Streaking

I feel like I am turning into a character from a Stephen King novel.

It is cold and wet outside; the sky covered in clouds.
I am burying myself in blankets and socks. Also, a warm cat or two to snuggle with.

So much writing. I need a new ribbon for my typewriter. [Smith-Corona Corsair Deluxe portable]
Actually, my online writing is done on the computer, the typewriter is just my old, old friend; I think I got mine back in 1990? Thereabouts.

However, the overall mood, the same themes as are in the books I've read until they became cannon, it feels a bit odd to suddenly be living it.

I don't really want to see anyone right now, no company. No distractions.
My downstairs is finally closer to being cleaned and organized in a way my Asperger brain enjoys and can function in. Part of my brain is already doing the same to my upstairs level, but the actual work there is harder; the bedroom is still the last room where there are things left that he moved and touched and put into place.
It is harder to be 'ready' to change that. Ready, ha. As if such a thing could happen in a human life. Rationality can only go so far, even I could only prepare for some of what was to come.

Cleaning the bedroom changes it. Changes it TO a bedroom. It started that way, when we first moved here in 2008. Once he got sick though, it changed. We slept there, yes, but being bed-bound changes so much. The mood of the room was not the same. The items in it. The sounds. The colours. The photos and objects on the walls, even.
It was a place of sickness, even by accident. By proxy.
Now to me, it still holds the strongest memories, and the majority of my reluctance to change it.

Words and thoughts, even lucid dreams rob me of any real 'rest'. My thoughts have become a perpetual motion machine, spinning ever forward and back. Flipping between some social order of "normal" to be outside of my house and in social situations, to hysterical uncontrolled laughter at something that I find funny or he did. I hear his voice less in my head, but a stronger compulsion to 'talk' to his TARDIS urn.
I miss his body, but in strange ways. I just miss how he felt pressed against me. I miss having my head and my ear line up with his heart when we were physically close. I miss kissing the part of his neck where it met his hairline. I miss how his ears were always cold, even in the Arizona summer.

Mostly it comes at night, when I am alone in the bedroom-that-is-not-a-bedroom, sleeping in a bed that feels half empty.
It is different because there was no choice involved. He did not choose cancer. He did not choose to die young. He did not choose to have a tumor remove his memories and change his being.
He only chose how to live.

Busy days help me. Busy days though, cannot keep out the thoughts. The questions.


The world is so open to me, but the person I want to share everything of myself with is gone.

Is it still a desire if there is complete certainty it will never happen?

The Belchies

Friday was pretty ... intense.

I spent the first few hours of the day just sobbing.
Could not stop crying.

I kept seeing his last few conscious hours over and over.

My friends (Wash's frat brothers) sent me a text in the early afternoon to the effect of "We love you, and know it's a bad day. Can we still take you out for distractions?"
I said yes.

We had a nice time getting out for some frozen yoghurt. That was a nice break.

We were attempting to go as a whole group to a "movie in the park" event; a free movie on a greenbelt/lawn. With our weather this is a common activity.

Sadly it was like a coming together of all kinds of "worst case" scenarios.
Some members were running late... we did not have enough blankets to grab space for all of us, there were dogs running loose around, the folks behind us kept spilling pizza on my blankets and pillows.... It became obvious before showtime there were FAR too many people who came to see the movie than the venue really had space for.

To their immense credit my friends cared. About me.
Wash used to be my rock and calming presence when I went out. I do not like going out, really, I do not like crowds, or uncontrolled animals (even at an animal friendly venue), wayyyyy too many toddlers walking around with no parental supervision... my brain was going into overdrive.
Too many noises, too many sensations, too many variables for me to calculate, which is what my brain does when I am outside or in a crowd.

My friends said... "Tashi? You look really uncomfortable. Let's go."
And we did. And they did not make a big deal of it, or make me feel bad for having to leave a planned event due to me.

We went over to C* & R*'s place and ended up getting pizza, and lots of beers, and watched "Clue".
It seemed liked a much calmer (and to me, more enjoyable) evening.

