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.

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Saturday, August 20, 2011

What is 'brave'?

"You are so brave." someone says, a stranger or even a friend or loved one as they learn what you have or are going through.

Are you brave because you fight the pain? Is your 'courage' in the struggle to get through each day or in going through procedure and treatment after procedure and treatmant?

I read what so many have to say about their experience of living with chronic pain. From many of them, from their stories, I think the bravery is in saying "I can't", "today the pain is bad." "I will try despite the pain." Sometimes it takes courage to say the truth.

I know that I am not the only person with pain who has been ridiculed and criticized for saying "I can't"

One sister said to me "I don't understand why you don't volunteer at least." If I could do volunteer work, I could do paid work. And I want to do paid work. It would give me a place to go, people to see, things to do. And a paycheck. It would give me a sense of purpose.

Actually I do volunteer. Once every 2 - 3 weeks I take food to an elderly woman. Although I am only required to leave the food and leave, I stay for an hour or so. We share confidences. We have a relationship, even when she introduces me to people as "the lady who brings me food."

I love doing it, and yet I often cringe when I know today is the day. It is just picking up meals at a church and schmoozing. How bad is that?

Sometimes pretty bad.

I use my eyes to pick out the foods I want to take her. Then I use my eyes when I talk with her, especially because sometimes she is a handtalker. The movement of the hands sets off the eyepain. Sitting with her is usually a codeine time. One lady, one hour, one codeine.

I do not tell her: I tell no one that this is hard for me. Sitting with someone and talking. Ah, come on... Who would believe it? Often even I do not believe it.

Am I brave because I do it? Am I brave because the fight continues minute by minute, hour by hour, day by day? Am I brave because I stay home knowing that a simple trip just to the store, using my eyes to look at the items, will cause the pain?

Often I see it as a coward's act. Just bite the bullet, for crying out loud. It is a trip to the store or to see Angie, or to go to church or sing in the choir. Your life is so empty and lonely only because of your fear. Everything is colored by the worry. What if (whatever I try to do) makes the pain so bad I have to be overdosed, in pain and narcotic headed?

I think about trying to volunteer, something like being a 'pink lady' in a hospital. I used to be a candystripper, a gazillion years ago, way before the pain. This would be taking water or flowers to patient rooms. That means reading, looking for the room number, talking to the patient. Could I do that? Would they let me work for only an hour? And would I be even more discouraged if I found out something even that simple was beyond me?

Is it cowardice to let the fear of the pain and the fear of failure because of the pain take control?

Is it bravery, or foolhardiness, to try?

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