Going to horror movies is fun. Watching the space aliens threaten the earth in Men in Black is funny. That is how terror should be treated. As something that would NEVER happen, a Disneyland ride, where we scream and shout, finish the ride, and then go on it again. It is bad taste to play in pain, but even more evil to speak of it as unendurable, so socially unacceptable is the interchange. Real pain is a dark secret, and expected to be kept that way. It is perfectly socially acceptable to remind others of this requirement to keep it to themselves, even if their pain is real, especially if it is real. Speaking of pain causes discomfort, the basis for all rudensss. Crying is alright, so cry but do not speak.
Terror is fun, to a point, whether it is the tallest chute at the water slide park or even in watching a war movie of the submarine deep underwater, escaping depth charges. High adventure. These really awful things are not real. Our terror can even be amusing (a curiosity) to others until they bore, so long as it is not REAL. But then, there is the Holocaust–something so terrible that it sickens us.
Too much terror drains the emotions. Terror can become so awful that the gap is bridged, and reality spills over onto the listener. We hear “Please contain your suffering and speak only of what I can derive pleasure from mitigating. Hearing of terror I am impotent to change is heavy to bear. Please do not burden me with that”.
CP is like that. The listener muses, “Pain could never really get out of hand like that, could it?” But what if it did, and what if it happened to someone you loved. Would it be real and merit accomodation, or would it make you uncomfortable, or even disgusted with their physical state, (or is it just in their mind, as some people say?)
What if someone told you that in the end only the pain mattered to them. If the latter, what words would you say to the one claiming to be in pain? Would you distance yourself, chastise them, or tell them what you THINK surely would work. Would you “encourage” them by rehearsing the main points of, say, Victor Frankl’s book?
What did Frankl say? “”Ultimately, man should not ask what the meaning of his life is, but rather must recognize that it is he who is asked. In a word, each man is questioned by life; and he can only answer to life by answering for his own life; to life he can only respond by being responsible.”–Man’s Search for Meaning, p.172
Frankl said suffering is life asking US a question. My answer to life is that Central Pain really, really hurts. What meaning does one expect from nerve injury pain which is merely the genes gone out of control. Does diabetes have a meaning, does schizophrenia, does cancer? It means life can be very tough. That awareness is not a cure for CP. A way to stop the Calcium 2.2 channels would be a cure. Surely Frankl did not advocate mutely leaving everyone in a concentration camp for meaning to arrive. We must get busy with the work at hand, to block the Ca2.2 channels, to help those in deep pain from nerve injury. And we are not asking what the meaning of life is. We are asking where it went? Pain is not like death. One is a perversion of life, the other is the end of it.
We are not shamed into wellness by being handed a book by someone who survived a concentration camp, as if we should be ashamed of ourselves since that experience was so much worse and furthermore, gave Frankl insight. Did Jesus gain insight from his suffering or did he mainly suffer confusion and a great paradox. Can we do better??
One cannot compare suffering as there are no units of suffering. When there are, severe pain may well be the gold standard. Those who trivialize it by saying “You could be hungry”, “You could have been beaten” or whatever do not know who they are talking to. They must be careful.
Advice givers must not forget that bandaids help bandaid pain, but these remedies are an insult to the person with severe overproduction of pain exciters in the brain, a bona fide torture. A starving animal will not chew off its leg for a meal, but a CP animal WILL chew off lits limbs to attempt to escape the pain. Wisely, the brain cannot remember pain well, only the fact of suffering. If it were otherwise, the brain would possibly be damaged, or at least that is one current theory.
In CP, no memory is necessary. It is there replacing us. Can we walk away unscathed, enlightened, and reconciled? Are you brave to pain? For how long? One hour, one day, or one lifetime? There are articulate people with pain, but so far no one has published any books claiming to have derived meaning from the experience. Confusion and paradox are what we offer. This may reveal the shape of life, but it does not reveal “meaning” for us. We love Frankl’s book, but we are not mentioned in it. We think not so much in terms of the broken spirit, but the spirit lost.
