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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Monday, February 27, 2012



For many things I can be like a dog with a bone, fighting to hold on to what is mine or to get what I need. Other times I capitulate, forgetting to fight or not having the energy to do so.

A few months after I had the first implant the battery that powered it died. Somehow I had also caused a wire, that went from the battery to the computer chip, to move. To make things easier I had both repaired at the same time. The battery area looked fine but the back of my neck, where the wire surgery had been, was very red and swollen.

I was at my mother's house recuperating. It looked so bad that she insisted I call the doctor. I reached the resident.

"The back of my neck is very red and swollen. I think it may be infected."
"I am sure it is just the normal red from surgery."
"No, I don't think so. It is bright red and looks very swollen."
"Again, that is the way any area that has just been operated on looks. Don't worry about it."

I knew it did not look right. I pushed back 2 or 3 times, "No, it does not look right." "It's fine." Tired of making the effort to be heard, I gave in. "Okay. Thanks."

It turned out I was right. It was infected. By the time I saw my doctor it was so infected I was immediately admitted to the hospital. I was in for a month and ended up having the implant removed. When I first talked with the resident I knew I was right. That implant had helped about 85%, allowing me to touch my face and not have constant pain. The next one did not help. I lost the first one, at least partially, because I did not persist in my insistence that the resident listen to me.

The pain started 6 months after I moved to NYC. I was unaware that I had private insurance so I went to a clinic.

I saw the doctor, a resident in training. "The pain in my face is terrible. It is constant and sproadic. I cannot tolerate any touch without horrendous pain. Please help me. Please give me something."
"It cannot be that bad. I am not giving you medication. Try aspirin."
Week after week. Month after month. "Please." "No." "Please." "No."

One day I was talking to him on the phone. "Please." "No." "Please." I started crying. "Please, you have to help me. Please." "Allright. Allright. I will write for some codeine."

Getting through to him required sobbing, begging, and being brought to my knees. The pain controlled everything, including my logic and thought. In any other situation, and without the pain, I would have insisted, very early on, that I be seen by an attending doctor. I would have shouted to the rafters until someone listened: "I am in pain! Help me."

Many other times, many other capitulations.

When I am asked to list some of the things that help us deal with our pain, things we should do, how we should act, I suggest keeping a diary or journal, listening to our bodies, stopping when we need to, giving ourselves permission and so on. The thing I do not think to add is also important. Persistance, insistence, refusing to go away until we get what we need.

It is hard but the more we do it the easier it becomes.

Persisting, insisting. Muscles we often forget we have.

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