“Forget about the pain and just get on with life”–the biggest fiction in the world. Stick with the non-fiction stuff.
This article deals with the maintenance which our illness requires. Since central pain is invisible and the public lacks so much imagination, let alone information, on the topic, this reading will make sense only to those in deep pain. The rest of humanity can worry about escaping the ordinary and finding a “life bigger than themselves”, but for you it is a little different.
The fact is that those of us with Central Pain have escaped the ordinary in a big way. We begin by positing that nothing matches the extremity of severe pain. There will be protests to this, tragic arguments about loss of a loved one, cancer, having to move, losing a girlfriend, not making the team, getting beat up, being fired, divorce, the TV cancellation of Friends or Seinfeld, your favorite team losing at the Superbowl etc. But, when pain comes calling, you are going to hear a voice so loud that you cannot even remember the other things. When the flames reach up and take you, NOTHING will seem all that important, but PAIN will be revealed as the biggest thing you ever encountered, and yourself one of the smallest.
So what are we to think about, those of us who must brave that which is horrible and unescapable. We are found to be living a life MUCH smaller than our own life. Crowded off in the corner of our bodies, with exhaustion at the whole process eating away at resolve, where do we go??? Eugene O’Neill, the playwright, said he hadn’t done a very good job as a man, and that he would have made a better seagull or a fish. We aren’t doing a very good job at being men or women either. We cannot manage very much which leads or even misleads mankind. So much maintenance goes into fighting the pain, that we resent having to further exhaust ourselves to be human. This is not a very good state. Outside the sensory suffering, the mental pressure is tremendous. Where do we go to reinflate our tires, so we are not running around on bare rims all the time.
Well, we certainly do not have any real answers, but we do have what seem to be a few clues, tiny things that might make the difference until scientists learn to block N type calcium channels or even to kill TrkA positive cells in the body.
The absolute first rule is to stay away from other people who do not BELIEVE in central pain. Notice we have not said who do not KNOW about central pain. That is entirely understandable and they will be impersonal and detached about it. When someone does not BELIEVE in central pain, they will not believe in you and will inflict actual punishment upon you. Whether it is a doctor, spouse, family member, or the instant expert out in public, STAY WAY FROM THOSE WHO DO NOT BELIEVE IN CENTRAL PAIN.
Non-believers are emotionally invested in your NOT having central pain and in there not BEING any central pain, anywhere. For them, it is personal that you do not have central pain, nor does anyone else. Unfortunately, it is ever so much MORE personal to you. The accusation will land on you, especially if the person has status or credentials. If you haven’t learned it already, learn it now. NEVER discuss central pain with someone who does not believe in it.
It is not that you are too knowledgeable for them to speak at their level, it is that you are not knowledgeable enough to comprehend the pride that goes with so much assurance concerning that which is false. Never argue out of context and their BELIEVING that central pain is either nonexistent or not so bad is definitely the wrong context.
We have joked about giving scorners a free dose of capsaicin, but the “know it all” pain skeptics are such colossal blockheads, the suggestion of a fair trial would only infuriate them. Someone said it this way, “Don’t cast your pearls before swine”. We add, “Do not cast YOURSELF before swine.”
If their context is primarily disbelief in the existence of central pain, and their belief is in their own intellectual superiority, then you are truly wasting breath and needed energy to talk about it. Not being in critical pain, they are in better shape to argue anyway and will win. You are in position to argue about nothing, so don’t do it. If they mock you, just answer in the nondescript “I’m okay”, which is a non-confrontational way of asking to be left alone. This is your right and if you play it correctly, even the most entrenched, rabid “pain is all in your head” nut case will leave you alone.
The second rule is to “CONSERVE YOUR ENERGY”. You don’t have very much of it. You can hardly resolve to find a way out of the house to visit the doctor. WHATEVER awakens in you a sense of your humanity is what you must cling to. Sometimes life’s choices become the lesser of two evils, wasting out your days over against taking your own life.
Third, “TRY NOT TO LET A SERIES OF BAD DAYS STRING TOGETHER”. Be on the lookout and if you find there have been several really ghastly, hopeless days following each other in sequence, you MUST find refuge in some fallback activity. This may be new thought, music, art, or entertainment. This is not really SANCTUARY because there can be no sanctuary from severe central pain. Central Pain is in fact one hundred eighty degrees opposite from sanctuary. It is the antonym of sanctuary.
