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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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Monday, July 23, 2012


I read that line in a book. I always think of fear as something negative, even when it keeps you from doing something that may cause you harm.
Hope is always a positive word, a concept of good things that may happen, that are devoutly to be wished.

Many times I have said  "Don't let your pain make the decisions for you." especially when you are considering treatments, options, and surgery in particular.

Maybe hope too should be silenced when you need to make the big decisions: I hope therefore it will (help, work, fix me).

How do we stay grounded?  The pain is often so bad it is hard not to let it become the voice of reason; when by its presence reason is often absent.

My implant remains in me even though it failed a few months ago.  I have written about it before.
Last week I called the company, for the second time,  that makes it,  after having seen my neurosurgeon once, talked with the neurosurg. who had placed it and lives a number of states away, and 2 representatives from the company that are trained to check the unit for problems.  Everyone said "I'm sorry, there is nothing else to do."  However...

The woman I last spoke with gave me different information then everyone else.  Some of it made sense: maybe something is wrong with the battery that powers the unit.  It is possible something is not registering when it is checked."  I thought it was a good idea.  I also thought it was a good idea when I first suggested it to the surgeon who said "No.  It is fine."

She also gave me slightly different information about the wire connecting leads and how they could be changed without removing the unit.  That was not the explanation I had previously gotten.

So hope comes in the door again.  Fear resides here too.

The fear of removing the unit when it may be fixable is based on hope, hope that it can still be fixed.

Is there a point where the two need to be blocked?  Can they exist alone or is it always the pair when decisions need to be made?

I do not know.  Sometimes I do think my unfettered hope is a negative thing, but without hope what else is there? 

I put the question  out to  you. 

My reality, our reality of pain, is it inconsistent with hope, must it always be paired with fear?

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