This is too hot to handle, but too common a lament to ignore. Those who ought to support you have the potential to deliver the most crushing blows. Et tu Brute?* Keep your theology away from our pain. Keep your social commentary off our dysesthesia. It is an injury, for heaven’s sake, not a statement about our worthiness. If you cannot help the suffering, leave them alone.
We doubt any of you bring up central pain voluntarily. Been there, done that, and it doesn’t work. Chances are the topic only arises when you are challenged in some way about it, about the meds you need, about your hope for relief, your need for information about relief, the way you dress, or the way you cannot socialize or do other things.
The sad fact is that when you talk to someone else about central pain, you will be talking in THEIR frame of reference and not your own. This dooms the conversation before it starts and most of you have already recognized this. You are sick of explaining it, particularly to your doctor, when it seems like he ought to know about it without your telling him. Then, comes that pivotal moment when you need spiritual guidance, maybe God could help you.
However, your minister is simply not up to it. Instead of some inspired message, you get trite, stereotypic, one size fits all advice, usually putting it on the level of marital strife or poverty, which seems like up to you. Unless you are very, very lucky, your minister will insert into the “helpful advice” some commentary that you need more faith. Really? If you didn’t have a lot of faith, you wouldn’t be here.
The, “You need more faith” statement could be put into a fortune cookie and handed to every human being on the planet, including the minister. Who doesn’t need more faith? Reminding you how you could be better, or how others ARE better, is not of any benefit. With the advent of ether, local anesthetics, and the epidural, the ministers of today are downright crummy pain counselors.
They should begin by trying to understand how you FEEL, to consider what YOUR frame of reference might be. You are not there because you have no idea what ordinary pain feels like nor how to deal with that–piece of cake–let’s play “see who can keep their hand in a flame the longest” because the CP person will ALWAYS win–the power of experience. You are not weak to pain, you are weak to CENTRAL pain. If you have CP muscle pains, chances are you endured more pain getting to his office than he will experience in the next month. The little organ to fight pain with, your brain, is itself the instrument of your torture. You are there because something MUCH, MUCH bigger than pain is crushing your desire to live, and smothering your memory of yourself.
What really happens is that a model of how a human OUGHT to feel always comes up. Since you are not human, what is that to you? You know how a human ought to feel, but that is not available to you, so you are trying to figure out how to deal when you cannot feel human. Nothing applies to you and you apply to nothing. Central pain is the big thing in your body and you are crowded off somewhere into the corner.
Your minister mistakenly thinks you retain possession of your self, which you do not. You control that little human fraction which is still left and you want to know what you can do with that. The only way in which you are really whole is that you have said “no” to that larger portion which says life has nothing for you. God can reach into a dungeon that deep and a room so small, but your minister cannot. He has not been taken to hell and shown around. He still imagines a world outside pain, which is much broader, with considerably more choices.
You can quote the famous neurologist, Dr. G. Riddoch’s description of Central Pain as a “pain beyond pain”, but it will not register, no matter how many times you say it. To the uninitiated, nothing is beyond pain. The minister realizes it would be stupid to tell someone with SCI to stop complaining and simply walk, but he does not realize that it is much more futile to tell someone in severe pain to “just ignore the pain”.
He realizes he cannot simply command an SCI severed person to “take up their bed”, but what he does not realize is that the injury which causes central pain is just as anatomical and just as profound. It is not a mood disorder. He thinks he can heal you with words, chiding you; basically, calling you to repentance. That is something you would like to feel motivated to do, but it has nothing to do with Central Pain. If he knew how close to the brink you may walk, he would realize God is holding onto you, and so should he. The best you will get is “If I cannot talk you out of this, I will just have to put up with you”. Not very comforting. Shrug this off. He would melt like everyone else if severe central pain came calling.
What you are after is how to feel alive, and like God’s child, when you cannot feel much else. You weep inside because you cannot even make others happy, it just requires paying too much attention and pain holds yours. You cannot actually remember happy, so you are after something more elemental, but it eludes you. You were hoping he could help and instead, he just put you down, as if you just don’t get it. To speak of heaven, he must know a little something about hell (Isn’t gaining experience why we are on the Earth?), and no one has traveled deeper into that chamber than the person with severe central pain. The minister could cross over the veil almost as easily as to understand the place you occupy.
