Severe depression is almost the norm in Central Pain. It is surprising that it has largely been ignored. Perhaps the person himself does not realize how much depression is present. Injured by cord injury or stroke and knocked into an incapacitating state with central pain, it is tough to avoid the serious consequences of depression, which rob one of judgment, or even worse, the motivation to follow judgment. .
In the movie, “Mean Girls” is seen a delinquent mother competing with her promiscuous daughter for approval by teenage boys. Ever see an old person try to behave as if they were youthfully glamorous, or a Don Juan, Sort of pathetic, isn’t it? Authentic living cuts down on the fantasies, but it also cuts down on the huge mistakes. Vanity doesn’t exactly go well with Central Pain. With CP, all you can do is be yourself. If that isn’t good enough, nothing else will be.
In a communication from a central pain sufferer, it was clear that depression was not only present but pervasive and possibly permanent. The person described periods when the realization came that a very long time had passed, almost in a dream. Important things had floated by with the individual unable to plan, execute, or even respond to the situations around. This is characteristic of severe depression.
Recently the press carried the story of psychologists counseling voters for post-election stress. It is unfortunate with all the attention to depression in comparatively minor situations, that psychologists have ignored the massive depression which follows the disruption of life which central pain brings. Curing depression without curing severe pain is a dubious undertaking.The nonfunctional aspects of life must be hedged against. Family must be alerted to the likelihood of difficulties and challenged to step forward to shoulder altered roles in spousal and parental dependency so as to “make up” for the unproductive harvest of pain depression. This is no different from pushing the wheelchair of someone who is paralyzed.
In a prior entry, “The Donner Pass Phenomenon”, it was emphasized how much survival of pain hinges on lowering expectations. The reason for this is the simple fact that it makes no sense to try to run faster than one has the strength to run. Pain is disabling and exhausting, and both the sufferer and those around the sufferer MUST lower expectations to meet the reality. Sometimes those dying of cancer feel it is their duty to proclaim to the world that they are going to “FIGHT IT”, as if cellular processes attack only the weak minded. Proliferating cells act with relative indifference to declarations, and an intelligent resort to the best medical care is the preferred choice. “He who fights and runs away, lives to fight another day.” –Edna St. Vincent Millay.
Similarly, there is an obligatory position on the part of some that anyone in pain must meet it by “fighting” it. But what does fighting mean? If enduring pain requires energy, which it does, how does expending huge amounts of energy in a “fight” benefit survival? Far better to assess the situation, revise plans to meet the realities, and hope that healthy scientists will FIGHT the disease successfully. Neither in war, nor in a contest with pain, should we send the seriously wounded to battle. Surviving pain is about tending to the needs of the injured in realistic fashion. Paradoxically, the real “fight” is often the necessity of avoiding the tendency to fight.
Courage is often about endurance, the intelligence to ration mental resources in such a way as to carry on. This is wiser than making a show of bravery which is pleasing to those around, but futile in the overall scope of things. Where chronic pain is concerned, especially in its most severe form, CP, there is no doubt whether we should attempt to be the tortoise or the hare. Show me a hero and I will show you a tragedy. The CP person who proceeds as if they can be normal will be borrowing from Peter to pay Paul and the debt will come due soon enough. Severe pain has its own rules for living.
It does not matter what society thinks you “ought” to be doing. They would fold soon enough if they labored under CP. YOU are the only one capable of determining what you can do, and if you are wise. you will not overextend yourself. There are difficult times ahead, and you had better keep a reserve. Night must be gotten through. Fatigue can be a killer. Don’t drive drunk and don’t navigate through severe pain exhausted.
In “Donner Pass”, the danger of taking shortcuts in an attempt to accomplish an original objective was emphasized. When the Donner Party got off to a late start, in order to make up time, they attempted a disastrous shortcut, which led to cannibalism and death. There are TWO aspects here. First, is the insistence on maintaining original expectations when they become impossible. The acceptance of limitations, whether imposed externally, or as the result of internal processes, is a cardinal step in survival. Second is the wisdom in avoiding SHORTCUTS to achieve the original expectation. This behavior shows that the expectations have not really been lowered, after all. Shortcuts can be lethal.
From correspondence which has been received, it seemed appropriate to review again the mental processes which pain arrests, and those it sets in order.
The almost universal request is that central pain sufferers JUST WANT THINGS TO BE LIKE THEY WERE, as if this one “small” thing is not asking too much. How unrealistic! Similar are requests for “just” the medicine to stop the pain, when it is clear from all points that one of the hallmark characteristics of central pain is that it does not respond to ordinary pain medicines, such as opiates.
