One of the things painonline has attempted to do is to provide articles for the lowest of the low, who are sick beyond hope. This is not realistic, but we do it anyway. We realize that the absolute lowest won’t read this. They live in countries where the internet is not accessible, they are too poor to seek proper help, and they are confused, perhaps illiterate and alone. But we hoped a ripple effect would occur, whereby doctors and the public would be reached and central pain would not remain undiscovered. There are other issues. This is one of them.
In its mercy, Nature made most cases of Central Pain moderate, if that word can be used when applied to burning pain. However, in Nature’s oversight, some wind up with a very severe burning, with unending agony. This article is for them.
It is not likely that the United States can claim the most enlightened nor the most effective prison system on earth. Certainly, it is not the worst. Prison is inherently punishment. For most, it is punishment for guilt, whether or not acknowledged. For the few innocent, it must truly be amazingly bad. The scriptures say, “I was in prison and ye visited me” as if those outside an institution of confinement must not forget those inside. Few of us qualify for having truly remembered and visited those in prison.
It is the job of the justice system to decide who is guilty. For the rest of us, our job is not to forget, and even to actually visit. One of the prisons in the state has a program where mature couples visit inmates who desire a visitor. There is always a shortage, never enough couples. The prison itself has some programs for self improvement. Some are effective, many are not. One of those who visit prisons has written an interesting essay. He has gone there repeatedly, including an occasion when he was asked to visit a church service. He remarked that prison was not a good place to repent, that such behavior might well have to wait until time to be served was completed.
Why isn’t prison a good place to repent? You have nothing else to do. Plenty of time on your hands. Repentance is the whole idea of prison. Any indications of it are likely to look good to the parole board reviewers. So what is lacking? The opportunity to do something productive. The situation is not a good one for repentance. Part of life has been cut off, the productive, doing part.
It is not uncommon to hear from those in a severe pain state that they are “in prison” or “in a cage”. For those with severe agony, life itself can become an imprisonment. If true, this is not a good opportunity for repentance. It is, however, an excellent place to develop some appalling habits and attitudes. The sickest know this best.
The Book of Job is one of the favorite weapons used by an indifferent public against those in pain; and no one uses it more frequently than those who view themselves as religious. So common is the admonition to read Job, that it is likely there is not a group of people who have read Job more exhaustively than those with severe central pain.
Contrary to the usual intent of those who tell us to read Job, we are not repentant for saying we suffer. Our pain is still here. We are not shamed by Job’s or anyone else’s suffering. They did not have central pain and even if their suffering may conceivably have actually been greater, we doubt it. It is incomprehensible for us to imagine that anyone else’s suffering is greater than terrible, unending burning pain. There is some scriptural authority for this as well, both from Chrysostom’s semi contemporary accounts (see prior article at this site) and in Augustine’s famous statement, “Physical pain is the greatest evil”. This is NOT a point of doctrine understood and accepted by very many. The evil of physical pain gets hidden behind mingling with worldly people, swearing, bad hygiene, or too much TV.
Mention central pain and chances are the listener will smile condescendingly, nod as if he understands only too well, and remark that what we really need to do is read the Book of Job. The urge to offer such people a free syringe full of capsaicin can be overwhelming. When you are really down, read sad stories such as Job–that should work wonders.
The difficult part would be to actually find anyone with Central Pain who hasn’t ALREADY read Job and anything else they can get their hands on that might promise some relief; or, at least an answer for why the pain has descended upon them. The handing of Job to us is no more charitable than our handing Exodus to them and asking them why they, like Moses, haven’t seen the finger of God yet, nor parted the seas. Those with central pain do not figuratively get up and give our seat to any other sufferer, even if our agony is invisible. Paralysis, death, desertion, abandonment, these are mostly words to someone in terrible burning pain. Any debates over comparative severity can usually be quickly resolved with a bunsen burner or a generous supply of capsaicin.
Comparisons are futile anyway and miss the point. Not that paralysis is not heartbreaking. Most with central pain are paralyzed to one degree or another and are in a unique position to weigh the difference. It is just that paralysis is not pain. The public never gets this. Suffering of all varieties is of one denomination to the non sufferer, Any suffering alarming to the eye is usually given first prize in the chamber of horrors, but to the sufferer of physical pain, the gradation is extremely finely drawn and visibility is not an issue. The horror of paralysis is so great that the public misses the disabling, demoralizing, exhausting nature of continual pain. For the paralytic with severe pain, the comparative difference is obvious. The paralytic may hope for and actually find a limited mobility, may actually forget the paralysis for a time, but the person in severe central pain can never forget, never escape the blanketing burning, can never regain his or her emotional footing.
The affect is more like severe nausea, except that nausea is only in the gut, while a person can have central pain everywhere. Think you have a tiny sensate niche in your body which is insulated from pain? Burning central pain can find it out and remain there. The suffering stretches out forever. The unthinkable, the immoral, and the downright stupid can falsely appear acceptable if any of them provide any distraction from the pain. Such an attitude is evil and mostly unavoidable. Is not such a person damned already? One would say “yes” except for the moving and remarkable acts revealling depth of humanity which still surface, such as the article “Reality CP” by Alan Hess at this site, or the deeply moving painting by Karyn Musick, another neuropathic pain sufferer. Who else can say or express things such as this? Certainly not the “holier than thou” advisers who in their great presumption make flip mention of Job as an easy cure-all, without asking if we have read it already.
