Continuing on the need to avoid stress in Central Pain, we emphasize that any resentment of those who do not understand Central Pain adds unnecessarily to the stress of pain.
Pain. What to say about it? There is nothing like it. At its extremes it seems able to extract not only the happiness but also the goodness from a person, even those we call saints. It is said martyrs have felt no pain or were not deterred by it, although we suspect the stories of their ecstasy in the flames were perhaps exaggerated, and that the accounts were written by those who did not join them in the fire. Yet, martyrdom is NOT living with pain of a long duration, it is the enduring of it for a shorter period. Over time, pain has an extraordinarily powerful effect on the attitude and the personality.
Why should pain exist? It has a role in protection. Like any other thing, it can go wrong, terribly wrong. The mechanisms of this process can be used against us, and even our own nervous system can mistake what it is about, inflicting pain on us relentlessly, by pouring out pain exciters, unable to stop their production. That is, of course, central pain, the continual gene expression of chemicals which excite pain within the nerves.
Why should we live in a universe where this is possible? We have attempted to answer this before, because it is a question which every pain sufferer asks. Previously, we have said that life requires as it were, “things to act and things to be acted upon”. This has been called “opposition in all things” but really is just inherent in what we call life. How would we know we were happy if there were no sadness. How would we know we were alive if there were nothing which refused to move. How would we have choice, or free will, which gives us the nature of an individual if there were no choice, if everything were scripted, right from the start. (Even the scientists have begun to say that a universe must have unpredictability, the so called “quantum” theory of matter and energy). We would be nothing more than robots without agency, and there would be no joy. Through some means which we do not understand, religion teaches that as a result of passing through this mortal experience, to gather such awareness and perspective, it will then be possible to find an existence where God overcomes suffering.
How this is possible while retaining our individual identities we do not know, but presumably, free agency will not be extinguished, even then. Logically, the tears and sorrow should continue, but all religions speak of a better place, a condition of peace. All also say it was necessary to pass through mortality to understand and appreciate free agency. For some, this passage or test turns out to be terrible, but the scriptures say God will make it up to us. And so we cannot proceed without some measure of faith. In the midst of severe Central Pain, it takes quite a bit of it. However, if there is no God, there is no us, for we are not individuals, and there is really no division between the energies which exist in the universe, which itself does not exist, because a universe which includes the presence of things which act and are acted upon implies life. Life implies individuality. And so there is a circularity, amongst which is the possibility for choice, or where things don’t go according to strict order. The baseball thrown at my face will not be deflected. Life is not “The Truman Show”, if you saw the movie of that name. This can be the only explanation of why God would allow, for a time at least, the presence of pain. This does not mean He does not also provide a way to control it scientifically and medically so it does not ruin us. He organized structures to register pain in the body, but He also gave mankind the intelligence to find medical treatments and cures for pain when it is an illness, and not a protection.
We don’t claim this does a good job of explaining the angst of life, but no one else does such a good job either. Suffering is deep doctrine. We, perhaps most of all, must ponder it, and accept it at some level.
Pain can turn a devoted loving pet into a vicious animal who will bite the one it loves. At first reaction, perhaps it does the same to us, but we have an intelligent choice. We are not simply creatures of instinct. Chronic pain has a bad effect on humans as well. Their personalities change. One cannot really blame them. It is a mistake for anyone with chronic pain to assume they are the same person as they were before the chronic pain state. No one is.
One of the peculiar problems with pain is that it is so personal. No one nearby can sense it. It is a construct of the nervous system, a sensation the brain creates to warn us, to make us move, to force us to protect the integrity of the organism. Life defends itself. These pain chemicals are unique to US, confined within OUR cord, and OUR brain. Only recently have radiologists gained the ability to see pain in the insular cortex. It was Francis Crick, in deep pain himself, writing here for painonline, who was among the first to identify the location of painfulness in the brain. The discovery of pain’s lair is very recent. The public has not had time to react. They don’t know where the insular cortex is, and neither do most doctors. Like the insula, which lies hidden on the brain’s surface, the location of pain suffering has lain hidden for many years, but its hiding place is known, and the control of it will surely soon follow.
Marshall Devor, a correspondent and supporter of our quest here, has recently discovered, along with Sukhotinsky and others of his colleagues, a place in the mesopontine tegmentum (midbrain) where injection of phenobarbital causes loss of consciousness, as in general anesthesia. See J Comp Neurol. 2005 Sep 5;489(4):425-48. This is surely radical since general anesthesia has always been assumed to be attributable entirely to the higher brain. We are on the trail of pain cure.
