My book.

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

Total Pageviews


Friday, December 23, 2011


I wanted to just be positive here, before the holiday, but as I thought about it those of us in pain often have this hurtful (in many ways) quandry.

Christmas Eve is our candlelight service at Church. The choir will be singing a number of songs. We will also be doing a little 'choreography', fanning out along the side aisles to help light the candles of the congregation.

Candles and I are not friends. The flickering hurts my left eye, the movement sets off the pain. The turning on and off of the lights are also a source of pain as the eye reacts to the light, dark, light again.

Using the eye to read the music, the opening of my mouth to sing pulling on the whole side of my face (because of the tightness from the paralysis), even the walking, watching where I am moving, a use of the eye rarely considered. These all have one result. Pain.

I take the codeine more often now that the stimulator is not working. To go the service will mean a lot of codeine. A lot of feeling cloudy, a little slowing of my responses, and worse for singing, a mouth as dry as a bale of cotton.

I want to do this service. It is, essentially, my Christmas.

I sent a few gifts off in the mail but I have noone here, in front of me, to gift or to gift me, or to eat breakfast or dinner with. That is nothing new anymore. I have somewhat come to acceptance with that. Christmas has a bigger meaning, if you are Christian, and I try to keep to that notion. It helps, a lot.

But I miss the beauty of Christmas and a big part of that is the candlelight service. All of us with chronic pain have the situation when the question becomes gigantic. Can I do (thus and so)? I want to, I look forward to it, it is a major event for me. But can I do it? Can I stand the increased pain I know it will cause? Will the pain interfere to where it takes me to the edge of the tolerable level of pain? Will the drug ruin it for me anyway?

I want to do this service. Badly. This is one of the times where the question has to be asked.

Does the pain make my decision or do I overrule the pain and accept the repercussions?

Tuesday, December 20, 2011


I sang a solo last weekend at our annual women's Christmas Tea.

The choir director picked I WONDER AS I WANDER.

I have always had stage fright. I hoped that it would not effect me as much this time.

As they say, those who can do, those who can't teach.

I have taught a few people ways to get over their performance fears.

"Bend your knees slightly. It relaxes your body as you sing.", usually my first instruction to my students. A tiny thing but a gigantic payoff. Other suggestions were similar. "Let your shoulders fall naturally. Don't hold them up to your ears." And so on.

I did not remember to do any of it. David, the choir director, spent a lot of time helping me to prepare, telling me, "bemd your knees. Relax your body." I laughed. "Oh boy I teach others to do it but I completely forgot about it." I bent my knees, lowered my shoulders, opened my fists. It helped. A lot.

I practiced at home. I visualized the room. I imagined the people. This would be different for me; the first time I would be able to see right into the faces of my audience.

My hope for my life had been to do just this; a cabaret moment. Telling a story to an audience through song. I wondered as I wandered. And this is what I thought about. This was my chance to do what I expected to do with my life.

I stood before the audience. I felt okay, no shakes. David played the piano introduction. The first word came out of my mouth. Immediately my body started shaking, my voice warbled.

The more I thought,Okay, calm down, these people are your friends, people you know, and you know the song. Enjoy it. the more I shook.

I continued to sing. I hit my notes. I felt I got some of the story out the way I meant to, emphasizing some worda and ideas, deemphasizing others.
I wondered though. How bad did it sound to them? How bad did it look?

"You were wonderful." they said. Nice, but these were nice people.

"How bad was it? How scared did I seem and sound?", I asked someone I trusted to answer honestly.

"Scared?" Martha looked at me with surprise. "You looked so calm and comfortable. I was amazed how relaxed you seemed."

It is funny how people's perception is so different from what we feel, or even what is really happening.

I love telling this story:

When I was in dinner theater we did CAROUSEL. Instead of an orchestra the producers decided to use a tape for the music.

It was the finale, the song When You Walk Through A Storm. It was a heavyduty moment, the memorial service for the character Billy Bigelow. We stood and the music did not start. We continued to stand, waiting. Nothing. The lead started to sing, in the wrong key. Some tried to join in but it was pretty bad. And then the music started. At the beginning. We started anew. And then the tape stopped. We started to sing. And then it stopped. We stopped. It started again. We started again. And this time got through the song. It was a debacle. So embarrassing.

And I cannot tell you how many people later came up to us and said "The finale was so moving. The most emotional of any CAROUSEL I have seen."


