today was another bad afternoon. lots of anger and sorrow (and an infinite amount of tears). why couldn't you fight this harder Jim? why did you leave me here?
i can't call and talk to anyone about this. i'm pretty sure people are sick of it. and when i say these things aloud i feel like i'm gonna lose it.
the 6 month mark is coming up soon and i am so afraid. i have to move on and leave jim behind. in a way my heart has been sort of waiting here; waiting for him to come back, waiting for someone to fall into his place. my mind has known that this is impossible, but in grief i have learned that the mind and the heart no longer have a line of communication between them.
this is pretty much impossible  for people around me to understand. no fault of their own, in this respect i find that ignorance is bliss.

i just want things to be as they were. i'll even take you in your demented state. if i could just touch your face one more time...i think that would hold me over for another 6 months.

what is up with my brain today? I'm talking to myself (aloud), walking up and down the hallways, my stomach has that sunken sickly feeling, i can stare at the same speck on the wall for an hour at a time...
I thought these kind of days were over, guess not.  the tears aren't rolling down so that is a plus. but the day isn't over yet.
side note: dorian keeps asking why i haven't gotten him a new daddy yet. and arwen was reading that "when goodbye is forever" book to herself. i told her about jim's brain autopsy report and what they (the researchers) use it for. she told me "but wouldn't it have been better if somebody else's daddy would have gotten sick and died, then they could have studied their brain instead of my daddy's?" i just smiled and kissed her head. i am seriously at a loss on what to tell these kids sometimes.

Update at 6:45pm-
I am SO PISSED AT YOU RIGHT NOW JIM!!!!! THANKS FOR LEAVING ME HERE TO ENDURE THE REST OF THIS MISERABLE FUCKING LIFE WITHOUT YOU!
I don't know why i am so ANGRY at you but i am. and for the moment i can't stop it.

Final Verdict

Jim's brain had Stage VI Alzheimer's Disease. I spoke with the doctor that fist diagnosed Jim today and he said that Jim's "off" behavior is what threw them towards the FTD diagnosis. He said that Jim had what they call a high mental reserve (or something like that) so his brain was able to handle trauma a lot better than most people who have dementia. He said that they are currently experimenting with the ways testing for dementia is done because people with higher intelligence are not being diagnosed soon enough.
He also said that they had presented Jim's case at a conference last week. I expressed my utter lack of understanding at this whole thing, that jim could be so into this disease yet still walk and talk, play the piano, how he was denied by hospice 3 times, and how the doctors were testing for HIV and mad cow disease while he was actively dying. i left out a lot, which he was aware of, he just said he didn't know and that is what he is trying to figure out. i'm glad he called.
There are two groups of doctors in my husbands disease, those who treated him by our insurance which would be Kaiser. and those that diagnosed him and studied him, these were paid for by us and grants, this is UCLA-Easton Center.
there was never any hope in this disease, i knew it was a dead end from the beginning. I just never imagined the how alone we would be in it. even till the last moments we were alone, hospice signed us up 13 hours before he died and yet no one was here in the last hours. they didn't think he would go so quick, no mind that i said he wasn't going to make every much longer (i gave them less then a day and a half estimate), they insisted that it wasn't "time" and said that the "team" would be in in 2 days.
 he was in respiratory distress for an hour and a half. shaking, arms and legs flaring, turning purple in this fingers, feet, and face. it was like how you see people die in the movies being held in the arms of someone else. the shaking and distress for a couple of minutes before...nothing. well, drag out those minute by over an hour, it was HELL! and i tried so hard for it not to be that way, if he could have been on enough morphine to go into a coma then respiratory failure, oh Jesus,  how fucking hard is THAT TO GET?!?!

Poetry- Eulogy to a Hell of a Dame

some dogs who sleep At night
must dream of bones
and I remember your bones
in flesh
and best
in that dark green dress
and those high-heeled bright
black shoes,
you always cursed when you drank,
your hair coming down you
wanted to explode out of
what was holding you:
rotten memories of a
rotten
past, and
you finally got
out
by dying,
leaving me with the
rotten
present;
you've been dead
28 years
yet I remember you
better than any of
the rest;
you were the only one
who understood
the futility of the
arrangement of
life;
all the others were only
displeased with
trivial segments,
carped
nonsensically about
nonsense;
Jane, you were
killed by
knowing too much.
here's a drink
to your bones
that
this dog
still
dreams about.
-C. Bukowski

turning point

so i was texting a friend of mine today and the subject of how (or when) Jim and I started dating came up. while i just gave my friend a tidbit of the moment i later thought that i needed to write the whole story in my blog because i hadn't thought of that memory in a LONG time.

   So i was in Jim's office and i had just worked a proof on the black board. He was my mentor/advisor (and well, friend) then and I WAS NOT TAKING ANY CLASS OF HIS AT THIS TIME.  I was lounging on that big sofa he had in his office looking at my proof trying to memorize it. I had a copy of 'the age of reason' by Sartre next to my stuff.  He had commented on it and we started talking nonchalantly about it. I was concentrating more on the black board. then i told him that i wouldn't mind sleeping with Mathieu (from the book) i don't know why i said this, well, i do but that is another post. and then jim says that he wouldn't mind giving Lola a go (can't remember the exact word he used). 

    I was totally shocked he said this, i was expecting a laugh to brush the subject off or a request to leave his office after my comment, i wasn't expecting an equal pass. Then he asked me to go with him to a basketball game later in the week. i said okay and i wrote the info down in my little pocket book. 

   and that was it. not as exciting as one would expect a prof./student relationship to start out, but it's what i got.
   as a side note, that little piece of paper from my pocket book i mentioned above i still have. My friend andrew had it because i had written some info on the back of it for him, he later returned the paper to me after jim and i were married. and the black board still had my proof on it until jim was forced to retire. little pieces of the sides and bottom had been erased so other students could work out some problems, but jim never let anyone erase it (and it was long. took up the whole board). i kept on telling him to take it down but he never did.

this goofy picture is of jim 6 years before i knew him.
 it has always been my favorite.

  

widow bitch

this is what i've become lately.
i stopped my meds (except for anxiety and sleeping ones) 2 weeks ago today. i did it cold turkey, which i know is not a good idea, after my therapist told me i might have PSTD.
that's it, i want it to end. i don't want to do this anymore. i'm tired of grieving, i'm tired of being numb. i want myself back.
i missed my last 2 appointment's with my therapist and i won't be convinced to go back anytime soon.
i feel like a coward taking the pills and going to the therapist. when jim's death came at me with flying glass and fists i thought, bring it, i wasn't going to let that scare me away. now here i am, fleeing from my own feelings, from this pain death left behind. i have to go through this...naturally. i want to feel like i've made it to the other side with my mind.
some rough emotions are headed my way, i can feel them coming. and i want to meet them head on.