Earthshaking news that you won’t believe. Pain hurts. Severe pain hurts a lot. Using gas spectrometry, functional MRI, PET scans, magnetic evoked potentials, retinal dilation scans, and EEG, scientists have completed a 50 million dollar study which concluded that the two synonyms are really synonyms. Another group confirmed this in a stroll through a burn unit. The evidence that pain hurts seems overwhelming. Of course, there are those who keep making this fact a theory, an hypothesis, or even false.
“To endure is greater than to dare; to tire out hostile fortune; to be daunted by no difficulty; to keep heart when all have lost it–who can say this is not greatness”–William Makepeace Thackeray. Is this our rally cry? Unfortunately, not quite. It is a great halftime speech for a coach, but what happens when you HAVE lost heart, (also guts, bladder, muscles and skin)? Is survival still possible? What is the difference between hanging tough and hanging loose? The answer is three fingers. We are maybe two fifths able to hang on. Is this enough? See below.
HANGING LOOSE, or HOW TO SURVIVE THE UNSURVIVABLE
“Shakah, brah”. Okay, time for a reality check. With pain, we are talking about the most vivid, forceful, direct, unavoidable, commanding clear sensation in the human experience. How is it that people still don’t get it that pain hurts.
Central pain is not a race or a battle. It is a lifetime, which requires its own, novel, specific survival skills. This new life cannot plan ahead to any great extent, because the here and now is plenty to deal with. And since “Hanging Tough” is just a vague plan, it doesn’t really get the job done. It is, of course, the kind of thing we would have said to ourselves BEFORE central pain, but it is pretty empty now. Think you know us? Think again. Our pain lasts a long, long, long…long time.
Those who wish to help us might consider getting down in the dirt of the playing field with us, rather than sitting in the stands comfortably, giving spectator reactions. Yes, you can shout, but can you tell us which play to run? We don’t think so. YOu advice is as much rebuke as encourgement. In fact, it is nearly all rebuke for someone who has very little tough left. how do you know we haven’t been doing all we can just to get to this point?
We know we are defeated, but we still have to play out the game. What is your cheer for that, if you please? Somehow, “My sins and weakness put me here” seems out of place, although it sounds rather devotional, in a prison inmate sort of way. So does “Since I’m learning day by day. I hope the pain won’t go away”. That one is obviously a lie, so we still need something better. If there is learning in pain, the price seems usurious. Maybe slogans aren’t that much help after all.
Can you tell us how to allocate what little energy pain leaves us to solve the problems of life and feel that we have actually lived? And by the way, how LONG can you hang tough yourself? Forever? We don’t know about that. You wouldn’t be asking us to do what you cannot do yourself, would you?
We have asked the terrible questions. And the best we can come up with is that meaningless suffering is meaningless. We have been praying for solutions and the answer keeps coming back that if the universes just hands us the answer book, we wouldn’t learn anything. But what are we learning? Mostly, that you have to endure utter confusion at the same time you endure chronic pain.
And “Hang Tough” is a very confusing phrase for someone with C pain. You see, the day is going to play itself out, and moreso the night, and the pain will be demanding attention every step of the way. We have to clear away the noise, including exhausting ideas and urgings to do better, which don’t add anything to the business of refocusing away from pain.
“Hang tough” advice is equivalent to the medical student who reported on rounds that the tests had come back positive for cancer. The attending professor asked the student what he had told the patient. He replied, “I told her not to worry about it.” The department chairman expelled the student on the spot for the insensitive remark. As the student slunk down the hall, the attending physician called out to him, “But don’t worry about it!”
We are not that stern, but may we invite you to reconsider rushing in where angels fear to tred, with hasty, unrealistic advice. And by the way, while you reflect on what should actually be said, would you like a little acid sprayed on your skin, or perhaps a few coats of capsaicin, just to put your nerves on edge?
On one occasion, Frank Fasi, a politician from Honolulu traveled to Kahuku, on the North Shore. There he was struck by a friendly handshake from a little man from Laie who had lost three fingers in the sugar mill. He assumed the man’s wave and made that hand the symbol of his campaign, the famous “Hang Loose” gesture, which the Hawaiians now call “Shaka”. That is the survival sign too, “Hang Loose”, NOT “Hang tough.”
