David Sr's' Hoarding House and David Jr's Funeral

In 2003 when I'd been forced out of my own home by my in-laws, Abby and I moved to Edmonton.  For three months we stayed with my good friend, Randy..... he's not a good friend anymore, funny thing.... but at least he was honest.  He told me that he couldn't stand feeling helpless as he'd watch me writhing on my mat on the floor so he decided since he couldn't save me, he could at least save himself.  I miss Randy.  I miss all the Randys I've ever known.  So maybe it's not him that I miss but rather his Randy-ness.  There is such a labyrinth  of stories to tell, like convoluted passageways leading in a bazillion different directions, but as Don Maclean sang, "all roads lead to where I stand".  So much for free will.  So is there a passageway that might have led to a healthy Deanna?  How far would that path have to back track to skip the event, the thought, the emotion, the virus, the DNA segment that caused this smoldering wreckage of humanity that is ME? As I said, so many narratives inside narratives.... back to 2003....  I was working in the fine arts department at the University of Alberta as a life model and met a 63 year old man in the fine arts office.  We became friends.  You know what?  I'm too  tired and sore today to tell this story.  So I'm going to skip from 2003 to May, 2017 when David sent me a text to let me know his adopted son, also David, who had cystic fibrosis, had finally succumbed to the inevitable.  I call David Sr's house "David's Hoarding House".

This photo hardly
does the hoarding house
justice. The black garbage bags are full of cat urine clumps and cat feces.  In this dark room full of poop is a caged pigeon.  After the funeral I encouraged David Sr to set it free.... the timing was perfect.  His son dies, set bird free.

 I don't know how many cats he keeps in various rooms around the house.  He cleans the many litter boxes, removes the clumps of cat urine and feces, puts it in plastic bags and piles the bags into several mountains around the house.  I went to stay with him during this very busy and difficult week.  I tried to double bag some of the litter and at least get it outside.  Underneath the piles, the cat urine had eaten through the ceramic tiles.  Finally I went out and bought a couple scented candles, opened the window in the bedroom where I stayed.  I am presuming it was the noxious fumes that made me faint a few times.  Each time I picked myself up off whatever pile of boxes, a ladder, a tv in the hall, cat barf, cat hair, cat litter, etc, along with the blood pouring from a gash on my head.  As I said, I'm too exhausted to recount this story today - I'm sitting outside on the deck - it's hot and humid and the ashes from the neighbor's burning barrel are floating around, settling into the keys on my laptop and clogging up my brain.  David Jr was not into religion of any kind.  David Sr is a Mormon.  So I have to admit there was a bit of pissed offedness welling up inside me as I sat with David Jr's friends and family listening to how he was now enjoying the company of all his previously deceased relatives, heros, friends.

As I try to stumble down this passageway, I'm realizing I need to go back to the RV, take a pill, maybe smoke something, go back to sleep for awhile....  Basically, I went to a funeral.  Funerals make me giggle.  As I sat uncomfortably on that church pew, I watched David Jr's birth father who seemed to be a universe away from his comfort zone, so during the reception I sought him out, spoke with him for awhile and now I'm trying to find him on Facebook.  He just seemed like someone I want to know.  No, this isn't the story I meant to tell.  I'm going to bed.  But first, here's my pillow the morning after the fainting/head gashing.

Anyway.... back to bed.... I'll try to rewrite this later when I'm not so hot and grumpy and hurty and breathing in the neighbor's burnt trash.  I'm too lazy to even bother proofreading anymore.  No apologies.  May as well be real.

