To have CP is to have to listen to amateur neurologists, who hear the vocabulary and translate every word into the familiar. You would think the entire world has central pain. Not hardly. If it did, the world would stop functioning. Claiming empathy, without actually having any, makes the whole situation worse.
One of the really annoying aspects of the muscle component of this author’s central pain is the false sense of muscle contraction and cramp, which attaches to abnormal posture. Let me lean over to reach for something and the muscles on the chest or arm go into an agonizing cramp sensation. Similarly, my toes, fingers, and muscles have this irritating and painful habit of ACTUALLY going into spastic cramp. Behind the thigh is a constant cramp of the most severe type. It has never left since CP arrived, not even for an instant. In a friend with CP, the sensation is in the chest wall. This never happened to me prior to the cord injury. However, attempts to describe this are shut off almost before they are out of my mouth. “I have that too. My toes do that too.”
I have been all around this world and have never seen anyone’s toes do that, except in the spine hospital I first entered and in my own home, in me. With diabetic neuropathy on the rise, it is not even possible to talk about the severe dysesthetic burning without being interrupted by someone who knows someone with DN, who unlike the person with severe skin dysesthesia, is still able to wear whatever clothing they choose, and to circulate freely.
With respect to diabetic neuropathy, I suspect their degree of burning, while painful, is nothing like severe dysesthesia. The worst case of peripheral neuropathy I have personally witnessed existed in someone whose nerve endings were damaged by total body irradiation and chemotherapy. He had lots of pain, but was mainly worried about the lymphoma. I also do not see those with diabetic neuropathy lining up outside Kevorkian’s office, as severe CP cases are known to do.
There are of course, those cases of RSD, or Complex Regional Pain Syndrome, who cannot tolerate clothing or temperature change, but these just illustrate in a localized area what central pain is like all over the body. None of them ever minimizes the dysesthesia of central pain, because they have nerve injury pain themselves in a peripheral nerve and cannot tolerate it and are awestruck that anyone would have it distributed generally. A little water gets my clothing wet, a lot of water drowns me. Those who fail to appreciate degree are not capable of achieving meaning.
Empathy. How do we define it? Supposedly, it is “to feel with” or to “relate to”. There has to be more, however. In genuine empathy, there also has to be a recognition that one is not able to relate, nor feel with, but cares anyway.
It is not empathetic for a person of a majority race to say to a person of minority race, “I know how you feel”. This negates empathy. The minority person is saying, “I am having negative experiences, which are unnecessary and burden life”. Empathy would be to say, “I acknowledge the truth of what you are saying and hope to be able to help or to at least listen to how you feel.”. Empathy’s first derailing comes when the listener assumes he already understands, before investigation has even begun. This kind of thing puts an end to empathy because it is basically calling the person who claims a unique experience a liar. We do not need this kind of empathy. We need even less the posing of anyone who attempts to drape themselves in the mantle of empathy by claiming to understand what they could not possibly understand unless they have lived it.
False empathy is as if a freshman walked into the university math building before taking any college courses and says, “I understand, so just go ahead and give me A grades in all these classes, so I can get on with something else”. The professors would never fall for this, and neither would those with central pain fall for anyone who says, “I understand”. What would be better would be for someone to say, “I don’t understand and I am troubled by that fact.” Real empathy is not concerned with who knows what. It is concerned with making room for the experiences and feelings of others.
The “I understand” fiction is similar to the “You look great” comment. For example, “I have severe unremitting central pain, with burning so severe that I have trouble wearing clothing or laying on the sheets at night.” Reply: “You look great”. Although couched in the words of a compliment, this heartless reply can be roughly translated into “You are a lying sack of horse excrement”. No wonder we hate to hear it.
Why do people feel comfortable saying this? What does how I look (actually, not very good) have to do with the levels of nerve growth factor in my nerve synapses? How do invisible pain exciting molecules relate to my inherited bone structure? In sum, “You look great” is just another way of telling us to “Shut up!”. If someone says their child just died, who would be dumb enough to say “You look great”? Unless OUR child also just happened to die, we should retreat from the inner circle of emotion, aware that there is some element of personal suffering, which we can acknowledge without claiming membership.
Those listening about pain not only claim membership, they appoint themselves officers in the organization! “You should do what I do for pain–have you tried morphine?” “Morphine. No. Here I have this very severe pain and the thought of trying morphine never, ever once occurred to me.” Or even worse, “Have you prayed about it?” “Yes, constantly, for a very long time. Now I am trying not to blaspheme or charge God foolishly”. We know we are not to cast pearls before swine, but it would appear we also are not to cast toxic pain exciters before angels.
In a recent article, we noted the struggle of Claudia Osborn to understand how her own brain was different after injury, in order that she might learn to deal with it. It is also interesting to note that as she began to identify and name the changes in her thought processes how friends, family, and nearly everyone else tried to cram it back down her own throat.
Following Claudia’s brain injury, she found subtle mental skills to be impaired. She described watching an egg roll toward the edge of a counter. She reached for it and forgot to hold onto the casserole dish, which had belonged to her grandmother. The friend who observed this said:
“We all break stuff, you know”
Claudia responded, “Yeah right, I really loved that dish”.
Friend: “If you think this is bad, you should have seen the mess when Jerry broke the bottle of barbeque sauce.”
What was missing was the realization that Claudia was coming to grips with the fact she would never be the same. Also, she had endured many accidents and would have to get used to enduring many more.
Another episode (Claudia Osborn was a doctor):
“Now, that you have gotten a real break from the field of medicine, you’ll probably never want to go back. All those long hours and stress.”
“I loved practicing medicine”.
“Well, you can still call yourself a doctor. That’s still more than most people”
It is just not empathetic to be told that our deficits are “not that bad”, especially the pain.
Claudia Osborn continues, “However, when my impaired reading skills leave me too confused to sort my mail, it doesn’t soothe my pain to record here that I am glad I am not in a coma” As Osborn says, false empathy “…adds insult to injury”.
This sort of thing is at least as prominent in central pain, where NOTHING seems better, including comas. As Schweitzer said, “Pain is a more terrible lord of mankind than death itself”.
The all time most common thing to be put in the face of incompletely injured SCI subjects with central pain is “You’re lucky. You could be paralyzed”. Would we accept full paralysis if we could never live another day in pain? In a heartbeat. Have these people forgotten what is meant by the word “pain”? EVERY central pain paralytic indicates that the pain is more disabling than the paralysis.
No, we want either real empathy or no empathy at all.
Take this syringe of capsaicin. Come into our upper level class of nerve injury pain. You will learn more than you ever wanted to know, just as we have. You will look great, but when the capsaicin hits, you could not care less about that.