The only thing worse is those who say WE could never imagine what THEY have suffered and THEY are still making the best of it. The opportunity for a word of comfort is so often perverted into a rebuke. Since the Holy Ghost is also called “The Comforter” in the sciptures, for those who believe in it, these remarks that we “ought” to read Job, or “ought” to observe how brave THEY have been, probably do not emanate from the Holy Spirit, for they are anything but comforting. People who stand on the other side of the flame simply do not get the picture and do not want to get the picture. We are separate beings and that is very scary.
Where will the energy come from to sustain morality and decency, courtesy and generosity? No one gets upset if someone in short term pain acts in a socially abnormal fashion. It is only to be expected. Proper ladies can swear like sailors when they are in labor. But if you do this for a long period of time, you are not a “proper lady” any more. The resentment and misunderstanding pretty much take you out of the human equation.
Shameful isn’t it, but that is what the person with severe central pain is, SHAMEFUL. The CP sufferer is also inauthentic. If he laughs, he is not laughing. If he visits, he is not visiting. If he comforts, there is resentment behind it, if he speaks he has no vocabulary, if he relates, he feels more distant than before. Try as he might, what he mostly and almost completely feels, is PAIN. He/she is in severe burning pain so intense that he continually confuses it with his identity. There is nothing worse, according to those who study such matters, including Ron Tasker, the famous Canadian neurosurgeon who discovered that pain was carried in the spinothalamic tracts of the cord.
Tasker is perhaps the greatest pain researcher in history. He was also the first to discover the real level of hypersensitization in CP. Radiomagnetic energy applied to the necks of CP patients recreated their central pain while it was absolutely imperceptible to normals. There is some point of knowledge about central pain beyond which one stops wondering if the person is really in severe pain and starts wondering if they are fully human.
Frankly, we don’t think Job is about repentance; hence it is a poor tool to promise us a cure from pain if WE repent. Job has not done anything wrong. He just has terribly bad luck. He has been given up to the forces of nature which can ruin a man and he pretty much draws everything misfortune has to offer. He is not repenting. He is faced with an entirely new set of problems, not the least of which is the realization that he CANNOT understand what is happening to him, CANNOT imagine how it could have occurred in God’s universe, and CANNOT escape the perception by his friends that he has done wrong and that any other interpretation would go against the tenets of religion.
His “comforters” see his suffering as full of meaning. Job himself sees no meaning at all, and it is that lack of meaning which is perhaps his greatest suffering. He is steadfast–that is about it. Nothing more. He does not improve any while he is suffering. The scriptures even call him a “perfect” man, and both God and the devil agree that Job is indeed just such a person.
In the end, God rewards Job with an increase, perhaps as much or more than if there had been no period of suffering. The wait must have seemed like an eternity to Job, and there was never any assurance or even an indication that relief would come. And so, the book of Job is about being steadfast, even when everything is going to the dogs.
We don’t think central pain is about repentance either. The problem is that it is a very great deal like prison. Minor criminals who go to prison are more likely to learn how to be professional criminals from their cohorts there than to come out reformed. This is a sad fact. Recidivism has always been greater than fifty percent. Prisons don’t really work, even if they make society feel better.
Central Pain does not really work to make us better. In fact, there is a very real danger of acquiring some truly vicious attitudes, chief among which is the feeling that one has already died. It is easy to mistake severe central pain with death. The self is missing. What remains has nothing to offer society. It is certainly not pleasurable to spend time with someone in severe pain. They are cranky, detached, short tempered, confused, angry, despondent, suicidal, depressed, and fed up with themselves.
Once the self goes, the replacement version created by burning pain is certain to be a worse rendition of a human being. All that can be said is that the survivors are steadfast. Steadfastness is essential to survival and that is why so many do not survive long periods of severe pain. From cradle to grave, no one holds out survival as a lofty goal. One must contribute or be shameful. The person in severe pain tries at first to remember who and how they were before the pain, and then, they try to forget. They do not want to be compared with real humans. They are so very far away, and have come to see that. They must attempt to stay in the orbit of life, without ever really going there again.
So success in Central Pain is survival, with acquisition of as few bad habits and characteristics as possible. We hear stories of those who have become beatific in Central Pain, but the real story always turns out to be that the Central Pain was not severe. For the major case, life is just one long tale of deterioration. Except for steadfastness. It becomes remarkable, even if it has no underpinnings of meaning. It is survival from the gut, from an instinct, perhaps augmented by religious belief, that God knows best.
Trusting God is what severe CP sufferers do worst, since after all, they are in hell already. However, it is an error to mistake central pain for death. As long as life is present, qualities can be modified. If not repentance, then deflection and minimization of evil. It is possible to increase gratitude for the kindnesses of others. It is possible to gain appreciation for small things which others miss. It is possible to goad science and the legislators to fund pain research. It is possible just to tell a story, such as the moving article by Alan Hess here at this site.
There are possibilities. Life retains that worth. When the sufferer is freed from prison, there will be opportunity to become reacquainted with the self. It will be awkward at first, but chances are, we will have some idea what should be placed in there which we could not place in there during our stint in CP prison.
As the new year begins. the editors at painonline sincerely wish strength to all sufferers. We are doing our best to educate researchers and to inform them of the need for more help, faster. We will never get what we want, a full out commitment by the government to end pain. However, we are all those of the future have. If we give up, they will also. If we persist, they will be spared, because CP will have been solved. It will be the result of steadfastness, not repentance. Do not mistake Central Pain for death, you have work to do yet, “miles to go before you sleep”. Carry on. Your presence is a testimony. Write your story. Maybe someday people will use it to remember a harsh time.