Our own psychiatrists were tremendously helpful. This heightened our expectations, but then we began to hear from those not so fortunate so we are forced to ask, Where did these other hardhearted people get their training? Our beloved medical profession sometimes reeks when it comes to understanding CP.
We are the first to admit it may be inherent in the condition of CP itself. However, we do have to find somewhere to put that insulting, snotty, self-important neurologist who ran through his ordinary neurologic exam (omitting entirely the workup of nerve injury pain which requires special testing) and came up with nothing, and treated our condition like it was nothing, even as we wandered, or wheeled out into the street, five hundred dollars poorer, and wondered if we would have the strength to go on and face life another day. Where do we put this? Who will strengthen the weak knees if the doctor kicks them out from under us? This sounds like something out of Dickens, not part of modern medicine, but it happens every day to someone, somewhere, with Central Pain.
From the first time that Central Pain begins to make its deformed entry into the life of a person, a distancing occurs, which is really beyond the ability to describe. It is not exactly the equivalent of insanity, which takes away accurate reasoning. It is rather the awful perception that the universe itself is insane; and the blasphemous thought that perhaps God has made a mistake in the design of the human body. It is like discovering that the struggles of life and of humanity were all a gross trick, a Divine indifference, leading to nothing good but an unendurable, eternal life of suffering.
We cannot say what lesser forms of the disease may do to the mind of man. In its fully elaborated from, CP is so destructive, we are stunned to find comments of those who still attempt to work, or who rate their pain at say, 2 on a scale of 10. We would give both arms for a 2. We can’t remember when it has been below a 7 or an 8, and we have had the condition for as long as we can remember, the rest of life being so remote now. Many severe cases don’t think it is translatable into numbers at all, because it is something so different from ordinary pain. It is as Riddoch wrote, “A pain beyond Pain” Nevertheless, we are grateful to see that it does not always utterly consume the individual and may spare a great deal of the person’s psyche. If the comments and postings on the internet are any indication, the mercy of absolute numbness, if we may call it that, displays itself variously on the bodies of many of the quadriplegics in large areas, who may nevertheless retain Central Pain in areas of various size. Some of these individuals suffer a ghastly combination of paralysis as well as various components of Central Pain, always the burning, capable of being evoked by light touch, being the worst, but many of the others, such as the visceral pain, being of themselves, after time, an unbearable burden.
The burning is not the direct burning of a fire, but the flare which hits the skin, or just deep to it, after touching something hot, except that it remains, at various levels, but always with severe impact upon the existence. This burning is capable of being enhanced by certain harmless stimuli, such as light touch especially, stress, or movement, The remainder of life then, becomes for such people to avoid the evocation, or enhancement of the burning. The necessities of living, such as eating or other elements of survival are so essential as to be endured at any cost and except for the degree of movement and the acceptance of stress, not much choice is exercised, since even with a wish for the end of life permeating mood and thought, there is a life force or instinctual drive for survival which runs automatically through man. We do not know why we struggle to continue our existence, but that we do, while enduring the pain necessary to accomplish it. In this, we are not far different from those in other terrible circumstances of starvation, death of loved ones, or radically altered life and upheavals for which there is no emotional reserve. They persist, but it is not out of desire, but instinct.
It is in the burning itself that the Central Pain patient is truly transported out of human experience and inserted into a hellish one. It is this constant torment which makes one feel impossibly distant from God, from one’s assumptions about the fundamental goodness of Nature and the Universe, or whatever one chooses to call it. Individuals are born sane, and part of that is an assumption that the Universe for all its lethal radiation in the birthing of stars and other astronomical phenomena is a place humans belong in. Severe burning dysesthesia has the characteristic of convincing the mind that one is not part of anything, that terrible burning is as much a part of things as anything else and that it may be the real nature of things unveiled. In other words, that the devil has sway, and that the Divine is weak or missing.