Or would you say to the afflicted the only thing you can say sincerely, “I’m sorry”. Those with CP know that you will not be able to resist the presumption of knowledge on your part, which you will them “impart” to us. We will receive no comfort. Comfort is for that which the ordinary person can relate. We can quote Frankl backwards, Job also, but the pain still torments us, as does the horror of realizing what kind of beings we have become. We know preoccupation with pain is sick, and that is part of the terror of it. Your “Freak alert” attitude is part of the problem. It freaks us out further.
And just for the record, Frankl never expected you to comprehend Auschwitz, he would never have presumed that. (Frankly, we identify better with Primo Levi’s forthrightness and humanness. We are empty along with him, not full with Frankl) Frankl was relieved that he had been able to remember God’s goodness. We get that. It does not stop us from trying to find relief.
If we creep into your churches, shell shocked, concussed from the pain, try not to adopt a superior attitude. It is likely true enough that evil resides more readily in a body which is beaten down with sickness, pain and suffering. Mother Theresa knew that you must fill the belly before you may speak of heaven. The needs of the body get in the way. No wonder so many think only the spirit may be good, and no wonder so many of us with CP cannot imagine happiness without a body which is whole. We should not hope for a meeting of the minds by two such disparate groups. The bodies at church speak only of the spirit, while the CP visitor cares for nothing except the body. And the CP sufferers keep mistaking the NIH pain researchers for angels Who knows what WE are mistaken for.
Since those who are ill are in need of a physician, do us no harm as to worship. You would be just like us, if the molecule populations of your neurons were exchanged with us. Your sin/goodness ratio would be assumed to have changed then, and perhaps this view would be partially accurate. If the molecular trade happened, it is also possible that you would stop thinking you had done your part by admonishing sufferers to read Job. We have already read it and found Job’s friends giving him a lot of stupid advice in various ways about his being responsible for his own suffering. Did you by any chance happen to pick up on that part?
Indulge us if we are simply trying to care, rather than caught up in a vision of eternity as you may be. (The view down here makes catching a glimpse of the stars a little difficult, so you must excuse us, our subjects of interest, our manner of dress, our actions). We know perfectly well what the pecking order is, whether in the clinic or in the pew. In the midst of the unworthiness of man, Central Pain has made this plain to us. Our only vanity, that we possess pain experience, is not much of a cover. There is no partcular merit in our current performance beyond survival of aggressive Central Pain. We are just hoping to be somewhere in the heavenly group of God’s children. We already have lifetime membership in the other place, and are hoping for an eventual upgrade.
The problem, you see, is in the invisibliity of the molecule. Billions or them may hide safely in the neurons without the slightest chance of detection by the observer. There is an equal impossibility of ignoring a deluge of CREB, PKC, and Nav1.8 in the dorsal root ganglia. Gene manufactured CREB is not going to stop building up pain exciters in the neurons no matter what my state of mind is. There is a complete clash of perceptions. Is reconciliation possible? One would not go into the old time leper colonies and say to people, “But you look so good!” It would be bad taste indeed. However, how good I am looking is the most common response from others when I mention the pain. Since my appearance is of little consequence, and their veracity is called into question by the very remark, that is not the response I desire most from others. What these well meaning people commenting favorably on my appearance are really saying, without realizing it, is “Hey, guess what! My eyes cannot see molecules.” What I suppose I desire is no challenge, no comment, merely good will.
Why is CP terrifying? In a dream, the monster chasee you but your limbs move only so slowly. In CP, the normal life is before you. You are aware of it, and can remember it, vanishingly; but, the pain wraps and binds you, and keeps it out of reach. Not terror you say? Be thankful severe pain has left you alone, or only left a scar. For those it has found, and has wrapped in its deforming claws, try to be a little understanding. They don’t need Frankl’s book. They need the PhD’s at the NIH to unravel the cascade of pain chemicals, and find a block.
