This article stems from the comment, “There is a hole in my memory and in that hole is my identity.” Amnesia is defined roughly as forgetting what one would normally remember. It is comparative to the ordinary individual. In a sense, since it is a matter of degree, and may be selective, it is not easy to define amnesia. It is however, always important to remember who you are, even as the the feeling of being “lost in pain” is rather common.
The core mission of painonline is not to dispense information, but to gather it. The surveys are the heart of this project. Collection of verbal descriptors of central pain was the specific commission of Dr. Patrick Wall, who began the database. However intense was Dr. Wall’s scientific orientation (and he was among the most rigid of scientists) there beat in his heart a deep concern for humanity, which was hidden in British propriety, but emerged despite himself in the most tender attempts to render practical support.
If you have ever been to a medical meeting you will find that these great scientists are in competition.
Their egos, which drive them to do the work, thank goodness, create a mixed atmosphere of erudition and competition. It is more like a meeting of the United Nations, with divergent agendas. The particular research one scientist is doing will be promoted by him as the most central to the problem, the most innovative, and the most awesome. Pain meetings are never emotional about pain but always emotional about who is on the right track to stop it or how it should be diagnosed or classified.
There is, on the surface, little or no compassion being displayed for pain patients (which can get a little bit creepy, sort of like the dispassion during an autopsy), with a strong contribution by those who feel it is their life’s mission to expose hysteria, exaggeration, and the feigning of pain. (They are the pain McCarthyites, who, failing to cure pain, become annoyed by the malingerers, and imagine it is still doing real pain research to harp on those who do not have it).
Almost without exception the pain malingerer fanatics are very weak in biochemistry. The real scientists, (usually PhD’s) who can induce pain without any trouble whatsoever in their lab animals sit politely through the talks on the evils of pain fakery, and then get on with the business of talking about how to cure real pain.
The “pain is fake” expert (usually an M.D.), who frequently winds up sounding like the nuts who say the Holocaust never happened, may be so exercised because the speaker has a relationshiop with insurers and wishes to be able to claim to be an expert on the topic in court, but mostly it serves to protect their egos since so much severe pain cannot yet be treated. Castigating pain patients is a shield to their impotence at therapy.
Really obnoxious hate mongers have a way of making you say things to oppose them, to divert some of the damage they may be doing to any naieve physicians in the crowd who may go home and wreck someone’s life. The few disparagers I have wasted time confronting are not even aware that central pain can be divided into spontaneous and evoked; nor are they aware that it may be anything from burning dysesthesia to lancinating electric pains. Why waste your time listening to patients when the closed minds have already decided the patient is a neurotic and disgusting fake, anyway. Just a note of caution, all of these people make a living seeing pain patients. Heaven help you if your doctor is a closet pain disparager. They may not reveal it since they are taking such large sums of money from you to “evaluate” you.
Be that as it may, I have never met a pain disparager who could carry on an intelligent conversation about BDNF, TRPV-1 channels, resiniferatoxin, AMPA or NMDA, and although they love to throw in words like “placebo”, “secondary gain” and “prefrontal cortex” (which can be spoken of very superficially), they really cannot discuss the insular cortex or the operculum either, although both are highly relevant to knowing how much pain a person is undergoing. They are pseudo-scientists, or more kindly, badly out of date. For some reason they talk a lot about serotonin, dopamine and neurotransmitters in general, as if use of the word “serotonin” puts them in the same league as real pain scientists.
Rarely, someone from the audience interjects sad personal stories, but generally the speakers are the essence of cool and unemotional dispassion. Certainly it would be a professional gaffe to express sorrow at pain in the lab animals studied (despite the fact that Bill Willis once did this), let alone in humans. They are like funeral directors who respectfully do not participate in any of the sobbing, even though it is inevitable for others.
To be fair, since pain hurts and people resent it, there are a fair number of people with minor pains, say back pain, who make it a life ending matter, become addicted to opiates, and scare the pain doctor into thinking his license will be revoked if he gives them what they want. Fear of the federal opiate regulators has made callous monsters out of many a doctor who might otherwise give a darn about suffering. Also, pain chemistry is a real chore to learn, whereas badmouthing is effortless.
I first met Dr. Wall at one of these meetings where he was the chief “referee” of the papers being presented. He typically sliced up papers presented, showing that one failed to explain how the pain model used might differ from other models, how they had failed to reconcile their work with other important papers, why he was unconvinced the data were specific enough, etc. Yet, he had a sense of humor that allowed him to say the most critical things and get away with it. He spoke science like a voice actor, sounding somewhat like Sir Richard Attenborough (the owner of “Jurassic Park”) and people remembered what he said. Dr. Francis Crick was much the same type of person. With both of them, their fame allowed them to be a bit eccentric, which is to say British, and still draw affection. We appreciate the contribution of both these men to painonline.
Lest it be thought it was all in the nature of his personality, Dr. Wall had a scientific reason for his dissent. He was not “Simon Cowell-like” in his directness, but he did not like people to present preliminary data as if they had actually solved something. Because we have not actually solved nerve injury pain, nearly all pain research IS preliminary, and Dr. Wall kept making them admit that they needed to do so much more. This was annoying to the various chairmen of departments who had to face his scrutiny. They were giants in their local scene, but here at an international level, they were as graduate students again, and any soft spots in their research were probed mercilessly. Wall was Zorro, and they were the fat sheriff.