CP people don’t do tough. They do wandering, desperation, and sometimes even patience, but “tough” is a word for another world. And frankly, we would also trade for the missing three fingers in a heartbeat. “Hanging Tough”, is an attitude which is not available for chronic pain. It is what one does when going to the doctor’s office for a shot, not a philosophy which can be sustained forever against serious pain. “Hang on” might come closer, but provides no instruction for the real world.
Even if it had application, it is an abstract, and is one phrase, which is broad and too vague for any needed specifics, which are so much harder to come by than a motto. If we went around chanting, “The earth is round”, it would be just as true, and just as helpful. The flip advice givers must know this, and if they do not, then it illustrates their ignorance even more profoundly. People should use restraint in giving advice over something they know nothing about, and especially at becoming indignant over our failure to grasp the “obvious”. The only thing that is truly obvious is that they do not have central pain.
The problems we face are VERY practical ones. There is nothing more practical than the need to find some way to get around the pain in order to get through the day.
To be of any use, “hang tough” would have to be broken down into smaller parts anyway, so it would have some utility. Since deriving and declining the components of survival from a slogan is harder than simply devising methods on the fly, de novo, as we encounter huge problems, chanting the phrase as a mantra has absolutely no value.
Showing that things never change, S.Weir Mitchell, during the Civil War, expressed amazement when CP caused his bravest officer, afraid of nothing, to convert to the temperament of “the most nervous girl”. Yep. That’s us. Nervous girls every one of us. Except the girls in this crowd are amazingly durable. They tremble and quake along pretty good, fear and all. Those of you with severe CP will understand this perfectly. The rest of you will think it is cowardly.
Also a mystery is the notion by anyone with a degree in anything that they know all about severe pain. A brush with small pain supposedly qualifies one as an expert on huge pain. Under this theory, if you have bandaged a cut, heart surgery should be no problem. The ability to pour a pitcher of water does not qualify one for flood management. I have had a couple “owies” on my finger, not to mention a poorly aimed hammer and an old football injury; therefore, I am prepared to endure any form of torture myself and also to advise anyone else with severe pain. For severe torture, all you have to do is hold the affected part hard and squeeze till the pain stops.
Pain fits into those branches of science, where one man’s opinion is as good as another, making it fair game for crackpots, partcularly if they possess some kind of credentials in any other field of knowledge. In this it is like nutrition, weight loss, exercise, or speculation about life on other planets.
Just a hundred years ago, it was possible to write romantic fiction about any number of unknown areas, where talking apes, the mummy’s curse, fighting Amazons, men who lived a hundred and fifty years with full potency, a tunnel to the earth’s core and other fantastical ideas were not only acceptable, but considered highly plausible.
The world having been largely explored, the writer of fiction is now considerably circumscribed and must confine wild speculations to political intrigue, destruction of killer asteroids, ancient civilizations, and the like. Pain has emerged from the same time, trailing ideas that no longer apply, but are maintained by a coterie of armchair scientists, who prefer flat earth “logic” and pseudo-religions declarations to the hard work of learning pain chemistry.
Bearing testimony to worn out cliches, this collection of “experts” tax those with pain by mountains of advice, which can all be boiled down to one point, “Just deal with it”. In other words, “You ask me for a bite to eat, but I say to you rejoice, go and be filled, but do not bother me further”.
Pain is a bit of a threat. By editing history we can declare that modern man is so much better off than in previous civilizations. Nerve injury pain runs more or less counter to this, and so is an offense to a proud society. Withstanding pain also has an air of romance, religion, and mystery. It has never failed to attract swarms of crackpots, religionists, half-baked scientists, self certified experts, and outright kooks. In this, it is like brain science in general. The public has always preferred Dr. Frankenstein to Brodman, and will continue to do so. We need more than Hollywood widom and street advice for a solution to CP.
What is not realized is that very specific knowledge about pain is now available, making all the romantic, popular ideas obsolete. This has not stopped the deluge of advice, however. If anything, it has increased. As pain patients, emboldened by the fragments of knowledge which have come to light have begun to ask questions, the populist idess have been hammered ever more forcefully, hoping to avoid yet another encroachment on those areas of knowledge which the man on the street feel utterly qualified to discuss by virtue of having put in some time on planet earth.