This then is the psychological impact of suffering so great that words fail it, language flees from it, and ordinary thought cannot address it. A gulf appears between ordinary humanity and the CP sufferer which certain of the medical profession mistake for exaggeration by the patient. Exactly the opposite is true. The patient simply cannot find words to describe the suffering. They have been consumed in it, remain consumed BY it, and although they appear to be communicating concerning it, in a detached kind of way are really beings who wish to be free of the flesh, almost at any cost. It is that “almost” which keeps them alive. Perhaps some medicine may help and if not today, perhaps one that will be developed.
For the part of the doctor, he has an important choice to make. He must either believe the patient about the pain, which most doctors do with acute pain without a moment’s hesitation. Or else they must reduce it in some form in order to be able to apply the ordinary remedies, the typical methodology of medicine, which more or less assumes either a cure or an identification of a condition as incurable, in which case some sort of palliation is hoped for. If none can be found, then the doctor must resign himself to death of the patient in the ordinary fashion of human beings.
The problem with Central Pain is that it is interpoised halfway between living and death, so far as the mind is concerned. The doctor may not be convinced that such a place exists. For the patient, it is the entry into a zone where assumptions about life have to be abandoned. One’s identity most certainly does not follow him/her into Central Pain. They are thinking the thoughts the mind thinks in severe pain. These are not the person’s own thoughts. They become observers of themselves, rather than actual living people. Life exists at a distance, but one may not partake of it as long as the terrible pain holds the person in thrall.
This unreal state is nevertheless exhausting. It cannot exactly be explained why this is so, since one can hardly do much, or exert much to modify the pain except to beg off any excpectations by others and to avoid the stimuli, such as persisistent light touch, which exacerbate the pain. It is not these exertions, however, which are exhausting. It is the pain itself, in some evident but difficult to analyze way. It is the exhaustion of any overwhelming stress.
One may give a presentation, propose a marriage, encounter financial catastrophe or any number of things which do not require expenditure of physical energy to the point of exhaustion, but which nevertheless leave a person pale with exhaustion. The Central Pain person is not energized beyond what can be accomplished to avoid pain, and here again, avoidance and distraction are the automatic responses and occur without obvious, clear signs for observers. Still, the pain will leave the CP person pale, without any of the florid manifestations of vitality which almost unconsciously pour through the ordinary life, the endless exertions, concerns, connections, avoidances, etc. which comprise living. They shrink from hate but do not necessarily desire love. Their existence seeks mainly to minimize pain and to avoid the psychological stress imposed by those who would make demands.
Now if such a person goes to a pain clinic, they almost certainly have already exhausted much or all available funds and so they do not generally go without considerable financial impact. Many will travel long distances, when they travel for nothing else, the death of a parent, or any other thing, because the stress of travel is too great or too difficult. In very short order the CP patient learns that if they actually discharge their load of sorrow on the doctor in the clinic, it will be too much and take too long to tell and will result in rejection, criticism, and anger. This is too heartbreaking. The patient came for hope. Life itself provides all the castigation one can bear.
And so the patient is forced into a kind of obeisance, and an agreement with the doctor that the pain is not really so bad, when in fact it is the very severity and the need for relief it creates that forces the patient to agree with the doctor, on any terms, in order to at least keep alive the hope that some sort of relief is forthcoming. In fact, some small relief does come, It is usually in the form of sedation, not in pain relief. Still, sedation provides some opportunity for sleep, for escape from panic, for some assistance for survival. The price was to deny what one knows to be true, that the pain is truly terrible, but in desperation one takes what one can while the getting is good.
The problem is, that at some point, if things go well, and the patient thinks there is some little rapport or trust which has developed between themselves and the doctor, the patient may attempt to actually address the real impact of the disease, the overwhelming destruction of what life is supposed to be. He or she may blurt out, or mention in a hopefully inoffensive way, that the pain is killing them. They feel suicidal thought sneaking up on them and it frightens them. These moments do not go well. The doctor has just got the patient safely put away as another success or affirmation of the medical training, and out oozes the ugly confession that the doctor has done almost nothing. What could be more frustrating. The doctor may react in anger, as if he has been deceived.