He generally saw right through their statistical bar graphs and colorful powerpoint presentations and cut them to shreds. By comparison, he was always the first to defend some timid graduate student whose paper he felt had merit, even if the rest of the crowd disdained the lowly person of no repute. His defense of Carl Saab, who now writes for painonline and has become powerful himself, made Wall enemies, but Saab turned out to be completely correct.
Those who work in a field that is not going anywhere, often present what are called “rocking chair papers”. They create the illusion of movement, but they are not going anywhere. MOST papers in the medical literature are rocking chair papers. Only occasionally does anyone present something new and significant. These “so what” papers are the medical equivalent of NASA’s fondness for giving names to whatever rocks appear in the eye of their cameras. It doesn’t really advance science to give them names, but it sounds dramatic. Wall was our friend, but sometimes the enemy of poser researchers, who thought their big names and powerful positions would give them a free ride.
I presented my paper near lunchtime and to my amazement, Dr. Wall asked to speak to me privately. He was supposed to be out listening to more papers, but the scientist in him had found a curiosity, a scientist who had done radically new MRI modelling of changes seen in central pain. He wanted to know more. He did not at first know that I was ill. I will never forget his hard scientific questioning and his skeptical peering at me through his glasses, which acquired a look of astonishment when he learned I actually had central pain myself.
Rather than using that universal and dreaded phrase, the accusatory compliment, of saying how good I looked, instead his eyes softened and he said “I’m sorry”, in the most understanding and compassionate way. To this day, that is still the only occasion ANYONE has ever said that, and from him it was almost as if God were saying it. Perhaps it is the only time anyone has ever understood the massive severity of central pain, so he said it not so much from compassion, but from dread. Nevertheless, when you are not certain even God still remembers you, having left you dangling in unbearable burning, it was like a bath of relief to hear a human say it in that way. His open mouth, comparing what he saw to the realization of what I was actually experiencing, made him say “I’m sorry”. It was not so much personal to me, but reflected his wealth of information on what central pain was made of, and he was sorry to see any human being who had to endure it. Now you know what drove him, the really big heart of the great doctors. Tasker, Wall, and Bonica can truly be said to have driven the scientific world to study nerve injury pain. We owe them so much.
Many of you have never once been told “I’m sorry” by anyone who had the slightest idea what you were talking about. You will understand why the acknowledgement meant so much more to me than his assent to the principles I had advanced in my paper. In a way, he was acknowledging my humanity when he and I both knew central pain means it would never be remotely the same for me.
When I am really feeling down, I like to remember his words and the expression of concern in his eyes. Unlike so many, he knew from years of treating CP subjects that central pain was the bigtime, the Armageddon of pain states, the onset of true agony. THIS is why I agreed, despite being very ill, to assist him in gathering verbal descriptive data. Until he died, although he continued to be just as rigorous in his scrutiny of the data, he was delighted to make the association because I could use language he did not have to struggle over to grasp what I was talking about, in telling of Central Pain.
Just three weeks before dying of prostate cancer, his last communication spoke not of himself but of specific projects that should be carried out to help solve central pain, and who in the world was the best qualified to perform such experiments. In proper British form, he never mentioned his own pain in any communication.
After he was gone, I found surprisingly, that many whom he thought were friends actually resented his careful dissection of some paper they had presented and had no wish to fulfil or answer his curiosity on some point. Still, everything he mentioned has now been done, although often it has not been done by the people he recommended. He was prescient about where research was headed and where it needed to be headed.
This author has tried to emulate his example. In general, my first expression in e-mails to afflicted individuals is to let them know I am sorry they have central pain. I want to mentally pause and take the person in, even though it is especially dreadful to hear their story since I do actually understand.
Out of these hundreds of encounters and the surveys, there has emerged a pattern of commentary from individuals wherein they reflect that they no longer know who they are. Their identity has been lost. Many have also lost their working memory.
In consequence, they find themselves strange people in a strange land., Their amnesia is not the common variety but they have forgotten important features of who they are. Punished and beaten, disappointed and rejected, unable to make a satisfactory reply to questions about their pain, they are morphed into something new and tragic. They live in a pain dimension and cannot hold onto their ordinary way of thinking. Is this amnesia? To me, it is. They think less accurately and they think more slowly and they think ABOUT something that does not express their true identity.
It is time psychologists attempted to help reorient Central Pain sufferers. They need reminding about elementary features of life which are buried by the pain. They need to be reminded of feelings they do possess but which lay hidden under the layers of suffering. No one talks about pain “amnesia”, but most of these people find they have actually forgotten their frame of reference, their identity. It does not take years, but the forgetting seems to come on about the same time as the dysesthetic burning in many. Possibly this is due to some undetected brain injury which occured with whatever injured their cord, but the matter keeps coming up frequently in severe central pain of whatever cause.
More should be done to understand it. Eventually, when fMRI gets good enough, we will find physical evidence of altered memory. For now, we foot our conclusions on the survey. If we listen carefully enough, CP subjects do not lead us wrong, even when they have no vocabulary to accurately describe central pain.
We are sorry, whoever you are, and whoever you have become, that you have central pain. If he were still with us, Dr. Wall would be sorry for you too. And because it felt like God in him, the Divine is also aware that you suffer and will eventually compensate you.