Recently a national figure adjudged he was competent to advise those with SCI pain by virtue of having “talked” to some paraplegics. What was missing from this opinion piece was any evidence that the “talking to” had conferred any benefit on the paraplegics. Why is pain the one condition that must be treated by drill sergeants instead of doctors?
When people tell us to hang tough, is it really because they don’t want to face the fragility of their own identity and soul? Are they afraid of a terrifying secret that they are NOTHING before pain and would like to be reassured by our hanging tough? Don’t they actually know that what we are telling them is possible, and therefore a lurking threat which disquiets them?
Isn’t their skepticism really a skepticism about their own level of endurance and so they hastily declare that we “don’t look like we are in pain” in order to place one more hedge against what they fear in their hearts stares down at them in its hunt for prey? Is pain a contorted face or a contorted life? How long should the cries continue, for twenty years? The initial shock goes inside, as it must. Pain becomes sadness. The contortion moves to the heart and soul.
We have all wondered how we would do under torture. Would we deny God, curse Him, curse our loved ones, sell our souls to the devil over pain, or what? Our identity is very important to us. Pain is that awful monster that we fear has the power to make everything about us false. It is a stealer of souls, the destroyer of our identity.
Consider the following true story:
“When I was a child, I had a wonderful dog who never tired of playing. He got into some paint, and in a child’s ignorance I attempted to use gasoline to clean off the paint. Of course the dog was in agony, refused to hold still and the little dog who would never have harmed a flea was biting (hard), running, and crying. If pain can turn that little harmless creature, what is it going to do to the rest of us? I think about that dog when the burning on my skin rolls over every deflecting thought and makes me feel out of control and frantic.”
The most terrible question of all is what happens when we reach a limit. Sooner or later, the person in severe chronic pain will find themselves with conflicting wishes. One is the desire to live and the other is the desire to be free from pain. While running from death, there may be a secret wish, sometimes not so secret, that death may overtake you on your escape. The solution is a matter of love. If you have enough of it, you will make the right choice. The right choice has nothing to do with goals and expectations. It is about love. Survival of pain is the greatest victory.
There is a rational limit and an emotional one. The rational limit may actually be the weakest. Pain fogs the reason so that purpose in life becomes less clear. Only the emotional, resting on something inside, declares that morbid rational conclusions do not make sense. Even if rationality concludes that life is a play “signifying nothing”, the emotional side, however tormented, loves life or desires to.
Augustine said that “physical pain is the greatest evil”. All religions regard pain as the ultimate test. It IS the devil. Therefore, God and nature deliver us! It is our conviction that the prayer for endurance can best be answered if reseachers are funded sufficiently to stop nerve injury pain. We know enough of the chemistry to cure it if we will just quit throwing money away after trivia and vanity.
Then there is the existential questions, such as if we can’t stand pain, what good are we really? How good is anyone? What are our limits for endurance? Severe Central Pain comes unnervingly close to testing just that. Dr. Ron Tasker, the neurosurgery pioneer of pain in the spinothalamic tract, has stated that nerve injury pain can be the worst pain known to man. How would those advocating “hanging tough” as a solution actually do themselves if they were faced with Central Pain?
Chances are they are as bad as we are. No better and no worse. With time, past anything they thought they could endure, they would also rise to yet another painful morning, to hear some other expert supply the “answer” to the question that burns in their brains, “Hang tough”. Oh thank you. I never thought of that! I thought being a pathetic weakling would be a good strategy for dealing with the “worst pain known to man.”
Unfortunately, hanging tough may mean standing up to people with lame advice to hang tough. They are suspiciouslly like Job’s Comforters, that cheerful, glib, and self righteous bunch who follow tragedy everywhere, their one chance at feeling superior, dispensing hackneyed folk wisdom as if it were an original product, concerning something they know nothing about. Generally speaking, the more degrees a person possesses, the more willing they are do this, in the face of all those courses that should have taught them what they didn’t know.
In point of fact, most humans, including “experts”, don’t really know their pain endurance because few of them have ever been subjected to severe pain for any length of time, and certainly not over a wide area of the body. It doesn’t take CP to ruin a life. Even a cold could defeat a person, if it lasted forever. No human being not in pain should accuse another of being weak for having it. And that is precisely what we are doing when we glibly advise the CP patient to “hang tough”.