If you already know you are failing, and come to talk about it, being told you are failing is hardly a salve to the soul. The difference is that you know what is possible with severe Central Pain, and he does not.
In severe pain, you have the shortest of short term goals, making it through the next few hours. This is not especially compatible with being drawn out into a vista of eternity. The pain is just too great. If you can make it through this day, and then keep making the days until Nature mercifully takes you, or until the NIH sets you free, then you will hope for understanding and mercy when you face your Maker. Where much is given, much is expected. We hope the opposite of this is true, because we are isolated, here, in terrible pain, and the pain force field keeps us from reaching out and blessing others.
In severe central pain, just still being around is the definition of success. Your minister has something higher in mind. He isn’t going to buy survival for performing as expected. Neither is anybody else. However, if you were to dissipate your efforts in much more than survival, you would fail at the first step, staying alive. You will probably need to talk to God personally for spiritual help. His representatives here on earth, will talk before they stop to pray themselves. Just as you seem a reproach to your Doctor, you are handing them what they perceive as a defeat. Perhaps you are even accusing God? Who can blame them if they take it personally, given the occasional mistaking of self with God when one is “called” to the ministry.
This leaves you feeling incredibly defeated. There is no blow like that which comes from your ecclesiastical leader. HE will have a context, and it will not be to try to insert himself into YOUR context. It will be to try to fit you into HIS context.
Annoying, but not so devastating, is a dose of the same from complete strangers, who ought to have the courtesy to know better, but manage to imply in some way that you are socially or morally defective for trying to put one over on them. If Central Pain REALLY existed, they would have heard about it. Here is the circularity, “We don’t want to hear that nonsense” AND “If it really existed, we would already know about it.” Well, one reason they haven’t is that CP subjects are very sick. Talking about it does not pay. They are too sick to run the gauntlet of public questioning and contempt. They despise us for the truth and downgrade us for that over which we have no control. We may forgive the stranger, but somehow we want to have a little different talk with the minister.
We resent being required to resolve the questions of the ages in order to merely discuss our pain. However, this is a topic that simply will NOT be put to rest. The MOST common complaint received here from Central Pain sufferers, beside the pain, is the systemmatic judging and theological punishment by the “religious”, who persist in referring to Central Pain as “God’s will”. Which God are they talking about? This defeating lecturing is not founded on solid doctrine. We will attempt to take the “theologians” on. If even partially successful, then we can get back to seeking help from the scientists.
Do not read this article if your religious sensibility is overdeveloped. It will just annoy you. If you want a little reassurance that your central pain is medical and not theological, then go ahead and read.
Nothing in this article is intended to be read as literally true religiously. It is instead philosophical and speaks against no church, but rather the unfortunate tendency of humans to graft their ideas onto “theology” AND their “theology” onto pain. In short, we would like to put an end to lame advice from religious figures and can think of no other way than to point out when they have crossed the line from revealed truth to opinion pieces.
One of our staff members, who has TWO doctorate degrees from major institutions remarked recently that as soon as his central pain is mentioned, the listener immediately adopts a superior stance, psychologically, temporally, spiritually, and intellectually. In other words, there is appalling judging. Confess your poverty as to the things of sensation, and there is instant, knee-jerk judging of you as inferior in some way, which suggests that since you claim to have Central Pain, you must be loco, wicked, misguided, or ignorant. You have lived all this time and still know nothing about pain, it would appear. Imagine that.
You will, it may appear to your ecclesiastical leader, need to have the stereotypic myths rehearsed to you, for your own good. Says the pious, shallow cleric: “I, Rev. Joe Average, due ordained, will just have to enlighten this person regarding pain.” This sub-homeotpathic and theologically incorrect advice is just wrong (God is about CURING pain–His influence, and behavior modelled after his admonitions can be felt in the lab of any pain researcher). Advice of any kind will not help central pain, you were there for your soul, but were looped back into something you knew was not solvable.