I was still missing Wash, so much, but they really helped to distract me and get me through a bad day.


Today, it's suddenly Fall.
Cold weather, cats wanting to cuddle, and an extra blanket needed for the bed.
I like this. It also means in a week or so I'll have to switch the fish around some; the babies need to be moved to a larger and warmer tank, and the big tank needs to have a heater put in it so the big Molly I'm a Fish Foster Mum for stays warm at night.

I've been watching "The Belchies" this morning, so far about 3 times. I think it might be my favourite episode of Bob's Burgers. Which also means I will be watching 'The Goonies' later, because we did not see it last night.


Everything is different and new at the same time is it familiar to me.


Lately, I've just really missed in so so so many ways getting to be geeky around someone else.
I miss making a reference out loud to a show, a book, a movie and having that person (Wash) who got it.
I miss talking about George Lucas.
I miss talking about geek cons and panels.
I miss gossiping and guessing about movies to be released.

I don't have anyone to talk to anymore like that. He's gone.
I find myself still having conversations; as if he could hear.


Cleaning today. Doing some laundry; clothes and the sheets on my little bed I sleep in, and washing the winter blankets (heavier than the summer ones). They're clean, but they kinda smell like the linen closet.


Just trying to tread water today, keep breathing.







*Not their real initials

Revolver

Mornings seem to be the worst. No matter how I wake him up it's never "right". Then, he tries to "make the bed" and always gets mad when I re-do it properly behind him.

I love my husband, but I also love my bed and nice sheets. I love them to be proper and in place, and clean- no berry jam spilled onto them.

He does not always agree. Then again, Wash was not the one who worked for two years solid to save up to afford a nice proper adult 30 year warranty bed. I did. It's a bigger investment than any of the cars I've had. I've had insomnia since I was 11. This bed was the first I've slept on to make me like sleep and even WANT it.

Beside the point. Mornings are bad. He doesn't like to be woken up, he hates me watching him take his pills (but he won't do it otherwise), he hates being told to wash his face and brush his teeth. I take no joy in asking him to do it. He thinks I do.

It's hard to watch my husband, the grown man I married suddenly revert.

Things get so much harder for him.

Unlike toddlers who need help, but learn, he needs help but never is able to learn. He cannot remember new skills! That part of his brain is just gone. I get no joy from the help he needs. The only relief I do get is when he asks for help; when he's present enough to know he needs assitance, and asks for it. That's rare though, most of the time he is not cognizant enough to really understand he might be having issues.

Hospice folks say to try to let him do things on his own, when his safety is not at risk. BUT, even that has a downside, as most of the time I either have to correct and do it properly or safely behind him, or even just clean up. He gets so angry at me, because he cannot do things anymore. He's really angry at himself, or even the cancer, but because it is still just me here caring for him 98% of the time, it comes out directed at me.

The other issue is my own brain. I have Asperger's. It's difficult enough to try and cope with all this emotional shit poured on top of me, and the stresses, but I have no space. I have nothing that stays clean- he gets into EVERYTHING. I have made compromises on everything, my house is far more unkempt and unclean than I would EVER prefer, but I can either watch Wash or clean, rarely both. He comes behind me and messes things up again anyway.

I'm hoping he can stop trying to make the bed in the mornings. Or, at least, not be angry with me for going back and fixing it.

It's a hard balance between what can help him feel less frustrated and what I need Aspie and OCD wise to be functional.

The first hour or so that he is up seems the hardest. He's confused, angry, and needs structure outside because his own brain cannot structure things for him now.

It is hard.

Brain cancer is a nasty evil.

Mostly Eidetic

As today is Autism Awareness day, I'm "out" as an Adult with Asperger Syndrome, diagnosed in 2006.

Wash is having a SLOW day mentally, he is calm, but can really just watch things today, he's not that responsive.

I'm open to anyone who wants to (respectfully) ask me questions about living with AS as an adult, and as a caregiver. It certainly adds in challenges.

