the list of circumlocutions can get pretty long. Every word pertaining to suffering and physical discomfort is applicable as well as most of those descriptive of emotional suffering.
We would be just fine with saying “unbearable pain”. It is the public which insists on complicating things. You cannot go around speaking of indescribable torture without justifying such claims. Just as the public expected Christopher Reeve, when his life was blasted, to go out and single handedly solve spinal cord injury, they expect those in the throes of agony to go out and unravel the mysteries of pain chemistry. This astonishing passing of the buck to those who are sick savea a lot of work for the well, but it says little to recommend their compassion.
May they carry their flat screen TV’s with them to the hereafter so they can demonstrate how they justified taking up space on earth. Yes, I really enjoyed “The Batchelor” while my neighbor writhed in agony–how was I supposed to know? The second rank of the chorus can be the neighbors to Auschwitz, who were unaware of what was happening a few miles up the railroad track. There was this odd smell, but odd things, like odd pain, can be ignored without any injury to the conscience.
The man on the street (and in the white coat) imagines he can comprehend a damnation which is understood only by those who experience it, so we try to oblige the diploma’d ones. They seem to think we owe them an explanation, and no doubt we do. We are too sick to really care, and so sick we desperately need help, but outsiders can never really become insiders.
When we tell them they just cannot understand such pain, they are likely to say, “Oh pain! Why of course I know nothing of pain, I who have burned my hand, been shot, been bitten by a shark, slammed my finger in a car door and had several severe paper cuts” or whatever. The sad truth is that with respect to severe central pain, they nevertheless do know nothing. CP is outside the bounds nature ought to have allowed. It is not only a “pain beyond pain”, as neurologist George Riddoch stated in the Lancet, central pain is a pain without words or visibility. Molecular aberrations have this nasty habit of being too small to see, but they can certainly get the pain job done. If you cannot SEE glutamate in the synapse, how do you know if I have a little of it or tons of it. You cannot, and therein lies the problem.
Mary Shelley created a memorable creature in Frankenstein. This unfortunate who was made up of other men’s corroded parts, represented the “ultimate other”. Central Pain could just as easily be called “Frankenstein Pain”, the ultimate other pain. These terms would convey some clue to what is going on and why they are not going to understand; and will, in the end, isolate and reject us. Eventually we will prove untrue to words we borrowed from ordinary pain, but they were the only pain words available to us. When our suffering is so much greater, we have passed a boundary which connects us to other humans through words.
They want us to apply Occam’s razor to our descriptions, but no matter how long we speak of CP’s aspects, we are just getting started. Do we speak of the mix of sensations, the loss of working memory, the fear, the confusion? Where do we start? Central Pain is not only more different than people imagine, it is more different than they CAN imagine.
Somewhere along the line in the history of central pain, people like the great John Bonica (who invented the epidural and was also an early contributor to the painonline database) began to realize how complex central pain really is. It had been worse, much worse even when Bonica was entering medical school. Back then, many people seriously believed Descartes’ old idea that pain was simple, like the bellrope by which he signalled his servant living in the bedroom above. Bonica looked and saw a huge chemical apparatus running the pain machine. Hiding behind pain’s apparent clarity were systems so complicated, scientists hardly knew where to begin studying it, let alone how to block the hydra headed monster.
Central pain is an illogical mix of pain sensations, frequently in large measure. When something holds together or has form, it seems to make sense, but in a jumble, it may take decades of study to make any sense out of it. An uncle on the farm used to joke, “After you finish a plate of chicken legs, it always looks like there is more than when you started?” Bones upon bones—if you hadn’t seen a chicken before, you probably wouldn’t know what one looked like afterwards. CP is more shrimp gumbo than it is shrimp, so calling it “pain”, which has known dimensions, is misleading. It just gets worse as we bring the components, using other off-the-point words. Occam’s razor isn’t going to do very much for that mess on the plate. You just wash it down the drain. It doesn’t solve the dilemma of description or trying to understand a pain which is a MIX and very diffuse, but it stops bothering the listener.
And so it is with trepidation that we approach the pain specialist’s office and with which the caring doctor receieves us. Our description are going to be one big mess, and there is more than a little likelihood everyone will give up and wash the whole thing away with a good stiff dose of the Book of Job. Opiates sedate, but they have never been shown to cure central pain.
Although the pain frightens us, because we don’t know if we can handle it, we aren’t trying to frighten others. We don’t want to be like Frankenstein, although secretly we know perfectly well that is what we are. We are certainly not human. A human has control or awareness of her own body. No one with central pain has much of an idea what is going on, only that the agony is too much. The sensation of acid burning under the skin floats out from the carnage of the nervous system, but the simplicity of that feature is deceptive. It misleads the listener into thinking there are not several dozen other painful things going on as well. Muscle pains, lightning pains, pins and needles, diffuse pain, movement pain, on and on it goes. Painting a verbal picture of it is like painting a picture of a junkyard or sanitary landfill, minus the sentimental focus on one old shoe poking out from the debris, that one thing that gives it an element of humanity. You cannot define a dump by any one item, and you cannot define central pain by any single noxious sensation.