Except it's not ME

Myalgic encephalomyelitis is secondary, as is lupus and Sjogren's and the myriad other maladies for which I am providing sanctuary.  My own thoughts are that homo sapiens is just a fragile species.  We've only been around for about 150,000 years.  The Neanderthals hung around for about 400,000 years in the same form till we ran them right off the earth after interbreeding with them.  According to the company "23andme", I have about 2.5% Neanderthal DNA. Dinosaurs only hung out here for about 175 million years.  But the shrew - a truly remarkable mammal - survived the Cretaceous-Paleogene extinction, and survives today in various forms.  We evolved from this tiny mammal.  But we homo sapiens haven't been around very long.  And we now subsist on power grids and technology.  How long can that last?  We are a frail species indeed.  We can no longer adapt to our environment.  We force our environment to work for us.  Nature is a force not to be reckoned with.  50,000 years ago, I would have been left for the lions.  The group's safety and continued survival depended on leaving the weakest of us behind.  I am the poster child for weak and frail.  So why can't I die? Because there are no hungry saber tooth tigers where I live.  And I use the term, "where I live" loosely.  I'm alive.  And at present I'm lying in a cold RV.  Therefore I am living in an RV.  Last week I lived in a hotel.  And for one night I lived at David's Hoarding House but the stench and filth was too much so I went to Dawn's, knowing what a mistake it would be... and it was.  But for two nights I lived at Dawn's.  Now I live in an RV beside a lake that is drying up.  I never live anywhere long enough to put in a change of address.

Back to ME being secondary - this Thing is in my spine, and has been since the moment I hit the concrete on the ground floor of Stoltzfus' barn.  But in 40 years, with socialized health care, do you think I could get anyone to take a look at my spine?  We've done MRIs and CTs and motility tests and barium X-rays and tilt table tests and everything but a scan of my entire spine.  

I am so tired. So so tired.

My Sister

My sister

Her hair is blonde, wavy and soft
Well, I don't remember that -
I always thought it was brown
Dark brown
And long
And straight
(every now and then we bring out the envelope that contains her cut off pony tails from when she was 12)


Suave
Gracious
Enchanting she is.
I know
By the bunches of red roses
Flooding brandy glasses on both speakers.

She sings to me
The songs we used to sing
When I was ten
In that youthful world
Way back when…

She breaks my heart
With Vincent and Killing Me Softly
Till I am drunk
With admiration and longing
To be
Just
Like
Her.

Her name on the screen
In big letters and lights
For ALL THE CITY’S PLEASURE.

Oh, it’s no wonder
She lost count
Of all her beauty-seeking lovers.

Nurtured
In a life of horse dust and
Kittens and
Wheat fields and
Midnight crullers at Robin’s,

Yet exposed
To bloody fights
In the ring
And afterward it is appropriate to stand around tinkling the ice in our plastic cups,
A breed of existence I had not known before.

That’s my sister
The songstress
Up there playing with switches and dials and equalizer levels
And that’s Karm over there
He comes every night just to gaze at her
As I do.

Bitter cold Winnipeg
It bites and gnaws, unforgiving.
So let’s just stay at home
Tonight
And watch old Bogart films
On Roblin Boulevard
Where the ghost walks nightly, condemned eternally

What?! You mean you never heard of that?!

Rosebud, Roblin Blvd, Meryl and Marshall, horses and bloody boxing matches

I was 17 in this photo, with my kitten, Rosebud.  I know, I look 12, right?  I kept looking 12 till I hit 50, The era this photo brings from 36 earth years away, is exhaustion and being unable to sit up comfortably.  I remember having terrible menstruation pain and nausea, and bleeding half to death for about ten days each month.  I remember Meryl teaching me to eat once a day, whether it was spaghetti from a generic can or left-over hot fudge sauce from last night's hot fudge sauce with a little ice cream under it.  Sometimes we made cookie dough and ate most of the dough.  We went to the Fit Stop during the day, a gym where Meryl and her husband Marshall Quelch had free passes because, just by being themselves, they brought in  a great deal of business.  Marshall was a fairly famous athlete/football player and Judo champion.  The guy - my big brother - was/is amazing, even now at age 80.  His influence on my tender, naive 17 years is still apparent today.  Anyway, I digress, but with good reason - Marshall, living legend, will always be my big brother and I will always admire and love him.

