The pressure to be normal is considerable. It is the pressure of society and man is a social animal. Central Pain can make big problems for what should be small steps. Here are some ideas to help you avoid making social interchanges a big problem.
One of the most profoundly moving experiences was to hear Dr. Patrick Wall say to a patient with Central Pain, “I am sorry”. Dr. Wall had spent his entire life treating pain, and he had approached it as near as one can who does not have nerve injury pain. In some ways, he sensed more about the patient than the patient did about himself/herself. The finest actor on earth could not have said “I am sorry” any more meaningfully than did Dr. Wall. He said it with his face, his features, his shoulders, his body, and his heart. He meant it so sincerely that he had labored all through life to try to find a solution to the pain states. This concern came through in his voice and his eyes. He was a healer.
Dr. John Bonica had a similar gift, the product of a life of pain in himself. The understanding possessed these two great physicians was not far from that of the angels. The knowledge was not a burden for them, it was an opportunity to relieve suffering. Such understanding is not the nature of daily interchanges. We must not require those around us to be extraordinary, just as we hope they will not require us to be normal.
“How are you today?”
“You are looking good. You must be feeling better.”
“How are you feeling?”
“Are you feeling any better?”
These harmless greetings stick in the mind, the heart, and the speech center of the CP sufferer, lodging in them with such force that they may feel as is they have been throttled or slapped. How can these salutations be so difficult. Strangely, it is the implication of normality which such greetings carry. The majority of people in wheelchairs aspire to be regarded as normal. The special Olymptics and other activities are designed to help people feel normal. The public responds to this context, and believes that any wheelchair party would want to be afforded this courtesy.
Severe pain turns things around. It takes over the psyche, and being normal requires that one must regain it. This is not possible with severe pain. The public lacks imagination where pain is concerned. One cannot be normal in severe pain, any more than one can be normal when severely drunk. Something else is controlling things. Heavily sedating medications help this process along. One just doesn’t want to have to explain once again that CP is completely outside the ordinary human experience, and that they themselves cannot run in the tracks of life where normals tred.
The CP person rejects postures which will require them to be normal. They cannot be, and do not wish to fail at trying, as they surely must. Being normal carries with it energies, hopes and ambitions which they have had to forfeit in favor of survival. They don’t mind strangers as much as old acquaintances, who see the face and think they recognize them. How can they conform to the expectations raised by the race of the person they no longer are. The new person, if exposed, will surely be a letdown.
“How am I? I wouldn’t recognize myself now if I saw me, and this person here is in disabling pain. This person was chased into the day by a series of ghastly burnings during the night and will be chased into night by exhaustion and burning, cramping muscles. How are you?” So much for authentic answers.
Much of what confronts CP subjects in public is the demand that everyone faces to be as normal as possible. When departures from normal are common, the standard is relaxed in that particular area. Tolerance tends to be in direct proportion to the number which deviate from normal.
Certain norms make sense to an ordered society, but others are mere conventions. The idea of normality promotes order but the many science fiction pieces of robotic machinery which begin to execute humans who are not