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Wednesday, August 7, 2013

Ah, Life

I say I want to die, to be done with it, to be released off this planet but truth be told, I’m as scared as I am in pain…and that’s a fair amount.  I want to believe I’m not afraid, that anything is better than this, but I don’t know that for sure, of course.  And if there is anything I can take away from this visit it is uncertainty.  Plus I need to stop reading my online papers.  And if I ever get my eye glasses back (a very long story and I have to go back again in six weeks so I still have a very old prescription in my old glasses) I can read again.  I can’t even think I’m in so much pain.  Nothing is distracting me.  These are the moments of life-ending temptation but if I die in this much psychic pain I’m afraid I won’t move on….and being stuck here is terrifying to me too.  So that’s not an option.  The only other option is to suck it up and accept it.

And I can’t gain an ounce to save my soul.  Maybe gaining an ounce will save my soul, who knows.  But I have no appetite and force myself to eat something every day.   My mom was like this; thin as a rail and we couldn’t get her to eat.  She would cry and say nothing tasted good, and she couldn’t tolerate much of anything food wise.  Certainly not anything that would put on the pounds.  I’m just like her that way, though she didn’t have NF.  That’s my bonus disorder.

At any rate, I am in the abyss big time and I don’t know why.  I know I’m tired of fighting for a life I don’t want.  I know I’m sick and tired of being sick and tired.   I know I’m thinking about Oliver and when he passes….that will be the end of pets for me.  No more energy.  Except for Oliver.  I’d push myself off a cliff to get him what he needs.  Okay, enough.  I will be praying, drumming and meditating away the day.

On the funny “strange” side of life, I got a very nice email from a woman about this blog.  She has NF too.  I wrote back, but didn’t hear again for a few weeks.  Then I got an email the other day from her and she wrote that she was sorry she hadn’t gotten back, her mom just had surgery and she’s flying out to see her…in Seattle.  Not only in Seattle, but LITERALLY walking distance (for someone other than me) from me.  Outrageous.  I wrote back and told her she could throw a rock and hit my apartment.  I mean, all she had to do is go right out of her mom’s driveway and drive ½ a mile and there I am!!!  So we agreed to meet.

She came over, we talked, laughed, compared notes….she got NF from her dad’s side; I’m a spontaneous gene change (they think).   She has three kids and one has NF, the others do not. I have no children; tubal at 25.  She says she is in some pain and the tumors are spreading.  She looks great; healthy and no visible tumors that I can see, though she can.  She kind of looks like I did 20 years ago; and she’s 20 years younger.  But that means nothing.  We laughed about the differences in NF people.  As I always say, if there are 20 of us in a room, you’d think we had 20 different disorders.   The bottom line is this: you can’t look at someone like me and think that’s how you will end up.  There is always someone worse off, someone better off.  Ah, life





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