 In this photo I am wearing Marshall's scruffy old bathrobe that wrapped around me about three times.  This ragged bathrobe is holds a great deal of emotional significance and I will no doubt get to that story another time.  It is probably morning - 11;00 a.m. was morning to me, although I could hear Meryl in the basement building stuff by 7:30 a.m.  She never wore out. Sometimes I would go to work with her - to whichever gig she was playing that week.  At only 17, I was illegal, but never got ID'ed.  I guess with make up, and wearing Meryl's homemade, but classy clothing   and high heels, I looked older than 12, and even may have passed for 18.  But considering Meryl was the entertainment, no one ever asked.  So between about 9 p.m. and 1 a.m. I sat and gazed at my sister, barely able to breathe in my new life of freedom - a strange combination of a hundred year old farmhouse with a dirt cellar, kittens everywhere, a St. Bernard, rodents in home made cages, horses, a falling apart barn, being able to wander seemingly endlessly over the prairies where I picked up that possibly Lyme-diseased tick who lived under the skin of my left buttock cheek till Meryl pulled it out, legs and all and we blew it up with a lighter.  Poor little guy.  Or lady.  I wouldn't do such a thing now!  Where was I?  Oh right.... the juxtaposition of living in a dirty old farmhouse and playing dress up every night and sometimes even being on stage with my sister trying to squawk  out a duo of some sort.  Pretty sure I always ruined it.  That, plus the boxing fights, front row, where you get blood and snot splashed all over you because you are Mr. Universe's sister-in-law.  (Okay, I'm not sure about the Mr. Universe thing.  He really was and is a big deal in the athletic world though!)  And afterward, we stand around, finely dressed, with plastic cups full of booze and ice.  Sometimes one of Meryl's duties was to sing the Canadian national anthem, pre-fight.  I never knew how to respond in these social situations.  I felt awkward and painfully bashful, but apparently I fooled a lot of people by smiling and just being related to the VIPs.  What I remember most was the physical discomfort, needing to lie down, sleep, or at least just not be around people, and certainly not in tight jeans and high heels.  Once at home, at Meryl and Marsh's rented farmhouse on Roblin Blvd, I'd retire to my bedroom and lie there aching.  Once, I went with a group of other young folk - from a church I think - to clean up a camp for the summer.  It was the summer Friday the 13th came out.  But I hadn't even been to my first movie in a movie theatre yet.  All I knew of movies were the Christmas films they'd show in the high school auditorium on Christmas eve, and all of us, moving toward the rear exits, single file, silent, embarrassed, because they'd turned off the Muppet movie when the Hare Krishna Muppet band dressed in their orange robes played a rocky tune completely out of sync with Prairie Bible Institute's odd code of morals. Odd indeed.  Having grown up there, I didn't really comprehend how odd it all was till my 40sC

Nothing has changed.  Not really.

So thing is, it can't have been the tick because I was already exhausted.  Before I flew the coop I was exhausted.  Food felt like poison even then.  After lunch, because I didn't have the discipline to eat only two or three bites, I'd return to classes, but be unable to sit up, and often, unable to stay awake.  It was this, the exhaustion, the physical discomfort, that shaped my social world.  Yes, my mother had a part in shaping my social world as well.  But as studies show, it is more our peers and peer environment that shapes our personality, along with the blueprints in our genes.  Our parents have very little to add after the 50% gene mix about nine months before we're born.

I had quit piano after going all the way through to Grade Ten Royal Conservatory of Toronto because my back and gut were too messed up and it just hurt too much to sit for an hour to practice, and my mother believed me.  I didn't really know how to practice then anyway.  Not until college in Grande Prairie at age 30 did I really learn how to practice. You memorize a piece right from the start, measure by measure.  It's the only way to learn to play properly and beautifully.  Problem with that method is, you need to be certain you've memorized it correctly.  At age 30, I would often practice for three hours despite the agony.  Why am I talking about practicing piano?  I guess because it's all there.  It's part of my story, the one I don't want.  The story I wish I didn't have in me to tell, or keep secret.  I just wish it was a very different story.  Don't get me wrong.  There are loads of beautiful moments to watch like vignettes of my soul's evolution even though I don't believe souls exist.  In fact, the reason they are such beautiful and even startling vignettes is because I had so little to enjoy.  Most of my life was an exercise in endurance.  I may still be breathing, but that doesn't mean I endured.