What if the part of the body being tortured was already painful from injury? What if it involved the genitals? What if it were humiliating us, making us act like an animal? What if we were kept awake (named by POW’s in Hanoi as the most difficult torture of all, which seemed to break everyone). What if we had been tortured for years. Still feeling smug about pain? Our best wishes to you, our naieve friends.
Do you really think you know better than others how to hang tough? Does a PhD know more about this than someone with SCI and CP? We submit that CP patients are professionals about coping strategies for pain, and hanging tough ain’t one of the strategies available. Hanging tough is for tough guys and pain takes that away. We are the weak ones, scuttling in the corner for our crust of life.
It is hard to understand the pontification of emotionally pious parties who tell pain subjects to “hang tough” or to “buck up”? What does that mean. Does it mean we should attempt to live as if we did not have pain, drain an exhausted will by attempting to do all the things normal people do? Does it mean stay brave for six months, six years, sixty years? Does it mean to be brave if the burning pain is applied to five percent of the body, fifty percent, or one hundred percent? Oh yes, the devil is in the details.
If the individual with five percent of the body in ONE type of pain is supposed to hang tough, what is the person with one hundred percent of the body in multiple types of pain supposed to do? Hang tougher? How about surrender most of what makes humans tick and try to get through THIS night. When he awakes from his fitful sleep, guess how much help it is to advise him to “hang tough”. This presumably means “Like me, I am tough”. We recommend the capsaicin challenge. The CP patient, who has been assaulted by pain for years, will take the shine off the toughest of them, and the CP patient is anything but tough. More like tenderized. We survive by jettisoning pieces of what life is made of.
Given the obvious features of pain, and its power, how is it that we have national figures, famous people in the world of psychology who continue to blow off pain like it was a bad grade in school, getting fired, a divorce, or post traumatic stress in wartime. Who are they kidding? Have they even stopped to think about what severe pain might be like? Earache, toothache, sunburn, finger in the car door, touching a hot stove, old football injury, and low back pain are part of ORDINARY life. None of them qualify an “expert” to comment on severe CP.
The trendiness of a particular suffering in society’s eyes is no reliable measure for its weight. The “trend” should always be to apply an adequate remedy if possible and to make no one suffering trump another. One particular “pain counselor” was reported to be telling clients with pain, that they should “buck up”, since he, the counselor, had overcome the “greater injury” of unwanted touching by a cousin of the same age, in his twelfth year. The unwanted touching was degrading and damaging, but pardon us, no matter society’s greater focus on such matters, does not assign central pain to an inferior position from which we can survive by shaming based on the particular counselor’s opinions about the equivalency of the two experiences.
Qualifications are from specific training, not by extrapolation. From what do we project to severe pain? What experience is equivalent to continued severe pain? insanity, beareavement, disfigurement, are these experiences transportable to ongoing pain or is pain an event unto itself? We simply do not know. We desire no contest with other sufferers to see who has it the worst. God will see to that. We just want something to help us get by, and subordinating our predicament to some other experience of common note, is not going to promote a solution. Weighing/measuring of suffering is impossible anyway. Questions of religion cannot be solved by popular vote. Neither can medical issues. Things are what they are.
We are not tugging on the tiger’s tail here. We simply do not want to burden CP subjects with solutions aimed at something else which impacts on the mind differently.
Frankly, former torture victims tell stories remniscent of CP, and while mental anguish continues, the torture has ceased, and so the time element makes for a fundamentally different experience.
It is not being unsympathetic to say this. Indeed, it was the comment of some Vietnames boat people which first drew the comparison. One lady did not want to talk about the dehumanization of her experience, and the group understood perfectly the CP sufferer who said, “The first time I talked about CP, the other person just said, ‘I have that too.’ She was talking about athlete’s foot. The second time was when someone who knew me before asked about CP. Wanting to avoid my earlier experience, I went through the whole gory tragedy, the whole heart ripping, weeping business, all the details, every kind of pain and everywhere the pain was located. The other person made no reply of any kind. This threw me into a remote corner of the universe. I have never been able to talk about it since, not really.”
Groups of sufferers are not in opposition to each other. We attempt to support one another. There are many people struggling with many different things. CP patients simply do not want to be marginalized as a consequence of being a small minority.
