Subtraction cannot equal addition. At least in life, this is true. People, especially children, do not operate like negative numbers. There is no double negative to make a positive. Pain takes away, and the reduction is accomplished. Children know they were cheated and who better to take out the anger or hatred on than the stymied parent.
We can only say to those who are presently unimpressed and largely hostile to parents in pain, “What could YOU do if you were in severe pain?” They do not feel the need to answer this question, since pain is invisible. The eye gives them a pass on the need to help.
One of the annoying responses pain patients often get is some comment about how “lucky” they are. No matter what the symptom, no matter what the difficulty, the majority of observers will attempt to point out why such and such a thing is somehow “lucky”. It is what we call “treatment by jingoism”. Of course, they speak it in tones of sainthood, but somehow we doubt the hagiographical status of this bunch of Job’s Comforters.
The thoughtless and automatic verbal alchemy by which they convert our status to their own with regard to pain only shows how stupid the public is about the power of pain. They think some trip to the dentist, or an earache in the distant past, or other minor brush with pain somehow qualifies them as an expert on this point. Of course, central pain is another thing entirely. It is a nervous system which can only feel pain. That bears some reflection. It also bears study of what can be done to help children caught up in the problem. This study has never been done, but it seems strange that it has not occurred to the experts that severe pain creates as many or more problems than death.
The severely retarded, markedly autistic or schizophrenic child creates a vastly greater amount of work and expense for the family than one who dies. They can become an emotional black hole, so that other healthy children are neglected and thereby become unhealthy emotionally. Surely it is not so much a stretch of the imagination to realize that a parent in unendurable pain has much the same effect on those around them. An autistic child may be assigned a teacher, one on one, to learn modest skills. This is paid for by the government. A Down’s Syndrome child may be provided a helper at taxpayer expense. However, when it comes to the agony of severe pain in a parent, there will be no assistance for any child of his. We wonder, why not?
The sad thing about children is that they are living organisms. As such, they obey the laws of biology, including all the psychological stuff. Nature is packed full of rules, and so far no one seems to have been able to violate them successfully. Consequence follows behavior almost inexorably. If the human being needs water to survive, no extra amount of substitute minerals, calories etc. can get the job done. Things are what they are, no matter how much we wish it were otherwise. The child neglected goes into slow shock. We wish there were some way to support them as they grow through this, to fend off the “slings and arrows of outrageous fortune”.
Spinal cord injury always spills over into the lives of the family. For those who had children prior to the accident or illness, whether or not they would have chosen the responsibility of offspring, knowing they would be disabled, the debate is irrelevant. They are here, we are here, and unless the child decides to parent itself successfully, we are not going to get lucky. Children need love, attention, admiration, praise, and they also need to know what “no” means.
Something like 75% of all boys raised by young single mothers acquire a criminal record. Many of these mothers are such good people that they are nearly ready to become angels, but they often must nevertheless endure the grief of drugs, promiscuity, teen pregnancy, violence, or criminality which seem ready to scoop up undisciplined boys and needy girls like sardines in a net. There are exceptions, of course, but they are the exceptions.
It is all well and good to point to the one outstanding youth who came from the ghetto, the child of uneducated parents, with gangs roaming outside the door, who found his way into youth basketball, college, and medical school. But this child is the exception. The power of social probabilities is too great. Most of the children from the neighborhood missed a good education, and will live dysfunctional lives, and their parents will suffer along with them, as adults as they did when the child was young.
A child needs each and every thing which he or she needs. Generally they need good friends who are a positive influence. They need to understand that certain things are for adulthood, when there is a proper frame of reference and some degree of judgment. If any one thing that the child needs is omitted, it becomes a wedge which splits the child as he grows. Sooner or later, the missing part is exposed, and the gap created by the parent’s failure becomes obvious as an oozing sore, a fatal defect, which may ruin the child’s life.
The drunken driver, the careless brake mechanic, the errant surgeon, or whoever creates a disabled parent, has created a situation with a social probability for a failed family. It would be possible for society to recognize what the disabled person cannot do, but society really has no clue on this matter. It might offer weekly counseling to the children, information on how to relate to a disabled parent, and corresponding instruction to the parent on children. None of this happens, of course. Too often, the SCI parent must rely on luck.