If so, the patient is unreliable, and maybe everything which has been said, rather than being only a glimpse of the suffering, may actually be an exaggeration which has misled the doctor. These events, we repeat, do not go well, because the patient has an even greater sense of betrayal. They have exposed themselves as a pathetic creature, hardly human, but the doctor is now accusing them of lying, only as the truth has finally been approached. Why does it not sound more like truth. The answer is that there is no vocabulary for Central Pain. To accomodate one’s own lack of language skill, the novelty, and the language the doctor lays out as channels in which the discussion must flow, all have been borrowing madly from nociception, or ordinary pain.
The problem is that Central Pain does NOT feel like ordinary pain, there are just simply no other terms to use. Once again, the temper of the doctor may flare. Why have you been deceiving me? Why not speak openly. Pain is the one area where the patient traditionally helps the doctor with a good medical history and here you are speaking mumbo jumbo. If your pain were severe you would have no trouble describing it to me and you now seem to be adding parts, which you claim to be severe. Such a thing would not be. I will not go with you on this. I will not afford you the dignity of being a patient.
This little scenario gets played out over and over. Sometimes it is drawn out over time, maybe even over years, as the intimidated patients insists that the doctor is right on, that they would not think of challenging or questioning the medical conclusions. Deep down inside, however, the patient knows that little communication is taking place. The doctor does NOT recognize the various components as they are mentioned and does NOT wish to discuss them. He is NOT curious to hear of the strange pains which have astounded the patient and are perhaps shameful if the doctor suppresses them so.
Consequently there has built up over the years a colossal ignorance of the components of Central Pain. It is not that they have never been discovered. Dejerine and Roussy, Riddoch, Tasker, Boivie, Bonica, and others have done an admirable job of threading out how Central Pain DIFFERS from ordinary nociception. What is interesting is the short life span of these articles.
The events in the clinic as described above occur with such regularity than the doctor sincere in wishing to understand Central Pain must ground himself well in the literature, learning the words OTHERS have chosen to characterize the unusual pain perceptions, and then must merge this knowledge with the usually inadequate choices of words which a particular patient is using, which generally make a poor match with what is in the literature until one spends the time to really provide clues, and the familiar structure of the components begins to take form.
This is the opposite of normal pain, where even poor historians can generally provide a very good description of the normal pain to help the physician diagnose. Pain, which is “Old Reliable” in clinical medicine, becomes “New Unreliable” since the vocabulary is lacking. Without vocabulary the patient herself may never have categorized or put into specific terms the physical suffering which is occurring.
The offshoot of this all is that in most encounters at the pain clinic, there will be anything from awkward cramming of symptoms into words that do not really fit, all the way into hostile insulting belittling of the patient. These ends of the spectrum are not rare. Doctors who pride themselves on compassion may be performing the most awful rejections and excoriations with regularity, since they fail to understand how neuropathic pain differs from ordinary pain in the respect that one cannot fully describe it.
Resarchers attempting to portray this to graduate students not infrequently ask them to allow a subcutaneous injection of small amount of Capsaicin. This chemical affects the small C fibers which set a tone for pain receptivity, and the result is a bit of allodynia. Those with severe CP are not overwhelmed with Capsaicin since they have long endured feelings worse than that created by capsaicin, although they do recognize the similarity with their diffuse burning. The researcher however is greatly impressed. They have discovered a new, if awful, sensation. This simple act can provide a meeting grounds for two humans to communicate.
However, the researcher must bear in mind that the little wheal of capsaicin is just in one tiny area and disappears in a half hour. The Central Pain patient may have this and more on the skin, in the mouth, in the gut, from movement, in the dura which surrounds the brain, in the nasal cavities, etc. etc. etc. The blanketing by pain means that the researcher must still mightily use the imagination to understand and if this occurs to any degree something very awful and terrible appears before the imagination.
