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My book.
"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.

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Friday, March 18, 2011


I was at choir rehearsal the other night. It is very hard for me to be there. Reading music is the one thing I know for sure is pain producing. As I write that sentence my stomach clutches. I do not like to talk about my pain, I do not like to admit I have the pain or that I cannot do something. During the day I can control my eye usage. If I am here, at home, I can stop before the pain gets bad and yet...I still, even after 30 years, tell myself 'just a little bit more' and then I am in trouble. It takes longer to get over the pain and requires the codeine. Rehearsal lasts about an hour or a little more. I take half a tablet of the codeine when I am at home, if I need it at all. No eye usage or a little I can get away without any.
Choir rehearsal, though, is a full tablet within one hour. The eye pain is bad, very bad, within a few minutes of constant eye usage. My lids swell as the face moves when I sing. The paralysis has made the left side of my face very tight and that aggravates everything painful and discomforting. My mouth gets dry and I get a codeine headache. That makes it harder to sing, harder to pay attention. I have the reputation of being 'scattered'. True, I am not the most organized person but at church, during services when we sing, I take more codeine; I become scattered as the codeine fuzzies up my mind.
One or two people know about the pain but no one else. I sometimes wonder - should I tell them if it seems like the right time? I do not know. Is it worth it? The person I do tell seems like it is of no concern other than for the moment. They are all nice people but telling still seems like a risk.

The last church I was in the choir was maybe 12 people. Instead of rows we sit around a table.
At that time my pain was much worse and I was on a lot of medication, sometimes up to 5 codeine in an hour.
I was so happy to finally be a part of something. But, it had been so long since I was (without family or work I lost a lot of the idea of how the world and supportive people behave.) it never occurred to me to say anything. I did not want to be seen as different. (Of course the facial paralysis immediately made ad makes me different but I always keep my fingers crossed it will be ignored.)
My pain behavior is to withdraw. Normally talkative, people can tell you, sometimes very, very talkative, I shut down, sometimes completely.It was the 4th or 5th rehearsal when another member looked at me, concern in her eyes. "Did we do something to offend you? You seem really angry with us. "I had no idea that was how it might look to someone. I had no choice, I had to explain. And it, and I, was accepted immediately. (Later things changed but that is another story.)I think the bottom line is I am not sure when to disclose or to whom. I fear people will either say 'so what' or care too much. I fear giving them the chance to do either.My family has been awful about the pain. Nasty things have been said, not one of my siblings was there for any of my 12 brain surgeries. I was badmouthed to their friends and worse still to their children.My parents were not much better. If I said "My face hurts" when the pain was bad my mother often responded "Well, it's killing me." My father insisted it was psychological even after it was verified from surgery and my neuroophthalmologist showed him the texts and drew diagrams.I learned my lesson well. Keep your mouth shut. Don't admit to the pain. Don't say "I can't" or 'can you close the window so the breeze doesn't hit my face' or 'Could you blow out the candle because the movement of the flame hurts my eye'.The funny thing is I actually seem to look better when the pain is bad. For some reason the left eye is usually slightly closed, the lids very swollen. When the pain is bad though the eye seems to open wider (maybe in surprise?) and people say "You look really good, you must be feeling well." I smile in frustration. "Yes. Thank you." Should I say well no, actually I am in a lot of pain now? They are being nice. Is it right to set them straight so they feel bad and feel they said the wrong thing. Does it make me feel any better?I realize I am writing in free fall, saying more than I intended. Maybe after 30 + years it is time to come clean, to open up, to say what I have kept hidden all this time.Maybe the time is now to open up about the pain. Maybe that is the way to learn to accept it. Hiding is an interesting thing. It keeps the pain and my feelings locked up inside me but it also locks out the people who want to be let in.

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