Most of you have experienced it–the futility of trying to talk about Central Pain, which you have and which just happens to be the most severe pain state known to man. It is also one of the most devaluing and devalued states known to man. And for what it is worth, nobody wants to hear about it. They may however condescend to give you pain advice, which they expect you to hear and acknowledge, but please, make an end of speaking about your suffering, and simply listen to their fount of knowledge on the subject. It is all pseudo-religious stuff–without the give and take of a philosophical discussion. They know what they can see with their eyes, can there be anything else?
Forget about the mystic theologians who assure you that you are supposed to deny your own pain or at least acknowledge your own culpability for the fact you suffer. It is too late in the day to listen to such Dark Ages stuff. It is nothing more than self righteousness and puffery of the least enlightened kind to begin to lecture anyone claiming severe pain about one’s own knowledge concerning suffering, as if the speaker by virtue of whatever pain experience ordinary life brings, is speaking on a topic with superior judgment and wisdom. If I tell you I have pain, why do you immediately think I have asked for your amateur two bits of advice, when what is needed is for you to LEARN and reflect.
The pontificating observer who typically points out some way in which YOU are “lucky” regarding your central pain is actually himself lucky to be in a position to lecture you in a detached way. This thought NEVER seems to cross their minds. None of us has ever been met by the remark from a listener who says “I am lucky”. Rather, the listener reminds us how lucky WE are, repeatedly. What they base this on is never convincing.
Instead of sharing with us an encouraging word, they assume us to have some deep flaw which can only be corrected by partaking of their wisdom which is not worth a straw in relieving our pain. We have all heard it too many times. You are “lucky you are not totally paralyzed.” Yes, as I sit here too weak to draw a full breath, my luck is immeasurable, the more so because my skin burns like acid is underneath it.
The more correct view is that the lecturer is lucky not to have sustained a cord injury or other damage leading to nerve injury pain. This should be obvious. No particular wisdom was possessed by which the lecturer escaped the torments. Nevertheless, mention severe pain and your listener is most likely to assume the role of someone with a degree in medicine, experience in pain, and extraordinary ability to speak in behalf of God. You personify the worst of what can happen sensorily to man, and they typify the shocking arrogance and indifference which unfortunately characterizes humans much of the time.
We, those of us right here, are the “center of the universe”. How could it be any other way. The reach of MY knowledge IS the reach of all knowledge. The presumption and provincialism of the human race is truly astounding. Despite all evidence to the contrary, putting the earth in its proper place involved executions, excommunications and all the power religious minds could inflict before humans finally admitted that the earth revolves around the sun, not the other way around. If the church could be wrong about this, then they could most certainly be wrong about other things, particularly when they wander into a venue outside their area of competence.
This is like marrying someone from a small town. Visit that community and you will find yourself under close scrutiny, because local pride will always put YOU in question, compared to the quality of residents of that particular backwater. There is no town so small that they do not award themselves first prize in human quality, and no human so enlightened that they do not somehow suspect in their heart of hearts that they deserve any good fortune and another not so favored deserves whatever bad has befallen them. This is the essence of false religion, but it has crept into the theology of virtually all churches and is difficult to uproot. The righteous prosper and this central pain doesn’t sound very prosperous to me.
Pride is the universal sin, and you will come face to face with it should you be so foolish as to mention central pain to another. They will demonstrate not charity and compassion, but pride, which is annoying to say the least. THAT is why Central Pain remains unknown, because the public is too self elevating to hear of it.
Although we have already devoted more than enough space to this topic, the persistent cries for help from those who come to painonline suggest we could use yet another piece on theology and pain. It is a boring topic since central pain has no more to do with theology than cancer, gout, or hyperparathyroidism, but the public seems to think so. The theologizing of pain is an impediment to research and creates a burden when circulating in society.
NOTHING is more impolite or irreligious apparently than to mention severe pain. Nothing brings quicker correction and religious remonstration, whether the listener be atheist or believer. Why this is so has never been satisfactorily explained to us. Why someone on first hearing of a condition, for the first time, would assume they are qualified to pass judgment on the validity of the pain state, the quality of our character, or the degree of our honesty, is indeed a mystery. There are no atheists in foxholes, and also no atheists listening to someone with central pain. The stereotyped theology of pain comes pouring out like a stuck record in a way reminiscent “Groundhog Day”, over and over again the same hackneyed, thoughtless expressions about “God’s will” and our “luck”.
