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, September 3, 2012

SURRENDER (not)

I had neck pain for years, I complained about it everytime I saw my neurosurgeon.  I was there for post surgery appointments following various trigeminal neuralgia surgeries.  Each time it was acknowledged and then ignored.

One afternoon I was in an elevator with two friends I saw every few years..  Both were taller then I, and for some reason, looking even taller then usual.  “You guys look like you've gotten taller.” I said Ed laughed.  “You look like you've gotten shorter.”   I took that to heart.   I did not immediately connect it to my neck pain but, at my next appointment with the neurosurgeon, I impressed upon him how bad the neck pain was.

He took out the old x-rays and put them on the light box.    “Dr. (     ) has been concerned about this for years.”    That was a surprise to me because no one had ever mentioned it.

Then he said “I want you to go right now to the orthopedic surgeon a few blocks away.  I am calling him now."   I saw him about an hour later.   Suddenly I was being told "You have to have surgery this week.   Your neck is 'falling down'.  You could be paralyzed just walking down the street."  It turned out someone, I assume a resident, had taken out too much bone, 8 years before, when he was trying to access my brain through an incision in my neck.

I had the operation, which also carried a risk of paralysis.  It really had 'fallen down'.  12 screws held clamps in the front and back of my neck to hold it up.  It added back the 2 1/4 inches I had lost as my neck, the cervical vertebrae 2 - 5, slid down, my head getting closer and closer to my shoulders. 

My friends had been right, I had been getting shorter. When I said to them “It’s a good thing you said that about my looking shorter or I never would have had the surgery or known.” she replied “We were just kidding”

I knew the neck pain was bad, it had become exhausting just holding up my head.  Nevertheless I did not insist from the start, "Something is wrong here."  I was being stubborn, ignoring the pain and instead relying on the doctor's nonchalance.

How many times do we have the pain from our pain disorder, but it feels worse, or different?  How often have we felt discomfort, or worse, elsewhere in our bodies, but decided it is nothing or 'I don't want to know'?

Stubbornness can truly disable/kill us.  The strange thing is that many of us, while stubborn about other areas of our lives, other things we need: I am going to keep working on (      ) until I get this done, I will continue to fight for myself (or family or friends or others) as long as it takes to get the result I feel I deserve, or want, are often not stubborn when it comes to our bodies.

It was a hard lesson for me, and for many of us, I would surmise.

Fighting for medical care, making medical complaints can be no different.  No matter how loud and long it may need to be said we must say it, even if it needs to be yelled.  "I HAVE THIS  (pain, strange looking thing, funny feeling) AND I NEED YOU TO HEAR ME! 

And it is amazing how liberating it is to stand your ground until you get what you know you need, even if it is 'only' to be heard.

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