Dysesthesia Equals Dysfunctional: The Wounded Relationship

Central Pain subjects can only have central pain relationships, but what does this mean?


Really severe central pain is not survivable. It is unable to be endured as to the physical pain, but also not confrontable as to the confusion, self doubt, and absolute disorientation as to what is going on in the nervous system. When pain is really severe, NOTHING ELSE EXISTS. How then, do so many live on? What pulls them through the flames? The answer is, TIME.

Every person with severe central pain has endured moments so shocking, so emotionally depleting, so exhausting, so traumatic psychologically, that they cannot come through on the other side the same person. They must start over and with what? Nothing. No resources. They must reinvent themselves as a lower form of life with no real expectations; but rather the knowledge that they are in terrible danger. The peril of self destruction is not a remote possibility, something off in the distance. It is something which stares them in the face very directly. It demands a mindset, but the attitude of survival has nothing to do with bravery, it has to do with disappearing, floating in the pain until the self does not exist. There, in that death, they cannot be killed any further. And so, they will live.

These people, the ones whom central pain really engulfs, are not normal people. They do not think normal thoughts and do not hope normal hopes. They feel extremely vulnerable to the pain and know that more episodes will come in which they do not want to live and cannot imagine surviving. What then, do they hang onto? What drags them through the awful agony, where pain mocks any idea they have of themselves as human? The answer is time. Being out of the habit of killing themselves, the thought is by definition unthinkable. The first really agonizing experience, is often brought on by something as trivial as occlusive touch, with change in temperature, a cold breeze, or desperation for sleep. This sounds mild to say the least, but to someone whose pain system is sensitized to the point of infinity, these experiences are torture in every sense.

Whether the world can imagine it is not important. After all, what does the world know of genetic pain chemicals, ion channels, and the thalamus? It is very likely that someone in society has never heard of central pain. It is not a very nice accusation to lay against Mother Nature, so why bring it to the public’s attention? What is important is that they find themselves wanting. As the episodes repeat themselves, the person is beaten, destroyed, finished, and devastated. The person they once were has vanished so quickly, leaving little or no trace, and the urge develops to search for themselves and to mourn when the person they knew cannot be located. They have fallen through the world into hell and there is nothing they can do about it, except to trust that even here, God rules, and can somehow preserve them no matter how insignificant the pain has made them and how alien the surroundings.

What the CP sufferer does learn is that no matter how awful the experience and how much fear it leaves, that things got better. Their own behavior had nothing to do with this. How does something which calls out the maximal effort to survive prove so clearly that effort did not contribute to survival. Detachment from self and the present is all that seems relevant from the experience. The self has gone and as the source of so much agony, that the self, which was irrelevant in the fire, seems nearly irrelevant after the experience. It was impotent, not up to the challenge, and one must become a floater. Struggle only made it worse.

After the time of the first big flames, after the time when they were ready to run anywhere at all, no matter how desperate, if any haven of relief could be located, and especially if one could not, they somehow survived out of being unable to think the unthinkable. This experience did teach them that time, which was something other than any attribute possessed by the self, would make the pain endurable. They might be permanently scarred emotionally, and shaking in fear against another episode which was likely to repeat soon enough, but they did remember that it got better. Time helped. If you can wait, you can live. The arrival of the morning, the change in temperature to a more favorable level, the ability to shed clothing, distraction from the day’s activity, SOMETHING arrived to pull them through. This other something was not the self. It was not necessary that the self be so strong, because something else was there which would inevitably move them forward, out of the intense burning and onto a more moderate plateau. This reality check let them know that they did NOT possess the internal resources to survive repeated onslaughts of high level pain, but that TIME would survive it.

What they had to learn to do was hang onto time and it would tow them out of the 200 foot wave and to shallower places. TIME was there, and it did amazing things on its own, what a person could not themselves summon, but could only wait for. No matter how bad it gets, they had time as a reliable buddy that would drag them to higher ground, and there, they would survive, wounded and shell shocked, but still alive. These episodes are unforgettable. They stay in the consciousness like great and awful events. They are distinct and they teach one that one cannot stand against really unbearable pain, they can only keep breathing, try not to think the thoughts, try not to feel the helplessness and weakness. There is power in the morning sun, and somehow, suddering with fear and shock, the person moves into a rhythm of living which is not like the death grip in which pain held them.

Words fail to describe severe central pain, evoked by some chain of events. It is brutal in the extreme and language cannot reach it. However, one comes to have faith in time. Time will make it better. How does this person achieve a relationship with another human being who has no idea whatsoever who has transpired, whose mind is still conformed to the notion of how things are in the universe, with bounds to what man is required to endure. The difference now is almost one of dimension. The pain subject has entered some different part of the physical universe, but there is a human side remaining, sometimes seeming oddly out of place, which recognizes that association with others is essential. Obviously, the problems here are very great.

In order to understand why someone who is enduring great pain has impairment in relationships, it is helpful to read “The Accident” by Elie Weisel. The protagonist of that fictional story, after surviving the Holocaust, cannot get past his suffering and loss to establish anything more than a tenuous relationship with a young woman he has met. Nothing in the book will be surprising to someone with severe Central Pain. Nothing.