We are going to get a bit vicious in reply. We are going to use against you the very weapons you use against us. We will start with the book of Job. You are so fond of insisting we read it, again, and again, and again. Each time we do, we find a person almost without blemish, who nevertheless encounters misfortune, only to have his friends indicate that since God is fair, Job MUST have done something wrong and must be mistaken. This is an interchange concerning which anyone with severe central pain can identify. Surely we must be mistaken or exaggerating when we describe our central pain and even more mistaken when we indicate that we are unable to bear it. Why, the world is literally crammed with pain avoidance strategies, which we, uniquely must have missed, and they in their great judgment have discerned. Why can’t central pain just be a disease or injury. Why does it have to be theological?
But so be it. Let us consider how well man actually understands what they are talking about. This may be misconstrued as an attack on religion. It is instead an attack on things which masquerade as religion, but are instead vanities of the mind. First, there is no reason to assume that THIS little planet is the sole location of life. It is even more vain to suppose that we possess already all knowledge concerning pain which God may afford. Is this the one area where God wants man to stop acquiring knowledge?
But the world is so advanced! Why do you challenge it? Captain James Cook, who opened the Pacific to the knowledge of Europe, traveled by leaky wooden boat 200,000 miles, which is just about the distance to the moon; yet, we assume that modern moon travel makes us great explorers and masters of the universe. Ahem. The universe is just so much bigger than this, that it is questionable when we should begin to talk about reaching “outer space”. Of course life abounds in the universe. God, it seems, enjoys variety. He would certainly become discouraged if he had nothing better to show for Himself than this little waystation Earth, full of mistakes, bloodshed, greed, and pride.
Further, let us consider just how well man understands or comprehends God. HE has said “My ways are not your ways, neither are my words your words”. It seems wise to take Him at His word on this. Consequently, one must always be cautious in identifying one’s own ideas with God’s. We think a reevaluation of the public’s view on pain would be a good place to implement this humility.
One thing emerges from what we know about God. Loneliness is not a good state. If you are raised to the highest heaven, but are utterly alone, what would be the point? Why would God bother with creating us unless HE did not want to be alone in the universe. This brings us to an even more troubling question, “Are we really individuals with actual life in us or are we created robots?” Would robots really satisfy God’s loneliness? Are we the “Stepford Wives” of the universe, here to help God imagine HE is not alone, or are we really his actual “children”, in which case there is some native intelligence in us which makes us actual beings with a life force in us, which somehow resembles the life force in God. We think His love means HE favors relief of pain, both here and hereafter, and favors doing what this takes.
This is arguably heresy we know, but heresy which cannot be avoided if we wish to consider the universe to be filled with actual life and “real” boys and girls, real men and women. Why do we humans stray so easily? Most likely it has something to do with pride, the same thing which keeps listeners from wanting to actually hear about Central Pain. They adhere to their ideas about pain as if it were religion. Their ideas about pain seems troublingly similar to the crackpot letters to the editor in every newspaper.
Central Pain is NOT, however, a theological issue. It is a medical issue. Ministers should not be trying to be amateur doctors. Their advice about pain disease should be the same as for other diseases. We will thank you for not trying to make theology a tool by which to fix science. If you don’t like us addressing theology in a pain site, then we thank you to quit converting our pain conversation into theological discussions. It forces us to confront misplaced religious dogma to get you to listen. A pain state is NOT God’s will. It IS God’s will that we press for science to relieve us of our pain, as quickly as possible, even if society has to do with a little less somewhere else. Pain is not about God. Healing is about God. Darkness is not about God. Sunshine and light are about God.
Next, we come to the Devil. Our having Central Pain is not possession by the devil nor the result of some inclination toward following him. The reason we know this is that we ourselves ARE the devil. The central pain inside us leaves no doubt that THIS body is evil. Take that and leave us alone!
What of the real Devil? During the Middle Ages, the Devil absolutely was the center of attention. Never has his popularity been greater. Satanic defamation was the surest way to discredit someone. Tales of the Witches Sabbath, ghouls, ghosts, and other superstitions were taken as fact. An accusation someone was the devil could never be instantly discounted without taking a good look, since Satan was everywhere.
