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Please begin with an informative title:

February 26, 2013 marks 6 years since brain surgery for a tumor called a crainiopharyngioma. My life will never be the same.


You must enter an Intro for your Diary Entry between 300 and 1150 characters long (that's approximately 50-175 words without any html or formatting markup).

Six years ago today I had an involuntary birthday.  A wonderful surgeon and his team worked on removing a tumor from the center of my brain for over six hours.  It was successful, but damage was done to healthy brain matter as a consequence.  A new me emerged from the pain and fog of post-op recovery.

My personality remained unchanged (which was a good thing).  My hair grew back to cover the cresent moon scar that ran across my head.  The dent on the side of my head where bone was removed and replaced wasn't very noticeable.  However, my body under the skin and bone was quite different.

The pituitary gland, the master control of the hormone system is gone, and the hypothalamus damaged. Luckily man made replacements are available for hormones needed to survive.  They work well, but aren't quite the same as the real thing.  I'm most thankful for a med called desmopressin acetate.  Without it I would have uncontrollable thirst that no amount of liquid could quench, and a constant need to urinate.

It seems that to get to the tumor, the front of my brain (the frontal lobe) had to be lifted out of the way.  This was damaged in the lifting.  Each part of the brain is specialized.  The area damaged for me has to do with motivation and desire.  Frontal lobe syndrome is what I now live with.  I basically have to convince myself to do anything.  From simple things like getting out of bed to more complicated ones such as cooking myself food(I live alone).  Lots and lots of talking to myself.  I'm mostly annoyed with having to talk myself into getting up to use the bathroom instead of soiling myself where I sit.  

There's so much more I could write about, such as a tiredness no amount of sleep can fix or the knawing hunger that happens every time I eat.  However, I've run out of steam at this moment.

A couple final thoughts for now.  When/if you see someone with a handicapped sign and you don't see a physical problem,know that there's more to the story.  If you meet a disabled person try to remember to NOT say "But you look great, you don't look disabled!"

Extended (Optional)

Originally posted to http://queerliberty.blogspot.com/ on Tue Feb 26, 2013 at 09:34 AM PST.

Also republished by Invisible People and KosAbility.

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