January 5th, 2009
I dreamed last night that I needed to speak in a situation in which I was alone and the person I had to speak to did not know me or that I had anything wrong.
I was so worried about opening my mouth only to make “uhhh, ahhhh, wuhhhh, mmmuhhh, ehhhhhhhhh” sounds.
For some reason, it was very important that I speak clearly to this person. I concentrated so excruciatingly hard, focusing and drawing all my energy to the muscles of my mouth.
I fully expected to only hear my usual non-verbal braying. And at first the words were just fat globs of blubbery sound, but as I continued, the words began to take shapes… my mouth was in control… my speech became beautiful.
Posted in General, ALS, Dreams -
January 3rd, 2009
I cannot live with Lew anymore. He is so hateful to me. Always ignores me when I need help, then finally screams at me. I can’t help it. I can’t help that I am in this dying body. It’s not my fault, and all he does is yell at me.
Weekends are unbearable. It kills me that he makes Aiden watch TV or videos all day and stay in the same pajamas day after day.
He finds putting mittens on his son too difficult, so no play out in the snow for Aiden. If Rosa can put mittens on Aiden, why can’t Daddy?
I find myself not wanting to get out of bed when he is home. It’s inevitable that I will need his assistance getting me dressed and something to eat… nothing major or fancy… a big T-shirt, underpants, cut open a Cliff Bar, pour water and some soymilk, lay out my vitamins for the day. None of this will be done with love. He hates me. He despises the disabled who burden him. It’s getting harder and harder to get out of bed when this is what I’m faced with.
His anger, his slamming and throwing things, creates an environment that Aiden and I can do without.
He blames me for all his unhappiness, but I just try to keep him on track with parenting and being responsible. And I need help. And he wants to make the most sour lemonade from lemons. That is what makes him so miserable.
I don’t want Aiden to see me being treated so badly, so I end up going back to bed on holidays and weekends. It’s a shame.
Posted in General, ALS, Response, Frustration -
December 26th, 2008
Posted in General, ALS, Resistance, Music -
December 24th, 2008
Silk Nog with rum and a sprinkling of nutmeg. Now I can say “let him decorate, let him decorate, let him decorate.” Yes, Lew is trimming the tree that I had always trimmed. I know just how I want it… but that’s just a memory now. Oh dear… the beads look thrown, not swagged… why did I look? Turn around… sip more Nog. Dull the sense, the awareness, the reality of my locked-in energy… my torturous inability. Some more Nog for me, please.
Posted in General, ALS, Frustration -
December 23rd, 2008
None. No decorations on my tree. They wait in the box. No Christmas. No ability. No family. No friends. None.
Posted in General, ALS -
December 23rd, 2008
I can not stand all the twisting, side-stepping, dangerous reaching anymore. I want a dumpster and a crew of sturdy men with muscle to take all this shit out of here! I want a barrier-free life. I want I home I can move through.
Posted in General, ALS, Frustration -
December 23rd, 2008
Looked out the window this morning. I have my path.
Posted in General, ALS, Frustration -
December 22nd, 2008
I asked Lew to use my snow blower to clear a path for me from side kitchen door to street. My only way out… no stairs. Still waiting. Hope he will pull himself away from his iPhone games long enough to clear a path tonight. I’m so very tired of asking. I bought the snow blower, complete with electric start, to make his life easier. Not easy enough, it seems. Nothing I do will ever be good enough.
Posted in General, ALS, Frustration -
December 21st, 2008
Snow, snow, snow, and now more leaks. It’s raining in my kitchen. I don’t even want to look in Aiden’s closet… The door is stuck anyway. Just as well. The ice on the walls and floor would only make me cry. I always took care of these kinds of things. Now I am forced to remain passive while my home is destroyed.
Posted in General, ALS, Frustration -
December 19th, 2008
Thank you C.M. for the angel. It is good to be in your thoughts. Hope to see you soon, in warmer weather when I come out of hibernation.
Wishing you and your family a very happy holiday season.
hugs,
-kara
Posted in General, Kindness -