dejerine
05-13-2004, 06:18 AM
Some of this is a copy of what I borrowed from an article, and is copyrighted, but I have permission from the editor to place it here, for use in this forum only.
"Many years ago, when I first located and began to communicate with others with CP, I was not shocked. They were desperate and very authentic. Their actions seemed consistent with what I knew about CP.
One lady was an artist. Her story was that she had had it all. She was a successful artist, very succesful. She sold her art to expensive, fashionable art stores and people ate it up. She was very rich and devastatingly beautiful, and had her way with men. She said they "worshipped her".
Then came an accident, and with recovery, CP. She could hardly wear clothing. So penetrating was the pain that she had no beauty to paint. She painted people whose skin had been flayed off (symbolic of her agony), the beauty of their bodies rendered grotesque simply by removal of skin from the elaborate muscle structure beneath. She thought simple removal of skin was not as terrible as skin becoming an instrument of torment. But no one would buy her paintings. She told a message NO ONE wanted to hear.
She tried to paint beauty again, but literally could not. Despite her physical beauty men began to shrink from her as they had no desire to listen about her pain. I met her when she was in her late twenties.
In the direct way of the drowning and the desperate, her sole interest was in knowing what I had found that helped. She talked to me only long enough to realize I was no better off than her. Would I have been better to have feigned ignorance, so she would not have put any weight in my communication that I had not found anything?
She was still very wealthy, even at her young age. Concluding there was nothing for her pain, she sold all she had, bought a large spread in Texas, and said in her last email that she intended to live there without clothing because the agony from it was too great.
She apologized, but said even the effort to write to me was too great, and that she planned to live in total isolation, having no guests, having food brought in infrequently, and making as little contact with the human race as possible. No more devastation of men. No more painful communication with others.
This did not seem odd to me. I understood perfectly. It did not seem irrational, but merely an adaptation to her illness. No one buys my paintings either.
This last week, I had to go to the doctor, a vastly good man. I have long ago learned that absolutely no one can relate to what my CP is like. Although I cannot describe it, even the approach to a description renders them awkward, uneasy, startled, and in disbelief. And so, I was under necessity of minimizing the terrible into the trivial, to make small talk. In this fashion, the doctor would help me. If I eased his pain, he would ease mine.
In my recent visit, the doctor began by saying, "Well, how's it going. I won't tell the bad guys (insurers) if you are doing well." The irony was that the pain was so severe that day, I could hardly bear to go to his office. And so we have this distance from everyone. If we attempt to express what we cannot, they withdraw. If we fake normality, they have no imagination and miss what is going on."
This forum is obviously therapeutic, but frankly I feel isolated when I hear people speak of a response to therapy.
After exhausting all money and emptying out life's savings, after undergoing massive surgeries which had their own impact, my CP was absolutely no better, and I had only postsurgical problems for my effort. The profound burning is still my companion. It is an undefeatable foe. Now that Iadarola has found something to kill C fibers, there may be something to attack the evil within me.
CP varies widely, but because it does, to allow for those who respond to nothing, we must speak of it in its lowest common denominator, as it feels to the lowest of the low. If we do not, we may be like my doctor. Inclining toward seeing civility as evidence of normality. A man going to the gallows may nevertheless say something profound, but he is still in a bad way.
Our imagination must read between the lines and hear what is being said. Those who feel least able to communicate probably have the most to say. There have been some powerful statements here, some heartwrenching words, but they are worthwhile whether or not they contain information on some new cure, or expose the worthlessness of some proposed therapy.
A wild goose chase after remedies which do not exist is not helpful. If meds help someone, "praise the Maker", but if the CP has settled in unabated to do its work of destruction, any communication may be a major effort and worth hearing, even if it negates some idea of a cure.
I have seen support for the lowest here. May it continue. We of all people must realize there are those worse off than us. Our imagination must not be cramped. Each person posting must be given full attention, especially for what they do not or cannot say, out of lack of words or out of their consideration for our feelings. They have learned others cannot hear much, but perhaps they want us to hear what they say, without their actually speaking the words. They want us to take on an attribute of the divine, and it does us no harm to try.
