Is Central Pain of any good whatsoever, to anyone?
A fairly large number of researchers, commentators, educators, and those with central pain contribute to this site. The viewpoints vary, according to the degree of pain, we suspect. No one principle is therefore applicable to all Central Pain subjects. However, it is worth repeating some of the input we receive.
The input varies. Not everyone of course is in the depth of agony with central pain, although many are. We have in the survey those whose bladder feels as if they have been prevented from urinating for hours past time, in other words, their visceral central pain is a terrible experience. There are others whose mouths burn without mercy. Some feel as if the skin has been injected with acid. Dysesthetic pain can be a real killer, even if you cannot tell where it is coming from or where it is going. It is spontaneous combustion in the pain chemicals at the synapses and although the fire burns without consuming flesh, it mimics the experience.
Others have pain in the muscles which can approach or even reach absolute immobilization, because of the pain of movement. Some unfortunates seem to have all the central pains. In this respect, the great pain neurosurgeon Ron Tasker was justified in saying that in its extreme form, central pain is the worst pain known to man. The EXPERIENCE of central pain is different from pain experiences of an ordinary nature. Somehow, a severe pain event which we know will end in minutes, hours, or days, does not empty out the soul.
However, central pain feels like immersion. Mentally and psychologically it is claustrophobic since the individual is enclosed in pain and has nowhere on the body to go to recognize what it is to be human, to feel what they have felt, what they ought to feel if they are alive. Numbness is fundamentally different. It is a heartbreaking theft of part of what made life real, but deep central pain is completely beyond numbness. It is just simply indescribably torturous.
Like all pains, central pain is more difficult to endure when there is stress. In this respect, even the most severely affected CP individual has moments of reduced stress when they can reflect. It may be superficial and it may be all too brief, but even for the most damned of souls, there is a moment when a moistened finger wets the mouth, when the central pain is somehow driven mostly out of thought, when something powerful takes over, or at least is heard knocking at the door.
And so, while we reject the idea that central pain is philosophically or spiritually good for anyone, we do feel there is a refining or simplifying of the self which is remarkable. One correspondent remarked that central pain reduces one to the elemental human. This statement, while not really of much meaning to anyone without CP, is true. Pain strips away much that is superficial in life. It can strip away too much, and decimate much of what is fundamental to life. Still, as long as the mind can reflect, there is the possibility of becoming basic, for lack of a better word.
Perhaps we should use the word humility, although many with central pain have too much rage to consider that they are becoming humble. They fear instead the development of a resentment or anger at God, which is antithetical to humble. So “humble” may not be the best word, even as it is perhaps the only word which approaches what the person in deep pain becomes. One of the advisors here has given us the same idea as “an almost total lack of materialism”, since pain relief is really all that matters. Most with Central Pain have absent or greatly impaired sexual function, so if there is no sex and no materialism, what is there? Of course, this pretends that life is composed of those two elements only, and it is absolutely true that life is so much more complex and elaborated. Mankind is complicated. Joy does not really come from either money or sex. It comes from somewhere else, but who can name it?
There are attributes which cannot be named by any other word than “spiritual”. What does Central Pain have for us in that area. Of course, if we are angry at God, it seems we are going nowhere there either. Yet, one of the chemists who has considered with us the problem, has praised those with central pain for their fundamental reduction to “human elements”. This is a little more acceptable than non-materialistic, but still not particularly clear in its essence. Recently, we asked this individual to give more input and his comments may bear weighing:
This author had the conversation when the visitor was was lamenting the exploding materialism in modern society. He referred to a commentator on the same. Dr. Holland remarked, “THINGS are in the saddle, and they are riding mankind.”. Those with CP probably take a clearer LOOK at what matters, although they do not obtain it in any obvious way. Then, the visitor quoted from a Neal Maxwell, who spent seven years dying of leukemia, and wrote thoughtfully during that period, asking himself what possible purpose could be drawn out of the rather morbid experiences of dying of cancer. In the end, he said it this way, “Suffering has allowed me to teach with authenticity”.
We appreciate the communication from our friend. It is so very hard to talk of anything good. Does anyone really set out in life to become “authentic”? Hardly. We want to follow the crowd, be free to be as superficial and worldly as the next person and to succeed at it. There are quiet moments however when we ask if there is not something more. That is when we feel something odd, something spiritual. We ask the three terrible questions. “Where did I come from. Why am I here. Where am I going after I die.” These questions are completely the polar opposite of the busy rush of life. They make us uncomfortable with our pride, our sins, our indifference to others. In every religion, in every part of the world, and in every human who does not even believe in religion, the terrible questions appear from time to time. It may be after an act which was not noble. It may come at a time of quiet reflection. And it may come when we are deep in pain. Could anything as large as central pain possibly have no meaning whatsoever.
If there is meaning, we suspect it is close to what our chemist friend has said. We can speak of human suffering with an authenticity which is ummatched. The article by Alan Hess at this site comes to mind. It is the most authentic piece ever written on pain, but it extends much wider, although it does so unconsciously.
The value of speaking or teaching with authenticity we do not know. Still, we feel it is a true principle. We live in a world of our own. We have little in common with others. Yet, somehow, we are able to see in ourselves the weaknesses to which we were blind.