What you see and what they get. What you feel, what they get from it.


Tuesday, December 13, 2011


It is the holiday season. Commericals and advertisements everywhere. Give. Give a gift. Give. Make a donation. Give. Of your time.

What about us, those in chronic intractable pain? I think we have a different give agenda and history.

The first two 'gives' are almost antithetical; to give in or to give up.

I decide, for me, to read or write, even this post. The pain gets really bad. Do I give up? Stop what I am doing? Get so angry/depressed that I decide no more blog. No more books, It is not even worth the try anymore. The pain is my life.

For those with body pain - do I not get out of bed, tie my shoes, make lunch, for many who are still able to work, resign or quit? Ohhh. Resign. That is a perfect word.

Give up. The pain is stronger then I am. Resign to the fate of the pain.

I do not have to.

I could give in instead. Surrender to the needs of the pain. Take the medication(s). Accept the sensations of narcotic. Stop all activity. Rest. My body, or for me, my eye. Let it be my life. Until I have recuperated enough to start up again. That does not always feel good. It helps the pain but still feels a surrender, a capitulation. Captivity to the pain.

And then the third 'Give".

Give myself the freedom to accept the pain as a part of my life, but not my life.

Give myself permission to do what I need to to incorporate the reality of pain into my day, into my life.

Give myself the pat on the back. "I can do it."

It is funny. So many people in pain tell me stories about friends, colleagues, family, mocking their pain, disbelieving it, refusing to hear the cry of "I can't" or "Help me."

In my own life and in theirs, it is rare, sometimes never, to hear the positive "Good for you. You succeed in having a life in spite of pain. You soldier on and do what you need to to not let the pain take you down." So few, if ever, "I am proud of you, of the fight you make to get through each day, of doing what you need to do to live."

This is my give to you.

I am proud of you. You put so much effort into living with the pain and getting past it so that you have a life. You agree to try things that most people would not agree to in order to try and help or even stop the pain. Your fight, our fight, is a hard one, one that those who fall into a chair and moan when the hammer hits their thumb, could never imagine.

Give. To yourself. All of the kudos and back pats, those that have not come and those that you have not given yourself. You deserve it.

Tuesday, December 6, 2011


Prophylaxis - just in case.

I keep the stimulator on at the lowest level - timed to come on 1 minute every 1 1/2 hours, but just in case they can replace it, or better yet fix it, I will keep it on, even though it has stopped helping. The pain is coming sooner, the eye time for reading or just using my eye in general is getting shorter and shorter before the pain kicks in.

I hate taking the codeine. Even after all these years it still feels like a sign of weakness.

Now I have to make a choice. Do I keep fighting the pain and fighting doing something about it? That tactic is no good. Not unless I want to take to my bed, just me and the 13" TV. But even then a show where the colors are very bright or there is a lot of moving about, the pain invites itself in.

I have choir and chorus at church. Christmas is coming, more music then usual, longer rehearsal time, more to sing during the service. What choice do I have?

The codeine has never helped. Well, almost never. When the pain was at its worst I sometimes took 3, 4, onoe memorial day, 5 grains - 5 tablets - in an hour. The prescribed dosage is 1 pill every 4 hours. The pain stayed but the pills made me feel like I was encased in gauze, the pain outside of me. The downside is it took 5 pills to do that.

So I decide maybe I will take it prophylactically. I have been doing that somewhat even before the stimulator stopped helping. Instead of waiting to get to rehearsal I would take half a codeine on my way there. I would always need at least one more while we were singing, and reading the music scores, but at least I was maybe a half an hour ahead of the game. No, not really. As long as the pain rose to a higher level what was the point of taking it before I got there?

Here is an idea. Think about it. What if, instead, I take it an hour before I get there? The maximum point of impact is 2 - 3 hours, an hour to 'hit' and an hour to wear off - so my thinking goes.

I dp that. And find my mouth is so dry I can barely sing. Plus I still need more while at rehearsal or during the service.

I have not figured out what to do. The prophylactic pill seems to make the most sense but makes me feel worse; cloudy, tired, and cotton mouthed.
To wait and let the pain get there first is non-sensical.

I kind of hoped writing this would give me the answer. Instead I gulp another codeine while writing this post.

What is the equation of pill to pain and when? Boy. I wish for all of us I had the answer.