What appears is what constitutes life for the central pain patient. It is the magnitude and reach of CP which is indescribable as well as the components. Although it is a benign and inappropriate analogy, let us consider Mark Twain’s analysis of the “blue lake”, taken from his defense of Shelley’s wife. Twain is here concerned with the methodology of Shelley’s biographer in analyzing what is going on in his marriage, overlooking Shelley’s infidelity and blaming matters on some imagined failing in the wife:
“His insidious literature is like blue water: you know what it is that makes it blue, but you cannot produce and verify any detail of the cloud of microscopic dust in it that does it. Your adversary can dip up a glassful and show you that it is pure white and you cannot deny it; and he can dip the lake dry, glass by glass, and show that every glassful is white, and prove it to any one’s eye–and yet that lake WAS blue and you can swear it.”
Central pain is in this sense a blue disease. You suffer and yet you may not be able to point to the cause, because you have no words. You just see it, but when the doctor does NOT, as he dips each glass of symptomatology, one by one, he may become increduous, or even angry. We do not argue the point, as we have no words. We are lost unless the doctor has taken the trouble to read Roussy, to read Boivie (most have not) or to read the descriptions of S. Weir Mitchell who treated pain of central origin during the Civil War, astonished that some of his bravest officers acquired the temperament of the “most nervous girl” almost as soon as the condition of CP appeared.
And so we can expect incredulity in the clinics, and lots of it. It is abuse. It hurts. And it may push a non inconsiderable number of severe cases over the edge as the doctor proceeds to deal with the less severe, “more reasonable” patients, who fit more into his conception of how things ought to be.
Is it all hopeless. No, it is not. There ARE some experts in this field. There ARE those doctors who have actually done the hard work of reading and of informing themselves about this condition. They are not many, but they DO exist, and where they do, they exemplify the very best, not only of medicine, but of the human race.
I shall never forget my first visit to Dr. PatricK Wall when I told him I had Central Pain. He looked up at me sitting on the table very thoughtfully, and then he said very deliberately, “I am sorry”. God is intelligent, more so than Patrick Wall, and Dr. Wall’s statement gave indication that perhaps even God had not forgotten. That three word phrase had more healing power and more understanding in it than a thousand ordinary neurologic exams, filled with many busy things, nearly all of which are totally irrelevant to Central Pain, but allow the doctor to make an entry as if he has actually done something.
To this day, I can think back on the communication Dr. Wall afforded me with that simple statement and take comfort from it. May God reward him for his humanity. We went on to a very length and elaborate discussion of the medical aspects, which led to collaboration on a number of important advances, but it was that initial phrase which supplied me with what I needed, an acknowledgement that I was ill. God rest his soul for the knowledge Pat acquired and the effort necessary to acquire it. God bless J. Dejerine and Gustave Roussy for laying out the symptoms so we would not appear odd to our examiners, if they will but study the literature.
It is not that we need validation. It is that we want to think we are communicating, and that somehow the doctor can see the lake is blue, or fiery as in this case.
Even as our sympathies go out to CP patients everywhere, we also appreciate so deeply the contributions of those with eyes to see nothing, and to hear nothing, but to intuit in the way of the great clinician that the patient is ill. It is on the basis of their work that the animal models for CP were created which create hard evidence that is objective and provable and will eventually provide a cure for our suffering. We also thank the little rats who have to undergo CP, so that our condition can be studied.
We know what they endure and in the way of helpless humans express gratitude to those innocent little creatures whose sacrificed and examinable bodies provide the hard evidence concerning CP that our words and bodies do not. How odd that these little animals, given hardly any credit in this world, can bless mankind so. Their little bodies may eventually prove the means to our deliverance, as explored by the brilliant PhD’s in neurochemistry which are now laboring.
As for the hustling, bustling, ignorant doctors who punish us with their skepticism, we forgive you. We would not have believed this ourselves perhaps, if it had not actually happened to us. Still, you have the obligation first to reasonably disbelieve Dejerine, Boivie, and Tasker, before you can honorably disbelieve us. You must pay the price of study first, before you find us to be exaggerating. The truth is we are vastly understating, because there is no vernacular, no common shared experience by which to inform you. Also because we quickly realize there is a big stretch between your ideas and our reality, which we see is difficult for you or even angers you. We challenge your omniscience. Be careful, first do no harm, and hasty conclusions will do just that.