Thus Begins

I love my home. I (for the most part) love my city. I love being this close to my downtown, being able to walk to our main street (Mill Avenue) and the Lake.

Except for about 10 days a year. 4th of July, Christmas Parade, The first week of a new semester, and New Year's Eve.

There is an annual "Block Party" which attracts 40-100,000 people per year.

There is free music.

Fireworks!

I frakking hate it.

It's 10am right now. They've started playing music. It's over 4 blocks away and the bass is loud enough I can frakking FEEL it. It's only going to get louder over the next 14 frakking hours.

People park illegally. We caught a couple last year who parked on our LAWN in a mini-van and were having sex! We have had people drive fast on the blind curve at the end of our street and hit /totaled 3 cars. Beer cans are left EVERYWHERE. Glass is left in the streets to shred tires. The city does not clean up my street nor do they even cone it off to allow for just resident parking. I've brought it up before in City Council meetings as the neighbourhood one block south of us is allowed for resident parking only and they do not have the same problems we do.

I'm feeling awful from my shots.

The bass is driving me mad. I want to cry. Even sitting in my closet does not help.

Not a fun day to be my flavour of Aspergian.

Eventually I will find a place or a friend and wisely spend my New Years at that location. For now, I'm just going to be super cranky all day and probably be popping all day (my 'tic' is a verbal sound close to a "pop" I make. I'm usually unaware of it, Wash notes it though.)

Dear Readers, and New Readers,

Just please be safe out there today/tonight. Have plenty of fun, but be safe. Have a designated driver or call for a FREE ride; link below is for all 50 states with programs.

I have worked in a morgue before. PLEASE have fun, but not at the cost of a life.

http://duijusticelink.aaa.com/for-the-public/aaas-role/public-education/sober-ride

I will write to you all in a New Year.

Cheers!

Not worth it

I so do hate the days that take away my loving husband and leave me with a angry, selfish man who does not even see his wife as a human being.

I know it is 90% cancer/tumor/medicine shit, and maybe 10% his old personality, but I hate it all the same.

I get so sad and frustrated trying to anticipate what will set off his ADD like symptoms; he literally can not multi-task. I as a person, as a wife, even as a caregiver always lose out. I get pushed back to second place or further and forgotten.

I lament and I mourn I had perhaps 4 maybe 6 weeks as a newlywed with my husband before the tumor took over. Now I've had two years longer than 98% of his type of brain cancer patients have had with their spouses; I think of that every day.

I don't feel respected, and I don't feel loved. Rationally, I am aware, it is his brain.

But I'm not an android. Even with Asperger's I feel. I hurt.

I wish there was some kind of "happy" we could both enjoy. There does not seem to be much of it lately.

If this is his last Christmas (I can always hope it is not, but the numbers are killjoys), I want it to be a good one, a happy one. I want him to have things to make him smile, to feel joy for. Something to encourage him to just keep living.

At the same time, for me, it hurts so much to know this might be his last Christmas, he can and will treat me however, and I have to just deal with it somehow.

I wonder if it's too much to ask for both of us to be happy.

Small thought on today

Part taken from a larger reflection from me (not ready to publish the whole thing yet)

This is how my brain has always been. It's why I take charge with almost everything, so it gets done "correctly" and my brain won't hurt. I don't know how to really describe it, except maybe imagine putting together a puzzle every day that at any time someone can mess with or steal from and then you get a migraine until the puzzle is put back together.

Screw the heat, give me two wheels and a helmet

Ah, summer.

It gets to 40C-50C. (In the over 120F range, we were at 118 yesterday). Power goes out (we had a brown-out yesterday) fans barely move the heavy particulate filled air...

Frak it all. I hate summer (here), but there is one, one bright spot for me.

Le Tour.

