What determines frame of reference in thought processing?
Note: Because this article addresses one of the questions spinal cord injured people ask about gender identity, it is not for the squeamish, and somewhat graphic medically, so it is not recommended reading for children.
Painonline contains many articles regarding the loss of identity which is experienced in severe central pain. It is more or less axiomatic that self identity is not just a frame of reference, it is something fundamental to the human experience.
It does not take much imagination to realize that if one finds oneself thinking completely new thoughts, having completely new priorities, and attaching totally different significance to various life experiences, there is a troubling question of who the person is.
Fundamental change is considered salutory in the religious context. The putative change is sufficiently profound in some circles to have drawn such terms as being “born again”.
How about in the pain context? In a different sense, “born again” seems potentially valid here as well, although many central pain sufferers might choose something different, such as “deborned” or even “destroyed”. If the impact is the reverse of becoming a new and improved individual, most would put it more in terms of a burned out hulk. What is left is not so much an altered perspective, permitting heightened insight, as it is the ultimate distraction. Pain is just so powerful. It is an open question whether the person who has “got religion” is, in the mortal sense, more fundamentally changed than the person who is immersed in severe, unending physical pain.
We grant that adversity has its uses and are minded of Maxwell’s caution against hasty guessing in the “algebra of adversity” and devaluation of “the sandpaper of circumstance”. The question is whether the shaping that is going on is refining or disintegrating. Sometimes it is very difficult to tell.
Coping with central pain requires such estensive and all encompassing alterations that the field can hardly be addressed. One relates to inner drive and ambition differently when the number one priority is to avoid evoking the burning dysesthesia. In fact, the preoccupation is so great, it is hard to come up with what might be number two. Perhaps number two begins at what would be number one in ordinary people. Or perhaps, more frighteningly, the priorities and perceptions of ordinary living become distant memories, of diminishing significance, except for times when events converge to ease the dysesthesia.
No one realizes more the alteration in identity than the central pain subject. It is as if one has a fascination with the rudiments of survival. In a big broad world, it is as if one cannot take ones eyes off a particular object and the great deal of other is discarded out of mind as unavailable.
How does it feel to recognize oneself as fundamentally altered. If an arm is missing, major accomodations and adaptations must occur. None of them is pleasant. However, when the identity is gone, the bewilderment, disorientation, and confusion is almost overwhelming. It is difficult to maintain a values system in such a condition. It is admirable how many central pain patients are able to reconstruct some sort of social order despite the pain, but there is an element of the pathetic. One can go through the MOTIONS without experiencing the EMOTIONS which guide and modulate experience.
Consider for example, a hypothetical spinal cord injured person who through various means can still experience ejaculation, but cannot feel pleasurable sensation. Let us add the further variable to our hypothetical that the person with dysesthesia cannot experience physical pleasure from any touch whatsoever, not just sexual touch. Has this person nevertheless had sex by virtue of ejaculation? It is a matter of semantics. It is certainly not the sex your mother didn’t tell you about. Real sex has a reward. Without it, human life on earth would cease. Sex is not a human misfortune. Lack of capacity for it is a human misfortune. If childbearing is not the object, does sensationless ejaculation have a reward? If so, what is it?
Emotionally, whatever sex conveys has been fundamentally altered. Of course,the person can decide to attempt to get around the loss of the emotional comfort of physical pleasure, to forgo what touch provides, and attempt to use visual, gustatory, or auditory stimuli for pleasure, but how good are these substitutes? Would any human being forego the pleasure of touch in order to hear beautiful music? It is beyond a Hobson’s choice. It is about identity. And of course, central pain is not an absence of touch, it is the substitution of burning for it.
Even a cursory consideration would lead to the conclusion that such a person needs support from other areas, such as praise, social recognition, friendship, and intellectual stimulation. However, pain exacts a heavy tax on all these modalities of life reinforcment. A quantitative evaluation of what therapy might be required to actually help someone in deep pain live a semi-normal life goes to some things which seem almost absurd on the surface. For example, should the public transportation systems provide free passes to museums, to theaters, to the seashore, to anywhere that the pain can be diminished or perhaps even forgotten for a time? What health plan would pay for this?
Surely the public would revolt at having its tax money so allocated, yet such matters are presently the only remedy available for the merciless burning which must be endured. Without elaborate support, a central pain person shrinks. MRI shows that even the brain volume shrinks as the erosion of self is worked by constant pain.
Recently, some psychiatrists at Duke took a look at the issue of pain as a central event in life. See Perri and Keefe, Journal Pain, December 2007. These authors gave questionnaires to 47 patients about the “experience of persistent pain”. This article is extremely well worded, as the authors indicated they were interested in how persistent pain “serves as a turning point in the individual’s life, forms a reference point for personal identity, and affects the attribution of meaning to other life experiences”. These are the BIG THREE psychological parameters which characterize the “pain astonishment” which blasts away at the meaning of life as the pain becomes mortally eternal, ie. pain as a turning point, identity, and the meaning attributed to life experiences.
It is not too surprising, and in fact, inevitable, that after studying these patients, Perri and Keefe concluded that “The experience of persistent pain can serve as a major turning point in patients’ lives, affect patients’ interpretations of other life events, and become a key component of patients’ identities.”
If a doctor has seen ten cases of bona fide lupus, the odds that she will diagnose lupus in patient number eleven are very high, higher than it would normally be. This impact of experiental effect is called heuristics. It is the tendency of ongoing repeated happenings to shape our perception of reality and likelihood. Since pain is ongoing, it is not reaching to say that if pain has ruined the last ten years of one’s life, it is not surprising for the pain patient to face the next one minute of life with lowered expectations for happiness. This is in every sense an heuristic pehnomenon. With central pain, the fears prove to be well founded, and thus the heurism increases to a point where something has to give.
There has to be some foundation mental perspective from which to face the certain and neverending tragedy while still giving life meaning. For most central pain patients, this means avoiding stress of any kind. Someone said, “It gets easier when you stop expecting to win.” Conservation of energy becomes essential. Still, it is frightening to watch human life and loved ones float past as the CP patient hangs on and measures their efforts toward others as feeble and mostly ineffectual. In other words, the social and psychological effects of central pain are massive.
Perri and Keefe have adopted a new term, “centrality of event”. It is a very useful term and we like it. It is true that “heuristics” also describes such matters, but few people are familiar with the term. Creation of a new phrase, “centrality of event” may serve to remind the public and professionals of what Augustine said many centuries ago, “Physical pain is the greatest evil.” Those who have been unmade and undone by pain salute the psychiatrists who are studying what they ought to be studying, the magnitude of necessary coping, rather than simply making standoffish and unhelpful comments about pain being the result of mental weakness. As we have said before, such ideas never get past the capsaicin injection challenge. Still, it is nice to see psychiatrists recognizing the centrality of the event of persistent pain. We thank them for the vocabulary and for their enlightening perspective.
Now, how about that ride to the museum? No? Well, at least the sky, the mountains, and the ocean may still be available. The act of experiencing them will not be considered justifiable therapy by others, and certainly will not be seen for what it really is, a means of survival.
We assure Perri and Keefe that central pain is a central event.