Writing About Pain

Since CP patients are not particularly good at speaking about the pain, and tend to rely on vocabulary that will not get the job done, we asked some contributors what it had been like to write about CP

“Writing about pain is like writing a love letter. It is all about emotion. And when you go back and read it, it is crap.”

“Okay, what is it like to write about a condition for which there is no vocabulary. What do you think it is like. Impossible work, but someone has got to do it.”

“It is like writing for reptiles. Central Pain people, at least the ones we try to remember, the severe cases, are too sick to respond. So you wind up forever wondering if what you labored to write did any good for the people it is supposed to reach.”

“Here is what it is like. Take material that is too complicated for a PhD in chemistry and attempt to put it in words for the layman who is burning out of his skull, and can’t remember what he already knows.”

“CP people are having an experience. It is so big that they cannot comprehend what is happening to them. I try to put CP into outline form, so the sufferer can try to see a little structure. If they do, then they inform their doctor, who sometimes passes the information along to a PhD, who may or may not be motivated enough to go out and do something. I write to the one person who just might need the information, hoping it may plant some seeds to justify the work of composition.”

“Painonline is all volunteer. There is absolutely no group more admiring of doctors who treat pain, but sometimes we have to be free to criticize certain fractions of the medical profession, fractions who are still embedded in the past and refuse to acknowledge the magnitude of nerve injury pain. This means we sometimes have to get into a fight with people we love. That is what it is like to write about Central Pain.”

“The toughest part for me is knowing how sick some of these people are. The sickest ones may not even be able to get on the internet. Do I aim at them, hoping someone will print it off and give it to them, or do I aim at the person for whom it is not so bad, but still has pain that deserves to be acknowledged.”

“CP sufferers are like drowning victims. If you try to reach out and help one of them, the person next to them cries out in sorrow for the fact that the little bit of attention did not come their way. It is like having one baby bottle and going into an orphanage full of starving infants.”

“There are illnesses which enjoy public favor and those which do not. Pain has no privilege. You know what it is like watching TV series about Victorian people riding and strolling about in gorgeous clothing, who were landed gentry or royalty. They live pampered lives, pretending to struggle, while those who are really in bad shape can only sit back and watch. I write to those who watch.”

“Writing about it is nothing, compared to having it”

“To know even one life has breathed easier because you have lived. This is the meaning of success.”–Ralph Waldo Emerson