November 25, 2003

• Wretched Debility and Other Petty Crap

  
  

  Fleetingly, I considered making this a private post, but that would be too much like giving in to the fear.  This shit would be scary as hell if I didn’t know what was going on.  This morning, after I had talked Greyfox into moving off the bed to make it easier for me to get up, and he had called off the dog who had been weighting the covers down, it still took me 20-30 minutes to get out of bed.  Koji had been hovering and I was uncertain whether he was expressing concern or just waiting for the carrion to die.  I know he loves me, but when the chips are down he’s just a big clumsy galoot in a furry suit with a rubber snoot whose primary goal in life seems to be to impede my progress.

  
  

  On days like today, any little impediment can seem insurmountable.  After an aeon of willing my body to move and getting, at first, only a few feeble twitches and fitful lurches for my efforts, I finally got enough sluggish neural impulses through my dense and lumpy myelin to sit on the edge of the bed.  Then I started looking around for my slippers.  After a geological epoch of that task, I concluded that only one was visible.  For a while I considered settling for the snow boots I could see lying beside the woodbox across the room, but by the time I’d lurched past the end of the bed on my way to the boots the second slipper became visible and it was in fleecy comfort that I limped and tottered off to pee in privacy.

  
  

  That had been the objective all along–I know women from the fibro forums who keep a bedpan handy for such moments, especially first thing in the morning when the body tends to act like a car with its clutch slipping, but some shred of pride or vanity has kept me from resorting to that.  I accept help from my guys gratefully if not cheerfully when it comes to getting moving or getting stuff without having to move.  If it ever comes to the point that I need help performing my more private bodily functions or, heaven forfend, with wiping my own butt, I think I might blow my brains out first.  That seems petty and foolish, but it’s a sincere statement of my state of mind.

  
  

  I’m having a rough time dealing with my expectations.  I demand a lot of myself and I tend to get disgusted when I fail.  I recall, when this shit started for me as a kid, wondering, “why me?” and feeling sorry for myself.  Through the grace of Spirit or some trace of human strength or ego or something, I’ve progressed from self-pity to contempt.  The tears in my eyes now are more from frustration and anger than from any gentler emotions.  This damned disease sucks, and I’m a wretched failure at coping with it.  I sit and fumble with the controller on the PS2 and the only cause I can find for gratitude is that all I’m messing up is an inconsequential game, not anything as important as the website I should be working on or any of the backlogged readings for clients.  I know I can’t wrap this foggy mind around XHTML and CSS today and, readings??–forget it!

  
  

  I have already spent an hour on the four paragraphs preceding this one.  By editing, deleting and rewriting, I manage to make mere drudgery of what, in better times, is simply a smooth flow of thoughts through fingers to keyboard.  Making matters worse and taking even more time and energy, is the effort of dealing with Greyfox’s anxiety and churlishness.  His NPD renders him incapable of being contented until he has stirred up everyone to an emotional pitch approximating his own. 

  
  

  He interrupts me in an attempt to impel me to interrupt Doug so the kid will get up on the roof and shovel off the snow.  Greyfox is scared that the roof will collapse.  I know that that isn’t the biggest danger around here right now.  Even bigger than that is the danger that Doug and I cannot, with our words, get through to Greyfox that his arrant assholery is getting to us, disturbing the wa, the social and familial harmony. 

  
  

  He wants the wa disturbed.  When all is peace and calm, he has that insane need to stir up trouble, drama and trauma.  He can’t seem to accept the knowledge that before he came to live with us we recognized from moment to moment and day to day what needed to be done and did it.  We survived, we coped, we managed to muddle through, and did it with a lot more fun and enjoyment, much less trouble and aggravation, than we’ve had to cope with and manage since he and his narcissistic personality came along.

  
  

  Before I was so rudely interrupted, I was relating what was really scary this morning.  Getting out of bed and down that long hallway to my little pee bucket in the bathroom was merely difficult.  As I have mentioned many times, knowing the neurology and pathology of this disease removes the fear I used to experience when my body wouldn’t do what I was willing it to do, when it would fail to move and then move with a sudden jerk that sent me off balance or sent some object I was lifting clear across the room.  I’m over that fear.  Now the debility is an inconvenience, and my knowledge of it has engendered caution so that when one of these flareups is on me I avoid hazardous situations as much as I can.  No, that isn’t the scary part.

  
  

  The scariest thing this morning was after I’d emptied my bladder and put the lid on the bucket, when I straightened up and looked in the bathroom mirror.  I saw bed head, pillow face and eyes puffy from getting ten hours of sleep on Monday night after having had only one hour of sleep between ten and eleven Monday morning, after having had only three hours of sleep Saturday night and none on Sunday, after only about five hours of sleep Saturday morning and none on Friday….  If that face scares ME, who has seen it every day, what’s it going to do if I go out in public with it?  And I do want to go out tonight.

  
  

  We missed the meeting at the rehab center last night.  We are pretty much committed to go to the regular meeting in town tonight, especially now that Greyfox has accepted the job of literature person (the same position I had held until recently with the other group, the one in the older, more cultlike organization).  When he took that job, we agreed that it would require our presence at two meetings a week, which are all that this group has.  It’s fifty miles down the highway, and we recognized that there might be times that road conditions or something would keep us from going, but we committed ourselves to going when we could and so we must.  But there’s another reason to go tonight.  Sunday was our “birthday”, six months in the program and we’re due to get our new key tags.

  
  

  I’d be eager, looking forward to it, if not for this damned disease and the wretched debility.  Right now I’m not even looking forward to stumbling and fumbling over to my pile of clothes by the bed and getting myself dressed, but it has to be done.  It’s too cold in here this afternoon for pajamas.  The two hours I’ve been at this keyboard writing and rewriting this little blog have gotten me chilled and shivering.  Gotta go now…

  
  

   

  • 4:25 pm
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