When Central Pain makes the situation so much more serious, the odds against a well adjusted family increase exponentially. We hear stories of and occasionally actually witness a spouse so supportive and determined that they are able to fill in the gap, but this is not an increase in ability of the disabled. It merely points to the need for someone else to help, to assist, to step in where children are concerned.
What factor of life is the CP parent unable to supply to the child? What is the missing ingredient? To answer this question, we might start by asking what does the CP parent lack. Not to sound whiney, but people in pain lack happiness. They may have varying measures of joy, but no one in severe pain has happiness. Chronic severe pain sooner or later leads to a kind of numbness. The shock of the injury and the pain gets heavier with time, and in some way the buidling will collapse.
Another thing which pain does is preempt the mind’s attention. When the parent ought to be thinking about the child, he is actually grappling with terrible pain. The pain of the parent is transferred to the child, only in converted form. The lack of attention, which nearly always means lack of appropriate admiration can leave the child feeling confused and unvalued. The equation changes. The parent in pain is actually the needy child, and so the biological child gets shorted. Both feel disappointed. The adult may have reserves by which to proceed in a hellish survival game, but the growing child can never find the nourishment which they desire from a parent from any other source. They can seek substitutes, but mostly, they must do without.
Stunted personalities, moral failure, and disordered lives are not uncommon when the parent cannot pay attention, respond to successes and failures appropriately, and most seriously, cannot FEEL anything. If the severe CP patient COULD FEEL anything, it might be fatal. There is no defense to really agonizing pain. Medically, the doctors treat it with anticonvulsants to QUIET the central nervous system. Internally, the brain treats it the same way, but shutting off feeling. The brain is smart enough to know that a truly sentient human would be prone to bailing out, to ending life, if there were an expectation of the richness of ordinary life, however challenging or crummy.
A parent who cannot feel is not all the parent the child needs. Society, which often steps in when there is an obvious need, misses this point. No counselor will show up and knock at the door, announcing an intention to be a surrogate for what the real parent cannot do. There is only the hope of a helpful spouse. Everything pretty much hangs on this. But the incentive to help the injured often cannot be maintained without feedback. The same mother who may nourish the comatose child, the grossly retarded child, for years without complaint cannot do the same for a husband in pain. Things simply do not work this way. The perception needed is lacking. Here again, society could do much, could inform the spouse, could legitimize the illness, could reward effort, but none of this ever happens. What contact does occur generally is centered on how pain is “psychological”, how “Job endured infinitely greater suffering”(how would they know?) and how shameful it is for anyone not to be a productive member of society. Which society? The society which excludes disablity for severe pain of course. Only in this society would neglect of the consequences of severe pain on families occur.
It is very much an uphill battle. Casualties, painful to watch, are almost inevitable. Marriages fail, and even when they do not, families may fail. Even though there is no satisfactory treatment for severe burning dysesthetic pain, there are many things society COULD do for the children of CP parents, IF society knew anything about CP. Society will not “cut you any slack”, but they will offer their contempt for your “weakness” and “failure to function” over MERE pain. Presently, no social service agency would even consider helping out, when the “problem” is popularly held to be psychological, self induced, and shameful. The person with severe CP is wise to go into nonfeeling mode. The problem is that this is impossible to accomplish with regard to children. It is most painful to watch them fail, struggle, and fail more severely, knowing that they were deprived needed parenting.
The research on curing central pain is encouraging. The failure of societal organizations, churches, communities, and neighbors to recognize what is going on in homes where a parent has terrible pain will not changes unless widespread education begins. We not only need to include instruction on pain in medical schools. We need to include it in the training of social workers, child psychologists, and marriage counselors. Right now, the world is upside down on this. We still see marriage counselors admonishing the noncontributing parent, even as the person sits numbly, unable to feel, and therefore able to go on living.
To the CP parent, we say, repeatedly emphasize to your spouse the need for cooperation. The ordinary family may get away with much that the disabled family cannot. There must be extreme effort to create harmony, cheerfulness, and positive attention for children. If the healthy spouse cannot see this and respond, then in the end, not only will the family pay, but society will pay as well. Sorrow and tragedy are not normal. They need a remedy. When someone commits a tragic act, such as a school shooting, the school counselors recognize the potential for shock, for disorientation, and emotional stress. Nowhere in any book, in any classroom, or in any course of education is there ANY training on how to deal with severe PAIN in the home. We think it is time for this to change.