Hinting that someone was a devil, or had a devil, was the sure kiss of death to his reputation. The accusation was used frequently and never more often than by the churches, who found in the idea of the devil a convenient way to merge heavenly power with earthly power so as to create GREAT power over the minds and pocketbooks of mankind. The Devil will get you if you don’t listen to us. Talismans, trinkets, artifacts, and sacred momentos of all kind were essential to avoiding the Devil’s taking you, AND it kept the manufacturers well housed and fed.
If one goes into the ancient documents being uncovered, the whole doctrine of the Devil becomes slightly disconcerting. In the very ancient parchments, the Devil was Lucifer, or “light-bearer” who had to be cast down from heaven. According to the old writings, he was an angel, who rebelled against God and sought to thwart man’s free agency, and desired the glory of domination over everyone. So persuasive was he that a third of the hosts of heaven were cast out with him. One old script says a council was held where Lucifer was tried, deprived of his high status, and cast down to earth where he became Satan. Here, he is more pious than God. It is a powerful cover for bad social policy.
The churches do not find it fashionable now to speak of witches and everyday possessions by evil spirits. Possessions now are downright exceptional, and we have stopped burning people at the stake. This is a good sign that mental illness is no longer discussed in theological terms. The worst that can happen now is that someone with severe CP will get thrown out of a pain clinic.
“Luck” was also a big deal in the Classical and Dark Ages times. Augustine, who was basically a Carthaginian, or late variety Phoenician, as were most of the famous Greek philosophers, could see that lots of bad people prospered famously, whereas many thoroughly good people had rotten luck. Augustine concluded this showed that our destiny was determined before birth. If our name was written in the Book of Life, no matter what we did, it would work out well for us. This is how men of the time reconciled bad luck. It is not far from how our friends and neighbors view central pain. It was “in the cards” for us, but not for them. This is nothing but false theology. It was for many years an attractive idea, which Calvin reinstated, and which was only abandoned after the forceful attacks on the idea by Thomas Jefferson, who called believers in a capricious God atheists.** They returned the favor and called Jefferson an atheist.
In the end, Americans agreed that church and state should keep to their own functions. In other words they took theology out of government, making humans freer than they had ever been. Freed from the strictures of theology, government had never done better. The voice of the people came up a notch and once the bugs were worked out, sort of, democracy proved to gain favor wherever it was introduced.
Ultimately this denunciation of prelate run government was considered a sacred principle, of all things. This foreshadows the reasons why we should not discuss central pain in theological terms. The two should not be mixed. It has the effect of stopping the resesarchers from researching.
Just as the modern church, limiting itself largely to the spiritual and leaving science to the scientists is a more effective force for social good, modern science can do better if it is freed from theology. Pain research is no exception.
For many years, the idea had been accepted that the church and the government should be one. This came from a document called the Donation of Constantine, where the emperor Constantine supposedly gave all governmental power to the church. When Valla eventually showed in the 1400′s that the Donation of Constantine was a forgery, it led to the Reformation.*** The separation of church and state has been a popular idea ever since. The churches have now largely withdrawn from the political arena, except on clearly moral issues. We would like to see theology also withdraw from medicine and let us pursue a cure for our pain, unencumbered by the falsity that pain disease is God’s will. In reality, pain CURE is God’s will.
And to you advice givers who know nothing about central pain, but assume you know more than those who have it, and are qualified to conduct an inquisition, we are NOT lucky at all, and our pain, which is real, is NOT God’s will. Keep your theology for church and your science for the laboratory. Things work out better that way and you are not so inclined to censure, doubt, or lecture us about pain. This article is easy to test. Just inject a large amount of capsaicin to open your TRPV-1 channels, the ion channels which are hyperactive in Central Pain. You will find that it is God’s will that you burn like fire for having injected the capsaicin.
* “You too Brutus?”, spoken by Julius Caesar when his supposed friend, Brutus, betrays him.
**Padover, Saul K. Thomas Jefferson and Democracy. Mentor Books
***Luther, by Oberman