Some marginalization occurs by others against you. Introverting pain makes the marginalization go both ways. They distance from you and you distance from them. Those who must go with little or no clothing because of severe central pain know exactly what this means. This article honors the tolerance advocated in Neil LaBute’s insightful new play, “Fat Pig” (see below). Severe pain is the most marginalizing event in the world. Pain makes a person all body, more so than being obese. The escape from discrimination involves art as much as medicine.
Neil LaBute has become famous for taking everyday events and illuminating the flawed values which govern so many of life’s transactions. Whether it is the cynicism of boys out for a good time with a blind girl, or the ridicule of obesity, Mr. Labute is there to remind us that cruelty is ridiculous. His genuis is in teaching us to see ourselves, and he does not care that the mind is brittle, stretching only so far before it flies to pieces like glass. He stretches anyway, cushioning the blow with a bit of humor. “Every person takes the limits of their own field of vision for the limits of the world.” — Arthur Schopenhauer . Mr LaBute is out to widen our field of vision. The absurdity of human weakness turns out to be a bit funny, but the laugh is on us.
As has often been stated here, the problem facing CP sufferers is the invisibility of the chemical derangement which causes nerve injury pain. Invisibility allows the public to imagine that they would be stronger, more resilient and generally more durable in the face of severe pain than are we. This self assurance also makes the average person feel safer. Pain, no matter how bad, will not overwhelm them, even if it appears to have overwhelmed us. This makes the whole business a little less frightening.
The psychological maneuvering is only available to the uneducated. Research scientists who must give CP to rats and then observe them frantically trying to chew off their limbs have no such reassurance that all they need do is attribute pain to mental weakness or the sound of God moving against the wicked. They know it can happen to them, to the mighty and the humble, to the innocent and to the wicked.
Their place of safety from the ravages of disease is in the barriers against suffering which science can provide. The little rats are putting on a convincing visual display of what it is like to live with CP. The eyes have it. Not a single PhD studying rats with CP has ever accused them of a bad attitude, malingering, secondary gain, or anything but agony. The research PhD’s are our best friends. They have seen the light, and they are doing something about the ugly business of chronic pain. The comment by Wiliam Willis Jr, a great pain scientist, that he sometimes felt it was wrong to saddle little animals with nerve injury pain shows that the drama of the rats had spoken to him. Humans do not go through the ritual of self amputation. We do not chew off our legs. Maiming wouldn’t help us anyway. The pain is coming from the central nervous system, not our extremities. What is left for us to do, shrink, is often not convincing to the uneducated observer.
There are no grotesque events to witness and the suicides are easily written off to weakness or as one among many, all of whom must share a common origin of mental disturbance. Not all brain injury is an emotional disturbance. Emotion is carried in the FRONTAL cortex. Pain is carried in the postcentral gyrus (location of pain), the parietal operculum (nature of pain), and the insular cortex (painfulness of pain). Because we say “Central Pain” we do not mean emotional pain, although that comes along as severe depression in the package deal as well. Brain scans show the frontal cortex is wiped out, depressed, in romantic disappointment and in post traumatic shock. It is therefore unscientific to blame pain on the frontal cortex, which is depressed when we feel depressed, not firing wildly. Firing wildly is the job of the thalamus, which is why thalamic pain is another name for Central Pain. We can be emotional about pain, or not, but it will still be there After time, the only emotion still available may be depression, not the typical reaction to pain, and one more reason for it to be disbelieved unless one understands how the brain reacts.
When Bette Lou Hamilton, one of Kevorkian’s patients arrived at the Michigan hospital, dead on arrival, it was chilling to hear the remark of the hospital physician that he did not believe Ms. Hamilton had been in pain. What would it take to convince him, other than a go at it himself. This doesnt’ sound like a very empathetic position for a doctor to take.
An accepted axiom advises us not to dwell too much on pain. This is supposed to apply to all pain, of whatever magnitude. “All generalizations are false, including this one.”. Even ignoring pain is dealing with it; and, there are many things easier to ignore than continuing severe pain, perhaps ALL things.
Of course, pain can reach such a point that ignoring it is not really possible. “Shaking off” a football injury is not the same as shaking off endless pain.
The accomodations to CP are exhausting, confusing, and lonely. Most paralytics with CP find the pain more disabling than the loss of motor function. That requires some reflection about what pain really does to a person. If pain is overwhelming, it commands attention from the best of mankind.
Much of the western world has heard the story that Jesus sweat blood from pain as his disciples slept on, unawares. Can we who have no evident reaction to pain expect any better from others? (This is not to compare us with the biblical Jesus) Pain is regarded by the majority of believers in any faith to be the one inescapable punishment, the ultimate desert of wickedness, the agony with which a soul may not deal, EXCEPT as it applies to humans here on earth. Here, it is just one more nuisance in the process of life, which lies somewhere on the shelf of matters that risk distracting one from major issues of life. Unfortunately, for the average perwon, nothing is more major than severe pain. It is only the severe pain of others which we trivialize. Our own is major.
Pain is contextual it would seem. Earthly pain is nothing. Eternal pain on the other hand is the worst thing evil could cook up for its followers. CP gets the worst of both. It is the triviality that shows how evil we are, as evidenced by our claim that we cannot deal with it. In addition, earthly pain, like eternal pain, must be God’s will, even if all scripture points to CURING suffering as God’s work. The accusers of pain sufferers are doubly unscriptural. They presume to speak for God, and they misrepresent what God’s work is. It is not going too far to say that mankind displays a good deal of prejudice and judgment in dealing with chronic pain, particularly if it is the bizarre burning of CP.