What is the romantic view of pain? It is the same view as the “religious” view. No problem, just see the drama in it, or remember the power of God and it all disappears in a poof. This is a little child’s view of life. Those dinosaurs on the screen are impressive but nothing that Mom cannot handle. Unfortunately, grownups know that the real world has real monsters that even Mom cannot handle. One of them is Central Pain. If anything at all really matters in this world, pain is one of them,
Sometimes pain is big enough to be crowding for a place at the very front of the line. If there will be anything left for us in life when we finally get our turn, it is because we have chosen only that which is essential, something that has been overlooked by greedy pain, who shoved in front and grabbed up what we were hoping to get a piece of. Life looks like an emptied off table to someone in deep pain. So where do you look when something such as pain has stolen your life?
The romantic view of physical pain is also the view we take toward the pain of OTHERS. Our own is quite serious and the most real thing in our lives. This clashes with those who are not having a pain experience. They really cannot share nor understand, and consequently, they sense that they cannot contribute. They cannot donate to any cause, cannot send money to the third world (yours is the the fourth world), cannot do anything for you except leave you alone. No wonder that you are so rejected. Your illness has rejected others for you, and now, you are getting what is coming to you. Except, you are innocent on all counts. This is really weird.
People can be expected to romanticize your pain. They can at least do that since you have not given them an opening to help you get rid of this incurable suffering. Therefore, we are left with the romantic view of pain. If you do not presently know what is meant by the romantic view of pain, you soon will. Pain teaches you lots. Pain is rather easily deflected. Pain comes ohly at the end of life, when death is there waiting as the deliverer.
Yes, death itself is part of the romantic fantasy about pain. But pain doesn’t belong in a romance novel. It belongs in a neurochemistry text. Not much comfort in the chemistry book, at least for now. But your day will come. Your song will be sung. And they will romanticize your suffering, until one day, when pain can be measured, as so much CREB, so much PKC, so many Nav1.8 ion channels, or so much dysrouting in the thalamo-cortical pain circuits, Eventually, these matters will be related to the quantity of suffering, and central pain will be recognized for what it is. It will be possible to compare. Then, they will look back in shock and and say, “I don’t want to think about that” which is pretty close to what they say now. Pain is personal. It cannot really be romanticized, whether by minister, doctor, or friend. And it cannot be romanticized by you. It is real hardship and you will need real values and real perspective to avoid a collapse in its face.
The old maps of the world, when they came to the end of charted waters, drew giant whirlpools, sea monsters, fantastic humans or stated, “Here there be dragons”. The pictures were hideous, rivetting, enthralling and adventuresome. The deadly boring and monotonous months at sea were converted by sea tales into stories of adventure and even treasure, for the sea dog willing to risk all to get it. Even the humble manatee became a mermaid. How else to get all the conscripts on board, where little awaited them but maggotty flour, water that stunk, and hungry rats in the sleeping quarters.
The glories of Rome were lost on the sweating slaves who powered their ships, aching at the oar or cringing under the lash. And the “gentlemen of the sea” usually lived desperate lives, rather than making fun tours of the Caribbean. One day, the swashbuckling, dread pirate pain, will simply be pain, a molecular entity, capable of measurement, demystified, and deromanticized. In the meantime, the myths will be poured out upon you, by those who have never sailed in this ocean. Exaggerations and misrepresentations are easy where man has not gone. Until they take a trip on the good ship Capsaicin*, don’t listen to them. Listen to your own reality.
Yes, we know God is watching. And we know that our our vision of ourselves, uncrecognizable and alien in our pain, is less accurate than His view. We know He will have mercy, and that in eternity, CP will be only a memory. For today, however, we are who we are. The two main questions are:
1) Can you tolerate us as we are, without the endless preachiness, and:
2) Can we tolerate ourselves.
*Subcutaneous Capsaicin injection activates the VR-1 channel, a channel in the neuronal membrane which is active in central pain.