More is contained in obscure dusty books in rarely visited stacks in restricted libraries regarding the guarded and highly secret rites of ancient Egyptian temple ceremonies than is revealed about central pain in the open neurology shelves at modern medical libraries. It must the fascination of the mummy. Maybe we should dream up a bogus curse to catch the publlc’s interest. Maybe we could exploit the inability to tolerate the touch of clothing. “Naked Person Disease”. Sound interesting? It certainly does not sound believable. It would more likely lead to the building of jails than research laboratories. How bad can clothing be? With sufficient hypersensitization, worse than can possibly be imagined. Infinite sunburn, what a freak!
One always thinks of Sam DeMuro, (Sam passed away at the turn of the century) whose inability to obtain a diagnosis of central pain led him to take out full page ads in papers around the country, describing his symptoms and asking if anyone knew what was wrong with him. His search for the Holy Grail of pain relief finally led him to UCSF where needed information was gathered. He also wound up communicating with some of the staff at painonline, but mostly Sam took his diagnosis of hopelessness and chose to give love, despite perpetual desperation of his own.
If you knew Sam, he was like a child in his faith in his fellow man. He was certain a cure would be found–it was only a matter of time and effort. No effective help ever came to Sam, but his own help to others with central pain was effusive, generous, and legendary. Blessed with material wealth, he would have given it up in an instant for relief from CP. Instead, his efforts only led to help for others, such as he could render. Now back in what must surely be home territory, Sam has left his earthly hell.
SPECIAL NOTE TO THOSE INDIFFERENT TO CENTRAL PAIN
It is not going too far to allege that severe central pain, being the worst pain state which mankind can suffer, merits special attention from the public. Really awful torture should awaken the humanitarian instincts which characterize most of the human race. Always getting the raw end of the deal in any suffering are those in far away places, who enjoy no media attention. They suffer and die in neglect, occasionally with some journalist, sensational or otherwise, dragging up the “human interest” story to rub the public’s nose in it. Of course, too little too late doesn’t seem to work very well. Since Central Pain is invisible, it might as well be in some obscure corner of Madagascar as far as the public is concerned. They may fly to Indonesia to render aid to flood victims, but as they do so, they fly directly over the homes of those struggling in the grip of something even more terrible than death, inhuman pain.
There is something about visibility that speaks louder than all the other senses combined. The American GI’s and the Russian troops liberating Auschwitz and other concentration camps were aghast at what they found. The world’s conscience was moved, but it was too late to be of much help to those who entered the famous gates with the phoney sign which read, “Work Will Make You Free” (Arbeit macht frei). The Jews, resisters, and Gypsies, who perished in the flames of efficient furnaces probably wanted freedom by some method other than death. Central Pain patients feel the same way. They wonder not only if anyone human cares, but if God cares, just as did the inmates at Auschwitz.
It is not a matter of taking issue with the proposition that people learn obedience to God through the things which they suffer. It is more about the vanishing of real consciousness in the ongoing, unstoppable, relentless dysesthetic burning and lancinating pains. Moderate suffering can refine you, but getting blasted with nonstop burning may well leave you a burned out hulk.
It is hard to recognize anything religious about the attitudes of those who cry into their fifth, their tenth, their thirtieth year of awful pain. Should our assessment merely be that there was something God wanted to teach them? Ask someone with severe CP “How are you doing?” and they are likely to tell you to go where they think they already are. They also hang up on the word, “you” since it doesn’t really fit–their identity fled them long ago, and they don’t really perceive themselves as having an identity, more like disintegrating machinery. Further, how “well” can a person in terrible scathing pain “do”. The word “well” doesn’t fit either. It implies the impossible.
They have not given up their hope that God will relieve them and will preserve their identity somewhere outside the pain chamber so that someday they may regain it, but as for right now they are in terrible pain that they know you do not want to see and they also know that nature will oblige them. That is “how” they are doing. It will be the same, every moment that you ask, on every occasion. Their mental blasphemy at your asking the naive question must be shared in part by the ignoring public.
Isn’t it really time to get involved in insisting and demanding that the government put an end to the torment and agony?
The little village of Auschwitz has taken a beating for allowing the extermination of hundreds of thousands of Jews at the nearby camp. After the liberation, citizens were forced to tour the camp and witness the death and horror. They claimed not to know. Burning human flesh was unmistakeable for some but for others, the smell was so bland–who would have guessed. Now, however, the Jewish community has honored some few residents of Auschwitz who helped or attempted to help the inmates. Is there anyone like that out there with respect to central pain. Do some few of you actually hear us?
For the rest, they can contemplate their visage in the mirror as they remember that they have done nothing to alleviate this evil. No one would question that witnessing severe human agony without attempting to help is pure evil. Who would want to see that in the mirror?
Does this mean that there will be a mad rush by Americans to insist that the torture of CP subjects be stopped by appropriate research? Somehow, we don’t think so. Actually, we think that many will actually hide behind the iniquitous lie that such suffering is God’s will. It is true that there is an example in scripture, Job, where it appears a man was allowed to be swallowed by misfortune. However, for this one example, there are thousands where God’s work was deliverance. The one for whom Job is said to have been a type, Jesus, the only relationship to illness was to heal it. One exception like Job as against thousands of incidents revealing that it is nearly always God’s will that the ill be attended to and healed, tells us what the default position of the Divine is–that man should be delivered from suffering.