A clinician can wind up talking to the wall if he/she informs the patient that no satisfactory treatement is available for burning dysesthesia, only to have the listener say “Yes, that is all well and good, but what do you have for the pain. I cannot stand it any longer.” There are times when sedation, not pain relief, is all that can be offered. What IS available for the pain is lowered expectations. For example, if light touch burns the skin, then the person and his/her family MUST make accomodation to this. Sleeping arrangements, bed clothing, going without shoes–all of these things which reflect lowered expectations must be put into place. It is not only the patient who must abandon unrealistic demands, but others as well, such as spouses, who become upset because the CP subject cannot make things just as they were. The “just as it was fallacy” can breed bitterness and squelch love.
Desperate runs toward making things “JUST LIKE THEY WERE BEFORE” wind up in total despondency. There is a tyranny in despondency. The grief hypnotizes, and years can pass, as if in a dream, before the person wakes up and realizes they have made grave error, or overlooked something that obviously needed to be done. These oversights, due to preoccupation with the pain, really hurt. Frequent inventory of life should be conducted, not with an eye to self condemnation, but with a focus on the important principles of living, so that huge missteps are avoided.
Now what about shortcuts. It is discouraging to see the high incidence of drug addiction, alcohol abuse, and other vice to which spinal cord injured pain patients are prone. The element of escapism is obvious. The injured person gives up on life, and takes a shortcut across Donner Pass, to try to feel normal. This is understandable, and no particular argument can be made against it, except that it just doesn’t work. The injured person then has not only pain to deal with, but also addiction.
The central pain patient cannot afford to add more problems. They cannot take disastrous shortcuts which only make things worse. Many of the CP subjects who correspond here confirm that there is an unfortunate tendency to cast around desperately for some experience which will hide them from pain. These experiences must themselves be positive to have a positive effect. The person who feels sexually diminished and resorts to prostitutes, as SCI patients are prone to do, winds up feeling lower than ever, and possibly with a venereal disease, such as Hepatitis C, chlamydia, AIDS, or HPV.
You had better respect yourself. It is for sure that society will not respect you. They don’t even know you exist. Watch your actions carefully, to make sure you are not headed over Donner Pass, to try to be what you once were, or accepting a cheap subsitute which makes matters worse. The person who finds little satisfaction in life may attempt to drown sorrows in booze or drugs, but these things make the whole matter worse. Far better to lower the expectations and look for simpler, more humble things to enjoy. You need pleasure to fight pain, but the pleasure should not be laced with a bitter aftertaste. When someone attempts to go across Donner Pass, there will be tragic consequences.
This is not to say that CP is not itself a guaranteed tragedy, but to emphasize that adding one tragedy to another is not going to work. Sometimes, avoiding squalor is a very admirable pursuit, and and accomplishment enough for someone in terrible pain. The loss of human dignity is a self perpetuating fall, and can happen in suprisingly short time. Society will not tell say that you are doing well, but internally, there is no choice but to manage the creature inside.
The realigning of life IS overwhelming. We are just figuring out life, and an injury suddenly happens which throws everything out the window. Pain paralyzes thought. We lose our way. Tragedy results. All that can be done, is to REMEMBER the lessons of ordinary life, that honesty, consideration, and essential virtues make sense, AND that we probably cannot wear normal clothing, probably need careful attention to the ambient temperature and probably must be satisfied with basic needs in the poverty that is likely to ensue. Try to arrange financial affairs first, after lowering expectations, and then other things can be addressed.
Relationshiops with family are former friends may have little in common. We may enter an existence where there is a powerful sense of isolation. Having absorbed all that, which is huge, the facts of life do not change. We have to hang on to fundamental virtues and abandon all unessential expenditures of energy and any neurotic need to look good in the eyes of othes. (neurotic only because this is impossible in CP–it is not abnormal in normals) If you do not gain a sense of yourself as a person apart, central pain will destroy you. We will have to learn to take pleasure where we never looked before, but if we look somewhere that is destructive, it does not become constructive for us, even if we have central pain.
We must never judge ourselves by the standards of normal people. However, we must not forget what they have learned, as we attempt to understand the new reality which has been thrust upon us. Shortcuts usually wind up hurting us, and doing no good to others.
Coping strategies tend to become obvious in time, to the person in pain. The problem is when we try to merge our reality with the expectations of others. Diplomatic communication with significant others is essential, although very difficult. Cheap substitutes for pleasure should be avoided in place of novel sources of real pleasure. Don’t take shortcuts across Donner’s Pass. Instead, realize that the trip is going to take longer than expected, and we may have to alter our expected place of residence. Hunker down for the winter near civiiization, and take your time.