The underpinnings of our pride have been removed. We DESIRE to matter in this world, and perhaps to hope for some comfort in the next life. Is this authentic or is it something else? We do not pretend to be able to lay down in words what the experience of central pain is. Still, we know at some level it is unique, just as pain is unique in this world. Pain DOES seem to reduce us to the elemental human. We find that this elemental human is not much more than dust, but we being in the position of needing and asking for help makes us different. We are long past hoping God will cure us in an instant, but we are not past hoping HE will sustain us and enlighten the scientists, and perhaps even comfort us, at some point in time. If not in this life, (We feel so lost) perhaps in the next. Can even God comprehend central pain? We cannot and we have it. Does our enduring it well entitle us to anything? This really is a fourth terrible question for us. We realize our need. We realize our lowliness, and we appreciate the genuine goodness of others toward us even as we dodge to avoid the more common criticisms of our “weakness”.
No other experience is central pain. The same experience can destroy one person and make another grow in some respect. We need time to think about this. Our chemist adds, quoting from Maxwell, “The hardest tests are given to the smartest students”. What intelligence is at the base of terrible pain? What constitutes a good grade on the test, if that is what it is? We must keep reaching out, and give where we can. We can feel animalistic in our groveling pain, but animals have some nice characteristics. Most of nature does God’s bidding, except for man of course, who routinely abuses his free agency. If in pain we must operate more on instinct than ever before, progress in life is still not shut off for us. Why we would like the word “authentic” is a mystery, but it feels close to the small, at least in our eyes, growth that has come from central pain.
It is unfortunate when we must obtain our spirituality from chemists, but we will take it where we can get it. Except for Paul, (see “Did Paul have neuropathic pain” at this site) there seem to be only sparse scriptural guidelines for how to look at pain. Paul said he prayed three times for relief from his pain, but it pleased God not to remove it, so he would rejoice anyway. This is perhaps the greatest display of a noble attitude in Paul. He must have made many mistakes, but he seems likely to have been an authentic human. He was of course put to death for teaching with authenticity, but we suspect it was worth it for Paul. We hope the pain experience is worth it for us.
AFFORDABLE MEDICINE FOR AUTHENTIC PEOPLE
Teddy Roosevelt said that America was built by people whose faces were “marred with sweat, dirt, and blood”. In other words, the country owed its unique character to authentic humans. There were some others he didn’t know about. People whose nerve synapses were marred with BDNF, MAPK, PLC, and fatty acids. These people didn’t build anything except the determination in the minds of a few to attack pain as a long time enemy of mankind. They were the people of S. Weir Mitchell, John Bonica, and Claire Hulsebosch, themselves real scientists and authentic people. In its model for what freedom really means, the freedom from pain and other ailments was an expression of the frontier. We settled the land for all mankind.
Mark McClellan, head of Medicare/Medicaid recently said health care spending will soon consume 20 percent of the Gross National Product. We should be using research to grow the national product, not consume it. Private health care premiums are predicted to continue to pace well ahead of the growth of the economy. Visitors to emergency rooms are stunned to see care rated as high as 300 dollars per stitch (ie. the suture material, the doctor fee would be on top of this), 200 dollars for a single pill, and other outrageous, uncontrolled billing. Like many companies, hospitals do not mess around, often make discussion of billing errors impossible, and routinely ruin the credit of whomever they chose. Fifty percent of ALL bankruptices in the United States were filed over hospital charges. The government obliged the hospitals seeking to recoup every penny by abolishing Chapter 7 bankruptcy (the traditional bankruptcy available for hundreds of years and still in other Western nations such as Great Britain). Many hospitals in the U.S. had their origin under the Hill Burton Act after World War II, which obliged entities GIVEN government hospitals to provide a certain percentage of charity care. Hill Burton is either not enforced at all or enforced very loosely, allowing hospitals to apply money they WOULD have paid volunteers, if they had been salaried, to satisfy Hill Burton. Now, bankruptcy just means paying it back over a longer time, quite possibly for the rest of one’s life. No one seemed to object to this move, probably because the government continued to call “reorganization of debt” bankruptcy. One working couple in touch with this site recently had to quit their jobs in order to go on welfare just to afford the 1600 dollars per month (an amount which Medicaid was able to bargain DOWN) for medicine for their child with cystic fibrosis.
Whether the profit driven, administrator heavy machinations of managed care have extinguished the freedom to be authentic remains to be seen. The law creating our managed care system, sponsored by then Senator Wallace Bennett as the corporate solution to the “high costs of medical care” has instead driven the costs of care through the roof, with double digit rises in costs becoming routine. This greed threatens America’s ability to compete in manufacturing with the rest of the world. Health insurance costs for the self employed commonly exceed the cost of housing, and the cost of dying frequently confiscates entire family estates. Hospitals arrogantly charge the uninsured ten times the amount of those with coverage. With the astronomical “copays” mostly sufficient for real costs, insurance companies do not provide insurance at all. They are paid to broker hospital costs with powerful health chains. Clearly the profit swollen hospital chains should be taxed to fund research, since they now control everything. The unconscionable salaries of “non profit” executives should be made public. Our freedoms are being threatened by the perversion of a public interest. There is no more noble accomplishment of freedom than freedom from suffering. “The proper study of mankind is man.”–Alexander Pope