Unfortunately, with really severe pain, all relationships, no matter how important, no matter how precious and vital, can become more of a performance than a real relationship. Take a step to the right and there is bigtime pain, there between you and your loved one, your neighbor, and the man on the street. To the left it is the same. Front and back, side to side, it is also the same. The pain looms as an immense barrier, completely invisible to others. This does not work. YOU want to be invisible because you know your pain is so incomprehensible and also unimaginable. It disqualifies you from a genuine conversation.

Pain trivializes the preoccupations of ordinary life to nothingness in your mind, until the concerns of others are small and imbecilic. Encounters are false, feigned, inauthentic, self abnegating. You know you have failed and that you will continue to fail. You just want to be left alone, by life. Just wasting away is better than never being able to come out and say, “I can’t deal with this pain”. This is the phrase you most want to say, and the phrase others least want to hear, the one they cannot in fact acknowledge. Their eyes set the context, which makes the phrase out of context. The context is what they can see, and pain is not part of that and never will be. The person who has no context cannot speak a single true word. In human affairs, nothing with structure and design exists out of context.

And so you will always be relating out of context, and that is no way to have a relationship. You pay your respects, by saying you are feeling good, and asking how they are feeling. Inside, you resent the fact that they are blind, do not offer to understand, could not understand on any terms, and will never, ever allow you to be who you are. It is just too repulsive, too selfish, too frightened, too confused, and too bewildering. Better they should completely misunderstand than realize you an escaped convict, your words and actions designed to put you outside the pain prison, to conceal that you are desperately hoping for a way out by putting on the clothes of someone who is not in pain. Your disguise is very effective, which is something you hate. It fools everyone but yourself because it is a disguise their eyes wear. The emotional burden is very great. The temptation to give up on relationships is an ongoing menace. Overcoming this to the degree possible is one of the greatest challenges of Central Pain.

In a prior article, we considered the difficulty of living a fully moral life in view of the restrictions on freedom which Central Pain imposes. Our conclusion was that while it was possible to hope to be moral, the inward directedness of severe chronic pain, and the lack of guidelines from moral authorities on the topic, made it extremely difficult to live what others might term a moral life.

Therefore, in addition to living in pain, the CP subject must live minus the self respect that moral living brings. Yet, even in the narrow limited boundaries, it is possible to devise and follow a moral code, although it will be of necessity one unique to the sufferer, which he or she knows is flawed and is unable to partake of the lineage of the moral principles which have become clearer over the ages.

Particularly in the aspect of rendering aid and service to others, it is very, very difficult to do this. What must be avoided is the erroneous belief that by relieving a burden on society one is making a moral choice. Survival is the moral. That must always be foremost. If one manages some successes in other areas, but fails on survival, the moral code was of no use. Thus, there is no alternative to structuring a morality based around survival, but not comprised exclusively of it.

In this article, we ask whether it is possible for a Central Pain subject to create real relationships. The answer is “No”. Just as morality must be amended, relationships must be altered to fit the reality of chronic pain. The awareness that relationships are not really working is painful emotionally and leads to further despair. In Central Pain, it is not just the individual who is injured, but all relationships are wounded as well.

When there are children, spouses, parents, and others who are entitled to affection, concern, and actions manifesting the same, there will be disappointment and failure. When the feeling is gone, on either side, the relationship is gone, and one part of the relationship will be having difficulty “feeling” beyond the pain. Pain is exhausting, humiliating, isolating, and an unbeatable foe. Sooner or later, it will wrest from the sufferer as big a price as possible. Relationships reduce the price, but the price which is extracted reduces relationships. The Central Pain person cannot walk out of the burning dysesthesia to create a normal relationship. At some level, the concern and caring will exist of course, but pain commandeers the consciousness so powerfully that any relationship will not seem very intimate or very real. This is one of the isolating aspects of Central Pain, one of the defeats, one of the heartbreaks.

Daniel Patrick Moynahan, at the funeral of John F. Kennedy said, “Every Irishman knows that sooner or later life will break your heart”. In that respect, all CP individuals are honorary Irishmen it would appear. Their hearts are truly broken, and they cannot help breaking the hearts of those around them. This causes tremendous guilt and frequently misguided behavior toward others to compensate for what the person simply cannot feel. A child may be overindulged, a mate may be bought off by any means possible.

Sustaining proper relationships is so terribly difficult that society ought to step in and be of help, but Central Pain is not recognized as meriting this assistance and so it will not occur. most painful of the pain states, and the most difficult emotionally. To a lesser extent this applies to friends or people generally. There will be little or nothing in common between someone who is in really severe burning dysesthesia and one who is not, even if that other also has a spinal cord injury.

It is simply not possible for others to read the “widow’s mite” (see prior article) that is given as having equal significance to what occurs in a real relationship. Once again, the CP sufferer must avoid feeling others would be better off without them. Education, persistence, and resort to counseling are all part of the burden of dealing with severe Central Pain. It is the most severe of the pain states, and also the most difficult emotionally.