[This message was edited by dejerine on 05-13-04 at 01:26 PM.]
"Many years ago, when I first located and began to communicate with others with CP, I was not shocked. They were desperate and very authentic. Their actions seemed consistent with what I knew about CP.
One lady was an artist. Her story was that she had had it all. She was a successful artist, very succesful. She sold her art to expensive, fashionable art stores and people ate it up. She was very rich and devastatingly beautiful, and had her way with men. She said they "worshipped her".
Then came an accident, and with recovery, CP. She could hardly wear clothing. So penetrating was the pain that she had no beauty to paint. She painted people whose skin had been flayed off (symbolic of her agony), the beauty of their bodies rendered grotesque simply by removal of skin from the elaborate muscle structure beneath. She thought simple removal of skin was not as terrible as skin becoming an instrument of torment. But no one would buy her paintings. She told a message NO ONE wanted to hear.
She tried to paint beauty again, but literally could not. Despite her physical beauty men began to shrink from her as they had no desire to listen about her pain. I met her when she was in her late twenties.
In the direct way of the drowning and the desperate, her sole interest was in knowing what I had found that helped. She talked to me only long enough to realize I was no better off than her. Would I have been better to have feigned ignorance, so she would not have put any weight in my communication that I had not found anything?
She was still very wealthy, even at her young age. Concluding there was nothing for her pain, she sold all she had, bought a large spread in Texas, and said in her last email that she intended to live there without clothing because the agony from it was too great.
She apologized, but said even the effort to write to me was too great, and that she planned to live in total isolation, having no guests, having food brought in infrequently, and making as little contact with the human race as possible. No more devastation of men. No more painful communication with others.
This did not seem odd to me. I understood perfectly. It did not seem irrational, but merely an adaptation to her illness. No one buys my paintings either.
This last week, I had to go to the doctor, a vastly good man. I have long ago learned that absolutely no one can relate to what my CP is like. Although I cannot describe it, even the approach to a description renders them awkward, uneasy, startled, and in disbelief. And so, I was under necessity of minimizing the terrible into the trivial, to make small talk. In this fashion, the doctor would help me. If I eased his pain, he would ease mine.
In my recent visit, the doctor began by saying, "Well, how's it going. I won't tell the bad guys (insurers) if you are doing well." The irony was that the pain was so severe that day, I could hardly bear to go to his office. And so we have this distance from everyone. If we attempt to express what we cannot, they withdraw. If we fake normality, they have no imagination and miss what is going on."
This forum is obviously therapeutic, but frankly I feel isolated when I hear people speak of a response to therapy.
After exhausting all money and emptying out life's savings, after undergoing massive surgeries which had their own impact, my CP was absolutely no better, and I had only postsurgical problems for my effort. The profound burning is still my companion. It is an undefeatable foe. Now that Iadarola has found something to kill C fibers, there may be something to attack the evil within me.
CP varies widely, but because it does, to allow for those who respond to nothing, we must speak of it in its lowest common denominator, as it feels to the lowest of the low. If we do not, we may be like my doctor. Inclining toward seeing civility as evidence of normality. A man going to the gallows may nevertheless say something profound, but he is still in a bad way.
Our imagination must read between the lines and hear what is being said. Those who feel least able to communicate probably have the most to say. There have been some powerful statements here, some heartwrenching words, but they are worthwhile whether or not they contain information on some new cure, or expose the worthlessness of some proposed therapy.
A wild goose chase after remedies which do not exist is not helpful. If meds help someone, "praise the Maker", but if the CP has settled in unabated to do its work of destruction, any communication may be a major effort and worth hearing, even if it negates some idea of a cure.
I have seen support for the lowest here. May it continue. We of all people must realize there are those worse off than us. Our imagination must not be cramped. Each person posting must be given full attention, especially for what they do not or cannot say, out of lack of words or out of their consideration for our feelings. They have learned others cannot hear much, but perhaps they want us to hear what they say, without their actually speaking the words. They want us to take on an attribute of the divine, and it does us no harm to try.
[This message was edited by dejerine on 05-13-04 at 01:26 PM.]