Every year since I was... 3? 4? I have woken up at 3 or 5am to catch the live stream of at least the first stage. I love cycling with all the passion and obsession that me as an Aspie can have. I have followed teams, fell in love with riders and discarded them after I heard of the doping scandals in the mid, late 90s and the mid aughts too. Breaking Away was one of my favourite movies growing up. I even eventually found that very bike and had it restored, a lovely bright red 1976 Masi - changed out the banana yellow seat and upgraded the gears, but he was lovely and all mine.

Thankfully Wash doesn't mind. He doesn't quite "get it" as a sport, or how to watch always, but I can appreciate how at least he doesn't kick me away from the TV.

So, past few days I have not been feeling -super- something my doctor did warn me about but said it was "unlikely" to effect me. Frak that. After managing to get all the paperwork complete for this month, making sure that we both still have health insurance and prescription coverage, dealing with the car, everything... I just kinda crashed at the end of this week. Too weak really.

Wash was a HUGE help yesterday and went out with my mum to get us groceries. Not only was this a help to keep me on some bedrest, but I am less worried about having to face some of the huge crowds for this weekend.

I've written about it before- check July of last year par example... I have Asperger's. Several times a year I hate living in my awesome home because of the proximity to downtown. Festivals go on, loud music concerts that shake my house and windows from 5 blocks away, and the crowds... usually an extra 20-50,000 people all up in my small quiet area.

People park where they legally cannot.

People litter.

Kids will have sex in cars on our FRONT LAWN.

Beer bottles litter the street. No, I don't like driving or walking on broken glass.

For me, it is just simply too much stimulation. Too much noise and people and all the things that just make me crumble as a person and want to cry and hide away. Normally I just inside and watch the fireworks from my bedroom window- though with the new 3 storey plus Old Folks home being built across the street it will now block a majority of our view. I honestly wonder if that means I can get my rent lowered since the view is now gone...?

I imagine I will be mostly cooking and cuddling with my cats tomorrow. Perhaps Wash will find a distracting movie for us, I can hope, otherwise living through tomorrow is going to be my bigger challenge.

I dislike traveling away because some fucker ALWAYS comes and steals our reserved (in the complex) parking spot. I really have a thing about parking in the same place... it is just a million little disruptions that frighten me and distract me from being and connecting with the world.

Thankfully there is a month or so before the next "summer concert" where I must go through all this again.

Sadly even my prescribed Ativan doesn't really help the panic on this type of stress.

Back to a happy moment to leave off at - I'm still trying to explain about group time trials to Wash- I heard from one of you all, my lovely and kind readers, and though I still have to make contact with the manager, it seems that our local Lowes Hardware heard about our garden being (mistakenly) destroyed they have offered to replace it all, even our mature plants so Wash and I can have our "Victory Garden" back again. I honestly cried when I heard about it.

I also tried my hand this past Sabbath and made challah bread for the first time as an adult!

I will say this as I continue on down memory lane- the first time I was ever sad, disappointing at my sex, at just the fact of being born female... was when my father first informed me that only men could ride in Le Tour and even in my lifetime it was not likely to change. Up until I was 11 or 12 I even held out hope of myself training hard enough and being the first woman to do so. It was more around that time though that I started to move away from socializing with real people- I lost nearly every one of the several people I trusted enough to call "friend". Riding as part of a team began to unnerve me and as I was forced in school to do more "teamwork" I came to the realization that I could never do something like that. 150 mile bike races, yes, absolutely. Did that. But riding as a team...? Not for me. I began to really get more into pathology and finally care a bit about my own families history as a family of archaeologists and a few anthropologists. Dead people just don't -bother?- me like dealing with those who are alive.

That was offsides, wasn't it?

Today involves books, kitty cuddles, perhaps some cooking, and just trying to be. Always now it is a matter of being present and enjoying the now- each day a gift.

Perhaps a 120F gift, but still...

To me, it's not summer until I hear Phil Liggett screaming with passion for the riders.

(Also, probably throwing in again with Team Garmin-[whoever] though I do love certain riders on other teams. I have followed the Schleck boys for years, and remember watching older tours with Max too...)