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Sunday, March 25, 2012


What do you want to be when you grow up?  A simple question, asked by adults to children almost as soon as they can speak.  I never really had an answer, at least not oneI can remember.  I probably said I wanted to write, because I did.  I do.  Still.  But there is a big difference between writing and submitting what you have written.  I haven’t tried for years, and the rules have changed dramatically, especially in the digital age.  The “business” of submitting something you have written to a newspaper, a publication of some kind, or a publishing house for that novel you’ve been working on for years can take years.  And years.
A few years ago, I wrote a manuscript entitled “The Politics of Chronic Pain Management”  I had done a LOT of homework, talked to doctors, pain patients, and of course, my own jaded experiences with patient care.  Which , in the case of chronic pain, is poor at best.  I had an agent but we never found a publisher.  Father Bush was president (I mean little Bush’s father; I’m not equating him to G-d or being offensive to anyone) and his holy war against people who need prescription pain medication was heating up something fierce and I didn’t mince words about it, nor the Patriot Act.  Don’t get me started.  Please read “Pharmacists and Other Sordid Judges” on this blog somewhere.   Some of the information has changed, but for the worse, not the better.  Sigh.
I have been trying to cut back on my pain meds to see if it helps with my digestive issues.  I have cut back my Neurontin by two pills a day (600 mg each) and my Methadone from 7 to 6 (10 mg each) so we shall see.  The reason I mention this, which probably doesn’t seem to fit, is I have very mixed feelings about what the result will be….if I am able to cut back further, what does that mean in terms my my ability to tolerate this horrific pain?  Could I have done it a long time ago?  Could I have had a life, beyond these walls?  And what the hell have I been avoiding?
I have had too many jobs to count.  Even before the pills, I had a hard time organizing my thoughts, holding down a job, knowing what I wanted to do with my life, being able to do it (not) and everything else that goes with being an adult.  Was it my choice to stay single, or did I just opt out of everything in this life?  I mean, I know the tumors are real, I’ve seen them from my MRI’s enough times.  I know the pain is real, some times it flattens me.  But why?  Why can’t I just overcome this?  What’s wrong with me?  I mean, I read about people overcoming things a lot worse then NF.  A lot worse. 
 A friend of mine shared with me that she knows this young girl (high school) who was born to a crack mother, given up to her grandmother at the age of 3, her dad was in prison and she was ADD….she is in a very challenging school, she struggles with everything except writing, but she is brilliant.  She just got a full four year ride at a well known university.  I saw part of her essay that she wrote.  It brought tears to my eyes.  It was all about wanting to serve….she did not use her background in it at all, that my friend just told me.  She didn’t play the “poor me” card because she doesn’t want or need sympathy.  She just wants to serve.  Especially special needs kids.
How do people do it?  I swear, I haven’t a “can do” bone in my body. I just don’t see that my getting out of bed in the morning and moving forward in spite of the pain is enough.  It isn’t the “get out of jail free” card that I want after I die.  Or before.

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