May 3, 2017 A Home

After being dumped off at the couchsurfing hosts' place, unable to speak or even move, I got onto Facebook and messaged the people who moved my things from Edmonton to Bragg Creek.  I wasn't too coherent, although I knew what I meant - it just wasn't coming out right.  But they got the gist of it and within minutes another ambulance had arrived.  At first I said no, I wasn't going again.  Nobody had listened because John had fed the doctors wrong (or irrelevant to this situation) information.  But the paramedics simply suggested, "well, how about you go and start fresh".  Good idea.  At this point, I was a little more alert than I had been the day before, but I still can't recall the ride to the hospital or much of what transpired in the next few hours.  Eventually I was given something for nausea, vertigo and sleep and disappeared for four hours.  By the way, I should mention that I hadn't yet discovered that John hadn't gone home.  We'd been planning to leave on the 28th, but he decided to bugger off on the 23rd... not home to Ottawa, but to Washington.  Yes, without me.  My sisters were confused and rightly pissed that he'd dumped me and had gone ahead to Washington.  It's OK.  After a few months of John, I pretty much know the guy cannot see or hear anything that doesn't benefit him directly.  I've healthily detached from that.  Can't expect anything from someone who can't do anything.  So it's alright.   But a little weird weird weird.

Jenn and Bruce, who had called for an ambulance the second time, invited me to come stay at their place on the lake - or what's left of Sandy Lake anyway.  I stay in their RV -  SO cozy!  I can honestly say that the pounding stopped for about three days.  I've been sleepy, but not painfully exhausted.... till today.  Everything hurts again.  There's that deep visceral pain that feels like everything inside is all red, contorted, both inflamed and shriveled.  I'm exhausted.  The torture is back on, Baby!

I am trying to think of a way of positively stating things that just aren't positive.  Any suggestions?  It's about people.  For the most part, homo sapiens is an empathetic species.  We help one another.  But then you come across some that fall outside that humanitarian cell and it's not just hard to describe - I don't want to have to describe them.  But there they are.  My sisters in law, for starters, just couldn't get past my idiosyncrasies - those "bizarre" behaviors that to me are survival mechanisms.  Being aloof, lying down a lot, not eating, etc.  It's just not acceptable to be sick.

I've a lot to catch up.... right now my eyes need to close.  They burn.  My cervical spine is degenerating - basically, it is decomposing inside me.  So any tissue still trying to stay attached to the cervical spine is in spasms.  Also, I can't see.  John took my glasses with him, and although I asked him to courier them to the address where I would be for 2 days, he didn't.  Give John another star on his chart of senior citizen moments.

April 29, 2017 How to Endure Torture

Yes.  It's April, 2017.  I've been reading literature about how to endure torture.  Give up hope.  Give up your sanity.   And remain aloof.  So I've been doing everything "right" for about three decades.  But that is supposing the torture will end at some point, either in death, or, although unlikely, in freedom.  Nothing is said about lifelong torture.  I realized recently that I'm not only aloof, but have become quite dissociative.  It is simply the survival instinct, which is a bitch, nevertheless, there it is.

Last week I was in the Foothills Hospital.  I couldn't speak, could barely move, and could hear people talking over me rather than listening to me. I was trying with all my might to scream "No! This is something different!  This is not about chronic issues!  Something happened!"   But no one would listen.  They heard only incoherence and nonsensical mumblings.  I suppose it's like being operated on when the anesthetic didn't take, but you're paralyzed and can't say anything.  They gave me a ketamine infusion which only made the pounding worse, but I was paralyzed so at least it gave me a bit of relief.

The jack hammering started worsening in November and continued to increase in its severity till it culminated in that floaty feeling from hypoxia when you feel like you're looking down from above, in and out of consciousness.  Although I am not at all afraid of death, it still scared me.  I guess I wanted to say goodbye.  So an ambulance arrived and next thing I know I'm under migraine inducing lights in a hospital trying desperately to shout.   So I didn't get any help and was sent home, paralyzed. "Home", being a couchsurfing host where I had been staying but had left the day before.  The young couple was sympathetic but they couldn't take care of me.  John lied to them, told them I was fine, left me like that and flew home to Ottawa (so he said anyway.... more on that later....).  Needless to say, I ended up back in the hospital after putting out an SOS on Facebook. This time they listened.  Eventually it was discovered that my kidneys are failing.  At last!  Something tangible!  I could almost laugh with utter joy!

Still, I am now homeless.   This is what happens when you're sick.  You're aloof out of self preservation so your friends drop away and forget you.  Eventually you find yourself with no place to live and no one to even ask for help.