Conventional wisdom on pain isn’t always correct.
We don’t need to recite ALL the bits of conventional wisdom on pain and pain coping here because you have already heard most of them in one form or the other. However, we will list just a few to remind you what we are talking about:
1) It is God’s will (If so, why is Divine power about healing, in the scriptures? When Jonah wanted to see Ninevah suffer, he was rebuked by God. Does anyone seriously believe that God does not want scientists to find a cure for pain! Turkeys don’t come already plucked and diseases require work to solve. The gift is in giving the ability.)
2) There was something you needed to learn (Really? I already knew pain hurts. Now I know it also hurts if it never stops. Who would have guessed. Pain teaches me patience, but overlooking your insensitive, unhelpful, inane comments does it better.)
3) I used to have the same thing, but I ignored it until it stopped. (NO. You didn’t have anything close to central pain, and I am hoping if I ignore you, YOU will stop.)
4) You are lucky. You could be paralyzed. (You are lucky. You could be intelligent enough to be accountable for your stupid remarks.)
5) You are lucky. You get to dress in shorts. (Yes, no doubt. Maybe you should try it at your daughter’s wedding reception or at church. Would you care to pay for my laser hair removal, so the shorts look a little better?)
Okay, that’s enough pejorative pain comments for now. The point is that conventional wisom is pretty ignorant. That is what makes it so difficult to live with central pain. The same people who wheel you up the ramp because you are in a wheelchair will make snide comments about your lack of appropriate clothing, spoiling their generous attitude.
We all feel pretty well prepared for some things, even to the point of advising others, even if we have absolutely no idea what we are talking about. For example, the charging gorilla. I am not really too worried about it. That is because if it happens, I know exactly what to do. DO NOT RUN. That is self evident. If you run, the gorilla will think you are afraid, and will knock you into manburger. I have seen lots of videos on silverbacks charging the camera, and all the photographer has to do is to bow the head, and the gorilla becomes pacified and everything is okay. So that is why I am not losing sleep over a gorilla charge. I thought I had that one fact pretty well down.
However, the top gorilla expert in the world, Diane Fossey, whose story is told by Farley Mowat in the best selling book, “Woman in the Mist”, which was the basis for the movie, “Gorillas in the Mist” shows me that my confidence is premature. What Diane says is that she had heard the same thing, about never running, but found out it was a myth. When two big gorillas charged her with canines bared and howling angrily, she thought she would do the “DON”T RUN” thing, until they were right on top of her and not about to stop. She dove into the foilage and their momentum carried them past her. This saved her life. Just when I thought it was safe to go back in the jungle, Diane had to ruin all my fun. Fine, if that is the way the gorillas want it, they can have the remaining two square inches of ecology left to survive in. Also, I am wondering if the advice givers who say not to run were just lucky and that those who didn’t run and were turned into hanging chads didn’t live to give a contrasting viewpoint.
And so, feel under no obligation to follow conventional pain advice. The advisers have absolutely no idea what they are talking about, have never experienced anything remotely like central pain, and would howl like babies if they ever came across it. If you do not believe this, watch graduate students who inject a tiny bit of capsiacin to create a SMALL amount of neuropathic pain in ONE SMALL AREA of the arm. Be they brave, or be they chicken, they all think they have been shot for about thirty minutes. Then, they quit giving advice.
Do we sound unsympathetic? Not at all. We of all people know exactly the pain they are feeling. The more you know, the less you say about severe pain. You have not done so well with it yourself. You find out that it is a lot stronger than you counted on, and that you are a lot more pathetic in the bravery department than you believed possible. Keep that in mind the next time someone is bearing down on you to follow their advice. Don’t hang tough. Dive into the foilage. Run from what central pain has to offer. It is VERY powerful.
When the pain tsunami hits, you had better run. Severe Central Pain is an irresistable force, no matter how much posturing pain theorists may do on the subject, usually in a manner that reflects well on them and poorly on you. You must run. If you attempt to continue living your life as you always have, it will take you away. If you do not allocate most of your resources to escaping it, it will overwhelm you. You must realistically consider what someone in central pain can actually do and reduce your expectations to that level. There will be many revisions downward as you come to realize that all the helpful advice in the world will not diminish pain one iota. You will likely feel greatly reduced as an individual, but this is only in terms of what is expected of the general population.
Your level of achievement is centered around survival and sparing those around you of trying to relate to what they cannot imagine. That is a terrible challenge and plenty for you to accomplish. Try not to worry too much about survival. There are those who will help a person survive, since the necessity for food and shelter is something that others can understand. The pain is for you to get around, by reducing expectations, curtailing what you attempt to do. If you find something that will get you through the next hour, you have found something worthwhile. One step at a time. Easy does it.
This is not the advice given for paralysis, where effort and achievement are more or less the highlights of a healty attiude. If Christopher Reeve, who did not have Central Pain, would credit it enough to support research in CP, then you don’t have to worry about skeptics in the nonparalyzed population.
In Central Pain, which most feel is worse than paralysis, you should not only retreat from what you formerly considered an acceptable level of performance, you must run from it, or your personality and self esteem will be destroyed. Deep depression typically follows anyone who fails to realize that things have changed, massively and overwhelmingly. With severe pain, which is exhausting, overexertion does not lift you, it depletes you. CP is the most severe pain state known to man. You do better to evaluate matters in that light.
Nothing else is pain. Augustine called physical pain “the greatest evil.” The bravest people on the planet toward pain are those who already have Central Pain, who are still alive to tell about it. Don’t listen to someone who knows less about something than you do. It does not matter how the public sees pain. Most of them have only a passing acquaintance with it. You must deal with it as it is. You must avoid it to whatever degree you can. “He that fights and runs away, lives to fight another day”. Choose life, even if it lies along a radical change in direction.
Here is the official line on Central Pain by the U.S. Gov’t Research Agencies as given by NINDS:
“Patients should be sedated and the nervous system should be kept quiet and as free from stress as possible.”
That is the position of the experts. Believe it!