If the pain is in your own body, what sanctuary do you think you will find? What you must do instead is to find that bit of yourself off in the corner and take pride in it. You need a little love for yourself, who you are, how far you have come. You must have some bit of distraction, entertainment, or love, requiring the least energy possible. It doesn’t matter if you don’t feel like putting out the effort to make this happen. You must RETREAT. Notice that retreat is an ALTERNATIVE to giving up.
And so the fourth rule is “RETREAT”. You should retreat a little, or a lot, every day. “He who fights and runs away, will live to fight another day”.
Don’t try to solve central pain yourself. Don’t exhaust yourself on a wild goose chase. When the cure happens, medicine will blow its horn loud and long. In the meantime, make your quiet, unassuming visits to the pain clinic and take what they can offer, patiently enduring the time to find whatever mix of medicine which gives you a little relief. This will be exhausting, getting the motivation to make the trip, enduring the wait, finding the money to pay for it, and letting it slide if something doesn’t help.
As you mark time, one painful day after another, spoil yourself with beauty, sot yourself on the good that is in nature. See the trees, water and flowers; or, if you cannot get out, grow a flower on your window ledge. Become its friend. Have a pet. Listen to music. Try art or literature. Certain things exist in the world to give pleasure. Try to take advantage of each of them. There should be a net gain. Addicting drugs are NOT one of these things. They will take you far away from enriching gifts of Nature. We are NOT referring to prescribed drugs, but illicit ones, which don’t really help the pain, and are just something to do, to help you forget. Alcohol is the most common of these nonhelpful drugs. You can afford to loose so little, that you must plan your pleasures so that they do not take what they cannot replace.
All these little defenses are surprisingly high maintenance. This means special care must be taken to get sleep however and whenever it is possible. You are in a great fight. The battle is long, and there must be many, successive, systemmatic retreats, but if you are crafty, if you are cunning, you can avoid the pain monster. It may frighten and terrify you, drain you of every legitimate desire, but you DO have the strength to do this. Remember the words of Frank Herbert in Dune, “Fear is the Mindkiller. I will face my fear. I will let it pass through me.”
Do not listen to others, including this article. Look inside. FEEL what is there, and somewhere there will be a little voice saying “Go here, Go there”. If you listen carefully, the little voice will be able to sustain you when the really loud voice is yelling at you, accusing you, and attempting to weaken and destroy you.
Most of the world wants to live a life bigger than their own, “to live large”. We just strive to endure a life much smaller than our own. Our attempt is the more difficult. When there is an opportunity for a public forum, hold your head up and roar like a lion. You are King of the Jungle because you are still alive. Apologize to no one. You have done no wrong. Make plain to society what must be done. Speak out for those yet to be born, who are in danger of this condition. Generations yet unborn will thoughtfully thank you, even if your own generation despises your story.
One scientist said, given today’s leads, it would take about twenty billion dollars to cure pain within the year, and slightly less to make the paralyzed walk again. That is one fifth what is going to be spent on the Mars shot. When you got a telescope for Christmas as a kid, chances are you looked through it a couple times and then filed it away. On the other hand, when you went to the dentist, the telescopic vista, however fun, would never have taken the place of the carbocaine the dentist gave you before he started drilling. The real priority is plain enough here. Pain first, Mars second.
When man spends his treasure on the vanity of space travel, his paltry six million on pain research at NIH is not going to bring results quickly. This kind of squandering takes it out of the arena where we can question “Why God allows this to happen”. WE ALLOW IT TO HAPPEN. The typical pain subject blames God because Man is short sighted about allocation of resources. You therefore gain the opportunity to speak out for God if you make clear the need for funding basic pain research. When the cure comes, the dawdling masses will say it was God’s will, and they will be correct. It is also correct that it was His will that mankind have enough good judgment to have cured it much sooner, if they had only quit wasting money and failing to seriously try.
If say, an astronaut had to spend out his days in Central Pain, but recognizes that the money could have cured the pain, not a single one of them would say, “Oh well, this pain is not really so bad. If I had it to do over again, I wouldn’t change a thing.” That is nonsense. They would certainly sacrifice the experience of a rocket ride to be free of killing pain. The money would be spent then, of course, so their wishes would be irrelevant, and the time for choosing long past. In a recent survey, forty percent of the children in elementary school want to be astronauts. This is to be on TV, of course. How many of them want to do research to alleviate unneccessary suffering? No, none of this is God’s fault.
When you feel like giving up, it may help to read the following.
“I will remember the child. The child who would otherwise one day acquire central pain and be helpless. I will speak when I can, make public my pain, my nothingness. The scientists will answer the call one day, and my agitation for change will be my gift to the child. He will never in this life receive one any greater.”