This crumbling before pain puts CP sufferers at odds with acknowledged principle, that humans must at all times and in all events, be brave, displaying the assurance observers require to feel good about their prospects of avoiding the dark medical conditions that lurk, waiting to strike the unfortunate. That they deal with pain poorly shows that they deserved it, that THEY needed to learn something. AND that the ordinary strong person is safe. Our message must be reassuring before it can be believed.
The eventual collapse before pain is certain to cause a stereotyped response in the conventional observer. We cannot sustain their self protective assurances about their own strength again pain, nor the certain kindness of Nature in insulating man against real, terrible suffering from invisible illness. As mysterious as the lethal bite of miniscule poison from a black widow, the tiny molecules which open the VR=1 channel cannot really be imagined. If I cannot imagine CP, I am not required to believe it exists. Maybe if you could show me the two puncture marks, I would believe.
As a pain state, severe Central Pain has no equal. Coping with it necessarily puts one outside the accepted norm. There is simply no observable bravery in the shrinking performance that is necessary to endure CP. Energy must be preserved to combat the ongoing pain; therefore there will be no displays of performance and no special Olympics for pain. The survivors are the winners and life is the prize. No bravery, no inspiriation, none of the fortitude we have come to expect from quads is present. We appear cowardly and craven when we say, “It hurts too much to be human. If you will leave me alone, and let me get by in my abbreviated clothing, I will try to endure it.” We are not only weak, we are antisocial. What more proof of our weakness is needed. They have heard it with their own ears. They have heard what they think is blasphemy against the human race. Can anyone overcome this ignorance? Enter the humble dramatist, who can verbalize forbidden ideas into awareness.
Because of the power of what is seen, the dramatist places special glasses on the eyes to cure the lazy brain syndrome, or empathetic disuse atrophy. This adaptive blindness, if left untreated, leads to what might be called “mental amblyopia”, which can lead to a complete inability to think, if that part of the brain is not used for a sufficient period of time.
Once a problem is given notice, the public generally has compassion. Aiming the public eye toward helping is initially the job of those who give notice of a problem. Oddly, this may require some drama. Unless there is some sensationalism, the notice required for a change in society’s thinking may never come. This is where the artist has a role. He “sense ationalizes” a phenomenon. Karen Musick’s painting at this site is a good example of the artist’s voice.
The most important voice of a social conscience is that of the illuminator. If we have walked past a problem blindly, or even participated in the discrimination concerning the problem, it takes a rare talent to open our eyes. That talent can couch the message in humor, tragedy, drama, or romance, but almost never does a purely intellectual approach succeed. Strangely then, we look first to the artist for a remedy to public ills. The work of scientists generally follows, not precedes, the ministrations of the journalist, the playwright, and the cinematographer.
The artist helps the public to SEE, by mirroring back into their own reality what the artist presents in the abstract. Painonline attempts to do this kind of work. Left click on Karen Musick’s amazing painting at the home page. Now imagine what kind of suffering was necessary for the artist to so express herself. The Musick painting, perhaps the best picture of CP in the world, and a great work of art, probably does more to inform what Central Pain is like than all the words here on the written page.
The genius of reform is in the initial broadening of the public vision by those who breach societal indifference. In this regard, there are few more important functions in drama than to highlight social attitudes that need changing. Drama is a very effective educator of the public.
Andrew Vachss’ best selling novel, “Pain Management” highlighted the ugly sense of power possessed by some who dispense pain medication to those with Central Pain. (Mr. Vachss has been supportive of painonline because of a relative with MS who has CP, the inspiration for his novel). In this fictional work, CP patients actually form a paramilitary group to obtain pain medications. We didn’t think having CP could be romanticized, but Vachss manages to carry it off. (Don’t give the book to a child, as it is aimed at adult readership. It will, however, make you think.)
Inhuman treatment always comes from a imaginary sense of distance between the discriminator and the discriminatee. Thus, the highlighting of any indifference or societal cruelty toward those who are different, is instructive about all indifference and cruelty. We have been very impressed with a new play written by a famous author, Neil LaBute.
There is something to think about in Neil LaBute’s new off-Broadway play, “Fat Pig”, which like his other work, is about discrimination and narrow mindedness. He says:
“People are not comfortable with difference. You know? Fags, retards, cripples. Fat people. Old folks, even. They scare us or something…
“We’re all just one step away from being what frightens us. What we despise,” he adds.
It doesn’t take much explanation to show this is what lies behind the rush by certain ignorant professionals to write Central Pain off as, at worst, a deception, or at best, as an anomaly in the personality of some people, who should know that their paralysis is the ONLY issue worth discussing, because it is easiest to see. “The eye is the great monopolist of the senses”.
MISERABLE GROVELING PAIN SUFFERER. YOU DO NOTHING FOR THE IMAGE OF MANKIND. THAT IS THE DUTY OF ALL PATIENTS, TO MAKE WELL PEOPLE LOOK GOOD. AND IF NOT THAT, TO AT LEAST MAKE PARALYTICS LOOK GOOD.*
*GOOD, as used here means inspirational, brave, passive, quiet, and generally facilitative and reinforcing of any public stereotypes or prejudice.