The observer really has no way of determining whether the person is even in discomfort. Possibly the person is merely a complainer. Perhaps they are lying to get sympathy. Perhaps they are a sinner and deserve it, even if they do have pain. And so the person in pain typically does not receive comfort. They have the pain and in addition have no empathy.
This double whammy is too much for some people, for many people. They may even become angry at God, at least for short periods, since rationality reminds us not tp be angry at the ONE being who actually knows we are telling the truth. This tendency, to strike back mentally at others who doubt or criticze is NOT good for the Central Pain sufferer. It adds to stress and therefore, adds to the pain.
How can one be tolerant toward the intolerant? How do we avoid hoping that the blind and unsympathetic other might become miserable like ourselves?
Let us look at the word “devil”. The South American cowboys use a long rope to which are tied two balls, the well known “bolo”. It entangles the feet of the cattle, or other animal, so that they are is trapped, and generally fall. The word “devil” is cognate with the greek word “diabolos”. This means literally, “to hurl”. “dia” means against, “bolos” means to hurl.
In other words, the devil is the one who hurls accusations against us. Now why would any being enjoy doing such a thing? The devil is said to hurl accusations against us, and to tell us we are no good, thereby encouraging us to do evil. Whether one accepts the devil as a being or a concept is not important. What is important is to consider the nature of such an entity.
The devil is said to desire that all creatures become “miserable like unto himself”. Why would he want that? First of all, he must be miserable himself, to qualify for such an attribute. So far, we sound a lot like him. If there are any humans more miserable than the SCI person who has severe Central Pain, we are unaware of it. Next, he must resent our apathy toward his condition. There is certainly one way by which he can salve that anger, by placing us in the same spot. Augustine taught, “Physical pain is the greatest evil.” If so, there is a great deal of evil about our condition. It would be easy to make it part of ourselves, our inner nature. The suffering person cries out in rage, and it is rather easy to direct that rage at others. In the case of the devil, he is said to be the cause of his own misery. In the case of ourselves, those with CP, it is different. We did not cause our own misery. Yet, we must curb the desire for revenge on those who treat us with contempt for claiming to have pain. It would not help us if they joined us. We need healthy people to conduct pain research.
We must let it stop there. We must not seek to see others become miserable like unto ourselves. This means we must not become angry when some ignorant, rude, or accusatory person claims our pain is fake, or that it is God’s will, or that we had an important lesson to learn, or refuses to take our pain or ourselves seriously. We hang onto life in the face of pain. We need every ounce of energy to survive it without losing our sanity. Stress is a drain on energy, a black hole really. It drains life until there is nothing left. Pain cannot do its full damage unless it is accompanied by its partner, stress.
That is why the National Institutes of Health has stated that there is no satisfactory treatment for Central Pain, and that it is essential that stress be kept from life as much as is possible. Stress makes pain worse.
We can endure pain without wishing that others were like us, just so they could suffer too. It is natural to feel this way, because then they would understand. But being understood would NOT stop our pain. It would only add to the total misery in this world.
And so, we must learn to become deaf to the accusations of others regarding our central pain. It is clearly real. Experimental injury to the cord induces central pain in animals who display the same characteristics that we do. They have giant outpourings on MAPK, PKC, prostaglandins, fatty acids, BDNF, metabotrophic glutamate receptors and other pain exciters in the spinal cord. The actuality of our condition is not in doubt in the world of science. Our problem then is with our neighbors.
Martin Luther King said that our greatest problem was not the accusations of our enemies, but the “silence of our friends.” Not only must we overlook others who accuse us of exaggerating our pain, but also those who say nothing at all to comfort us, to encourage us, to help us, who make us feel we are entirely on our own.
It makes no difference whether the “other” is our doctor, our spouse, or a stranger. We must forgive them, must be tolerant of them if we are to avoid acquiring devilish characteristics, if we are to avoid desiring that others might become “miserable like unto ourselves”. This does not mean we must turn into sheep. It is admirable to fight a good fight in behalf of pain research and to be advocates in all places for those in pain, whether the audience is receptive or ridiculing. What we must not do is lose tolerance for other human beings.
Do we hurt like the devil? Yes, of course, like no one else, and for a longer time than anyone else, for the remainder of our lives. Does that mean we have to seek his revenge, his rage upon the human race? Not at all. As evil surrounds us, we can immunize ourselves somewhat against the stress it causes, by refusing to waste a particle of energy wishing evil against others, even if they denigrate our suffering, reject our petitions for help, and ridicule our claims.
Love one another. You do not really want others to become miserable like unto yourself, even if it might bring the satisfaction of their recognizing you were right, you poor devil. Vengeance is a job for professional devils, not amateur ones like you.
Dissenting viewpoints are welcome, but you will be stressing yourselves out if you do.