Imagine the unpleasant sensations that are possible and those you think are not. Mix them together, submerge them in acid burning, and you have central pain. Make sense? Hardly. Yet that has been the mission which Dr. Patrick Wall saddled us with. Try to assemble the verbal descriptors in a way that would make sense to and assist researchers. Hence, the inception of the painonline database.
Then, having to help, Pat Wall got cancer and died. That saintly man, the one who actually cared like no one since Bonica, was taken from us. Francis Crick soon followed him. Bonica had passed on long ago. Alone again. Now we have no one. Frankenstein is left to wander the earth alone, his creator (descriptor) no longer part of his life. We still have Tasker and may his days be prolonged.
Doing as best we can, we attempt to explain central pain, either because others demand an explanation for our nonfunctionality or because we would just like a little human company. The task of forming and gathering is not easy. People in severe pain have more to worry about than being literarily articulate.
Let us compare the situation to a coutry woman whose mother died when she was young, when they were too poor to afford a camea. “If only I had a picture of my mother I could explain what she looked like”. My children want to know. Having pretty much abandoned the idea I can do this with words, I want to find a picture of someone in a magazine who reminds me of my mother. I will show the kids the picture and say “Your grandmother looked like this”. Eventually I found a picture that was a little familiar. This satisfies them, more or less, and eases my longing a little bit. However, they still don’t know what mother looked like. I could have just as easily have found a puppy whose deep eyes reminded me of the world of love that was in mother’s eyes.
It is the same way with central pain. Because there is no vocabulary (words being code for some shared experience which has meaning because people can agree on the shared nature), there is no way to describe central pain, and words available do not inherently match the sensations anyway. Attempts to describe what salt tastes like to someone who has no taste buds are more or less futile. And so we borrow and we borrow and we borrow from the world of ordinary pain, hoping the doctor can at least get enough of an idea to give us something for the pain. The closer we get to the bizarreness, the less concern and medication he will dispense, so we stay on the familiar and misleading aspects characteristic of ordinary pain, so the doctor doesn’t think he is in la-la land and that we are dancing a dance of insanity. Central pain IS insane of course, a pain system which has lost its order, but our response to it is not insane and we must someone bridge the gap of understanding.
What would be best would be if we just went into the office with a syringe full of capsaicin and instead of speaking, simply plunged the needle into the doctor’s arm and sat there while he digested what he was feeling. He would get ONE of the many symptoms of CP, the protopathic burning, and that might be enough for him to realize we are actually sick. This would still not address the scope, the huge percentage of the body which is blanketed with the pain, nor the variety of suffering. We might also shock him with battery cables, and the like, just so he would get the lightning pains, but we all know this would have its limits also. Pain hurts and it would be inhuman to torture him so just for a little understanding.
Thanks to those who have completed the survey at this site. We continue to try to inform the medical profession of the nature of central pain. Oddly, surprisingly, and hearteningly, there are those who actually listen. We have no idea why, but we are so grateful they have not forgotten us and actually wish to help. May God preserve us and reward them.
When John Bonica first realized how complex central pain really was, he proposed a “multidisciplinary” clinic, with neurologists, anesthesiologists and neurosurgeons together, since the problem wss so big one single specialist could not master it. Bonica’s approach has become the model for pain clinics. Interventional radiologists are now also an essential part of the real pain clinic. Yet, the workers still don’t know what they are dealing with except as mute, tongue tied CP patients attempt to tell them with words that do not fit. This is a losing proposition for anyone who requires a little victory in medical practice, so other pain conditions comprise the bulk of patients. The mother of all pain states is still pretty much the mystery it has always been. Only in the labs of the PhD’s who give central pain to rats, and then feel guilty for the suffering they inflicted, does the evil monster extend its evil tentacles outside its covering where its terribleness can be glimpsed. The poor little mice try to chew off their legs to get rid of the pain. Stroking the fur with a soft brush evokes squeals of pain. No wonder there are not a lot of people who enjoy this sort of work. Multidisciplinary clinics should remember that their inception was a reflection of how hard it is to grasp nerve injury pain, not as an answer to the whole thing.
Most of all, they cannot become frustrated with the CP patient because we cannot suddenly become so articulate that we finally solve it for them. The pain system can go wrong in a lot of ways. We may feel some or all of those ways, but until you hand us the words for each of them and provide us the time in the clinic to address the subtleties of each one, you will have to thread your way through the dense collection of verbal descriptors found at sites like this one. It will not be easy. Put away Occam’s razor and Procrustes’ bed. Central Pain is a big disease, as big as illness gets.
Once again, our doctors, it includes the feeling like acid under the skin. Why don’t you inject a little of it under your own skin, and we can begin from there on the road to understanding, bypasssing the poverty of language. Don’t want to inject acid? We didn’t think so. Maybe you could try something else. Come on, burning is just ONE of the central pains. Here’s some capsaicin, just in case you change your mind. Start out small, maybe on your arm, and then work your way up to the entire body. Then we can do the lightning pains and the visceral distention pains, pins and needles, kinesthetic dysesthesia, and all the rest. Go on. You only live once. Get to know “pain beyond pain”. If you don’t see for yourself, you will have to take our word for it, and we don’t have any.