When most with Central Pain also have some paralysis and can evaluate the difficulties of both, why is there a positive assumption, without investigation, that we would all accept more pain if we could get rid of the paralysis? Davidoff and others have shown emphatically that CP patients would do the opposite, accept more paralysis if the pain would end. Why is this? It’s because it’s PAIN.
What is there about this that observers don’t get? They had a bad experience, it really hurt, and now they think they know pain. Not so fast. How about upgrading the pain to the level of acid on the skin, spreading it out over the entire body, and making it last a lifetime. This question is just debatable words on this page, but when the pain is actually there, the whole world changes. Believe it or not, you can be reduced to a whimpering mass of protoplasm by severe pain, PHD or not, few if any exceptions. Most will cave in five minutes or less with a thumbscrew. That’s one brief pain in one tiny part of the body.
What is couched as “pain advice” is really just a disbelief in the existence of pain, footed on a failure of means of measurement. They say pain is best dealt with by hanging tough, but what is really behind it is the difficulty in believing that terrible pain happens and is present in us. The real problem is that their imagination is too cramped to allow room for what they cannot see, and they imagine that all truth must be couched in terms of their own experience. Isn’t this the basis for all prejudice, wherever it occurs?
When experts, (nearly always self appointed and amateurish about pain) advise us to hang tough, what is thought to be emotional counseling is really nothing more than a failure to measure. If the advice giver had a way to measure pain, their advice to hang tough would stop at some point. At some ineffable level of pain, they would stop giving advice and start wringing their hands. Most with severe CP have passed the point of platitudinous encouragement in the first month of the condition. What remains is nothing short of hanging onto life, a life that no one without severe pain could possibly recognize.
We reject those who tell us to hang tough, and challenge them instead to support pain research. It is time to start exposing the scandal, the brutality, and the shame of indifference toward pain, and to fund studies which will end central pain. If there is any question, the doubter can be obliged in his doubt by injection of capsaicin to activate the very channels which are responsible for central pain.
The VR-1* epiphany will be terrible to experience, but fun to watch for those of us who grow weary of the ignorance, arrogance, and indifference. Hang tough my foot. They will be crawling like worms just as we do in the face of this red eyed monster in no time at all. It is too late in the day to pretend that paralysis is more distressing than severe pain. As terrible as immobility is, the data indicate that really severe pain is worse. Didn’t we already know that? Do we really need to investigate this? Do we have to take a sideways slap at our brothers and sisters, who like us, have paralysis, in order to get people to stop and think? Who is forcing the question of which is worse. Certainly not those with CP, as we too often understand the awesome problems of both conditions.
We intend to fight for restoration of motor skills after spinal cord injury, and we know that those with SCI will fight for our right to relief from pain. Christopher Reeve Foundation supported studies on CP even though Mr. Reeve did not have it. Suffering in any respect makes us want to end suffering in all respects. Thank you to the Reeves for reaching out to us, even when they were in extreme need themselves.
A little etymology here. The word “diabolical” comes from the greek word “diabolos” which means to “hurl against”. The devil is therefore he who hurls accusations against mankind, our accuser. To escape this role, get off your smug, self righteous posteriors and support pain research. If you oppose it, just remember that one in six Americans will suffer from a chronic pain state at some time in life. Feeling lucky? Feeling tough? Here’s a suggestion. Don’t wait until you are there to begin supporting pain research.
Mahalo for your help and support.
*VR-1, known more recently in the literature as TRPV-1, is the calcium channel in the membrane of a pain neuron which generates the current for chronic pain. It is allied with acids which excite pain nerves. These “acids” and “acidifying” chemicals include arachadonic acid, prostaglandins, fatty acids, interleukin, cytokines and leukotrienes, as well as the kinases which drive them. VR-1 is activated by capsaicin.
**Dysesthesia is the burning pain of CP. It is often made worse from touch or temperature change. It can range from “indian burn” level to the utter agony of acid sprayed just under the skin. The most common descriptor chosen is “like acid under my skin”. It is not just a metaphor since acid really is being produced around the pain neurons. Those severely affected cannot wear clothing.
We play a semantics game when we talk about central pain. Words change their meaning the context of CP. This is not so unusual. English is the only language where your house burns up as it burns down. An alarm clock must go off to go on. etc. etc. The burn of CP is not far from the burn of dry ice, and so it goes.