Saturday, December 17, 2016

Stream that starts at 1:30 am and ends never

I have ALS.
I am a person with ALS.
PALS.
Fuck.
I wish I could wake up in the morning and not have ALS.
I wonder why I have ALS and not someone else.
I guess that is a question for the scientists and researchers.
Or G-d.
Maybe G-d is mad at me? (Rhetorical)
I don't think G-d is mad at me.
Does G-d gets mad?
I am not sure I want to think about G-d being mad.
I am pretty sure that is up to interpretation.
Adam is mad.
The dog peed on our carpet.
Adam is cleaning it up.
I can't help him because, yes, you guessed it, I have ALS.
It was Sonky not Jackson.
Pretty unusual.
We need a mini steam cleaner.
I should get that for Adam for his birthday.
That is pretty unromantic.
He is still romantic.
I hope he is always romantic.
I wish we could get old together.
Adam will be a cute old man.
We have a lot of stuff in our house that is in our way right now.
Like extra chairs.
Have to move the chairs to make room for the wheelchairs.
Lots of wheelchairs.
No more walkers.
We have the walkers but I am really not able to use them anymore.
We put them away.
One is in Sarah's room.
Sarah is coming home on Monday for a whole month.
I am so happy.
Have to move the walker from her room.
That is depressing.
I don't want that to be in her room.
I thought about not blogging until she is done with her finals.
Maybe this will distract her.
I'll tell her not to read it.
She probably will anyway.
Worth a try.
I am proud of her.
Proud of all three of them.
I wonder if they know that.
I think they do.
I am going to tell them more.
I wish I was going to be around longer for them.
That sounds like I am giving up.
No, its just reality.
Not giving up just being realistic.
Reality.
We have to move some of this stuff out of our way.
Like the extra chairs and the junk on the kitchen window sill, and in my bathroom.
We have to remove the wall in our bathroom.
Weird.
Removing a wall.
We are getting a lift chair.
Maybe it should go in the living room.
I can't get in the den.
I have a bar on my bed now.
Like you have for toddlers.
But smaller.
Adam has to help me get dressed now.
And undressed.
And help with the shower.
Like a toddler.
I am going backwards.
Like Benjamin Button.
Was that the movie?
Can't remember.
Bill made Gillian a soup she really likes.
Ralph and Terry made us potato knishes.
Gillian is in heaven with both of those foods.
She has stick-with-it-ness.
That should be a real word.
Stickwithitness.
She has been a vegetarian for a long time now.
Maybe that will serve her body well and she will always be healthy.
Oh G-d I hope my kids stay healthy!
With all the craziness in the world today, who will protect them?
Adam.
Adam will.
He is a really good Dad.
My Dad is a great Dad.
He and my Mom are working really hard to help me.
I am sad for them.
Very often.
I have to think of something else right now.
Thinking about how they are feeling is too hard.
Puppies!
Let's think of puppies.
A new friend sent me a picture of her puppy.
I have to respond.
He/she was very cute.
A pug.
Ean loves pugs.
...



4 comments:

  1. Please keep writing. Your stream of consciousness makes me feel so connected to you. I pray for you everyday.

    ReplyDelete