If we wish to emulate the Divine, we will not be so performing by assuming others in bad shape had it coming. There but for the grace of God go we. When tragedy occurs, there is an obligation to endure it well, but there are limits to endurance for mortals and that is what makes Central Pain so brutal, undending pain can cause them to abandon their own values. Mankind generally is not yet serious about looking hard for those that mourn or suffer, except perhaps where the suffering is visible. And so there will still be times and situations where only the small minority can claim not to have noticed and to have done something about it.
Is the central pain Auschwitz harder to see than the Nazi Auschwitz? Not if you trust the PhD’s and those who must tend the little CP rats who chew off their own legs in a futile atempt to stop the burning.
Like all truth, the truth about CP will eventually out. We record the bitter chronicle of the awful disease, not only for the hope of a cure now, but to provide some mental refuge for those of the future.
As Longfellow wrote:
Lives of great men all remind us
We can make our lives sublime
And, departing, leave behind us
Footprintes on the sand of time
Footprints, that perhaps another
Sailing o’er life’s solemn main
A forlorn and ship-wrecked brother
Seeing, shall take heart again
Painonline and the other sites labor to awaken the public, but also to engrave in the literature of illness, the astounding histories of suffering, and the indifference with which the public viewed the invisible agony of central pain. Are not others sick? Do not those with greater publicity deserve the greater attention? Shouldn’t the squeaky door always get the grease? Even the ill must give way to relief for terrible pain. Only gross ignorance could explain the obliviousness, skepticism, or outright antagonism by those who regard the visibility of their own illness as conferring some sort of meritorious superiority or claim as a class on the attentions of medicine.
It takes a good memory of what pain is like to push past the demanding masses of the moderately ill to find those encased by the most severe pain. Always the stepchild, CP patients pick up scraps of information generated from other fields of research, hoping for secondary derivative help as realize there will be no primary recognition.
We may be damned, but we are damned with dignity. The forgotten will not forget. Others come after us. We are forgotten, but we still have a service to provide in not forgetting pain pioneers who must tread this wilderness road after us. We will have forged a crude trail, identified temporary resting places, left signs at watering holes for the soul, and marked ramshackle refuges from the burning. This is, of course, spoken figuratively. The notice for needy souls yet to pass by will happen not by physical landmarks but by our words of testimony.
Lying on the sands, they may find charcoal remnants with which to kindle a fire of hope, the courage to endure, and the realization that others before them have done our part to lay a foundation. There were those who refused to back down when others tried to convert pain into some twisted version of “luck”, and to endure accusations of drug seeking and secondary gain until such time as the brain imagers actually showed the alien within and SAW our pain. Our struggles will be a shrine to the the unknown and the unheralded of pain endurers.
Hopefully, the world will be better for our having lived. Like ancestral man, we faced up to the huge beast of pain with inadequate weapons, and somehow moved humanity forward. The acts of courage in Central Pain are so continual as to be unnoticeable, but they are known to us.
Why does central pain get lost in the shuffle? Life is tough for everyone. The world moves to the song of sighs and groans, it is said, but what song could ever express constant dysesthetic burning? About twenty percent of those with shingles never quite get over it. The burning pain along the path of ONE nerve persists and shapes their lives around the pain. From conversations with herpes sufferers, they find it impossible that there is a group with the same burning pain ALL OVER THE BODY. Even for those most in a position to relate to burning pain, it becomes impossible to imagine a human which has it everywhere. Central Pain is just too much. Too much to believe and certainly too much to have.
It is in America’s interest to wake up! One day they may find it is themsevles, their parents, or even their child in a chronic pain state. In fact, statistics show that ONE IN SIX Americans will eventually acquire a pain state. Most will not have central pain, but if we can knock off the mother of all pain states, then treating the lesser ones (none of which are regarded as “lesser” by those who have them) should be relatively easy. Act now America*, when you still have the ability! If you do not, someday you may find yourself standing speechless, a million miles away from someone who just asked you, “How are you doing?” You will be frightened, you will be terrified, you will be lost, and suddenly you will feel VERY alone.
From Leigh Hunt:
“And is mine one?” said Abou. “Nay, not so,”
replied the angel–Abou spoke more low,
But cheerily stlll, and said, “I pray thee then.
Write me as one that loves his fellow men.”
The angel wrote and vanished. The next night
It came again, with a great wakening light
And showed the names whom love of God had blessed–
And, lo! Ben Adhem’s name led all the rest.”
We think Alan Hess’s “Reality CP Update” (see at http://www.painonline.com/mt-archives/2006/07/reality_cp_1.html_
establishes him as one of the great authors on central pain. Bet you haven’t read any thing like it in your lifetime.
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*Although we mention America, other nations are equally or even more commmitted to curing CP. Canada, the UK, Australia, Italy, Germany, Sweden, New Zealand, China, Israel, and many other nations have scientists who have seen pain as the enemy and are attempting to move against it. The lingering reluctance over stem cell research has made this inevitable, which is not a bad thing, so long as we are merely utilizing that which would be discarded without harvesting life for our own benefit. Multipartisanship is gratifying, unifying, and ennobling.
