Images 9/1

September. And I want the summer back.
a dinghy: blue & white. Once loved, once contentedly tied to its place on the shore. Cast out & drifting alone on a lake. A still lake. Mirroring darkness, light, sky and trees  & stars at night (probably), or perhaps the stars live deep in the lake and the sky reflects the stars. It doesn't matter.
A lake where loons call, dragon flies--iridescent blue--dart across the water. A lake where we kayaked out to the loons. They called and lifted their wings. We stopped, drifting, holding each other's paddles. Talked. And it was easy. The loons dove deep and long, resurfacing in unpredictable places.
The dinghy blue and white,  paint just a little scratched, its cut rope shredding, fingers spreading across the lake's surface.
A dinghy: shot full of holes.

Scaffolding II

In India, when buildings were built or repaired scaffolding consisted of bamboo poles tied together with twine, jute, probably, similar to baling twine. The buildings under construction were surrounded by imperfect squares, climbed by people wearing shorts with bare feet. It was quite remarkable, really, that these scaffoldings didn't slip, or collapse altogether. But then again, perhaps they did, for all the notice I made of them. After all, such accidents were, in a sense de rigueur.  "Sister," the servant says to me while I am eating my morning mango, "Sister, today, one bus accident. All dead." "What happened?" I ask. "One bus hit the wall. Everybody dead," he replies, his hand turning, fingers spiraling as if to say "and so it goes." And indeed it did. Indeed. Everybody dead. So, perhaps those scaffoldings did fall taking people with them.

How strange that seems, because scaffolding looks like such a fundamental structure, a structure that trusts that within in its temporary boundaries an enduring structure will be built. And yet, scaffolding will, when the building is completed, disappear. So, how interesting it is that as I watch a mind and a person dissolve, I envision the return to the beginning, that temporary structure--the scaffolding.

As Tom disappears, tearing down the past brick by brick, snatching the future and ripping the present to shreds, he becomes once again, the scaffolding with which he began. All so different from the man he was.

The difficult part is that his scaffolding was faulty, not only faulty, but so essentially flawed so rotten and diseased, chewed by termites, that while it looks intact, it is, in fact, dust. Step on those beams at your peril; they collapse, crisp and dry, leaving you waving your arms in free fall.

Ahhhh yes, but that is the family he grew up with, I begin to see, as I fall into unknown regions, feeling like each day is an archeological expedition of the mind. His is a family where a question about dinner turns into quicksand, the trap of a spider whose only goal is to suck the life out of her victims leaving a web bound shell as she moves onto the next source of nourishment. And that spider was, oh, yes, and is, his mother. A spider. An empty creature, existing only to prey and suck the life out of everyone around her so that she can realize some measure of existence. But she doesn't really exist, and can't, so there is always a void to be filled, and another victim needed to fill it. And thus is the scaffolding of his life. He has become his mother.

Last week I watched a spider in my window. A fly was caught in her web, buzzing and struggling, becoming more and more entangled with each wing beat. The spider danced down toward the fly, darting at it, moving away as it kicked its legs and became more entwined. Again and again the spider danced down, and again and again the fly fought its restraints, only to find that they became more secure with struggle and complaint. But still she taunted, that spider, pushing for total entrapment so she could fill herself. I imagined her laughing, her smile wide with the prospect of the fly's demise. And so it is with Tom's mother, and so it is with him. He stalks me, as he was taught, oh so well, and dances, and cajoles, and entraps with innocent sounding comments and then, grinning like a creepy ventriloquist's dummy, heads in for the kill, for the lonely pleasure of destruction. What they want, these empty creatures, is to fill themselves, leaving trophy shells entrapped in their webs, testimony to  only their hollowness and perceived triumph.

But the thing is, I won't go. I watch carefully for those rotten beams that look so sturdy and trust none of it. He is left to his scaffolding, but I am not climbing. Bricks are coming down one by one, the once-building a pile of rubble now, and his scaffolding teeters above and around it. But I am not taking a step; that scaffolding may fall, but I won't be on it. And certainly, most certainly, scaffolding does fall, but I am not going down with that mess, and I wonder if I will even notice when it goes, or who is taken with it. Deaths are easy, and scaffolding temporary. "All dead, sister, everyone dead."
Not me, though, not me. He's not going to take me down with him, even if I have to learn to stop beating my wings for a while.

Wrung Out

So here it is: Whatever I say is returned as something  I didn't even think, much less say. A whole world is endlessly constructed around me like an intricate web, or scaffolding, any refutation rejected outright. And with each piece I try to tear down reconstruction begins all over again. The same conversations are played over and over and over and any alternate version denied, and I am denied because I am told what I did what I thought and what I said. No matter what I do say I am told I said something completely different. I have been told things about the past that are complete fabrications about what the experience was, effectively dismantling the past brick by brick by brick, and when the dismantling is done the past is rebuilt and recounted in a way I don't recognize. The future I expected not long ago has been taken from me, but so has the past. And so I find small, concrete things, like a child's favorite stuffed animal and try to imbue those things with a memory I can go back to and hold on to. Literally.

It is hard enough to be the sole repository of memories, but when the one person who could and once did also remember reconstructs those memories into an unrecognizable fiction the very basis of the past becomes slippery and hard, if not impossible, to hold onto. This is an exhausting process, living with someone who has literally lost their mind. He thinks he is fine, that his thoughts are intact, that it is me who needs to be helped. Through most of it he sounds rational and calm, but the pieces don't fit, and the logic is faulty. At the end of these endless conversations in which all words enter a black box and come out as something else, and are irrefutable, I feel as if I have been wrung out, rolled over, flattened and plastered to the floor.

Not abandoned

I have not abandoned the blog. It has been a very long month or so, culminating, sort of, in a visit with the neurologist on Monday. In short, the PET scan confirmed the diagnosis of Frontal Temporal Dementia, and the doctor talked a bit about that. No treatment, no reversal, no slowing down, no idea of how far along this is, and no idea of what the prognosis or trajectory will be. Nice. Real definitive.
The month preceding this appointment was truly a house of mirrors, a month of shifting floors underfoot, unexpected pitfalls and traps. Very difficult, and will be described in subsequent posts. Living where another person constructs a reality for everyone around and keeps trying to draw them in with insistence and seeming logic is a mind bending experience. Keeping my own psychological ground is exhausting.
Signing off of this brief update to drive through a grey so very November day.

House of Mirrors I

I am posting this as I write it, because there are a few posts, maybe all in this one post, maybe in different ones. But consider it a draft and a work in progres.

 How to describe the indescribable? The totally unimaginable, unfathomable world of living with an insane person? I can't fathom it and yet I am living it. I walk into a house every day and don't know what it will look like when I walk in, what it will look like from minute to minute, and what part of anything is real. It is so disorienting that I feel completely off kilter; as if the floors are slanted, or not, as if the wall ahead may not really be a wall, but instead, a mirror, a fun house mirror in which I stare at my hand, longish fingers, slender, but reach that hand out yo meet the reflection. Hand reaching out to hand, but when the fingers meet the hand I see is short and square, wavey as if under water, or a different colour, or maybe not even a hand at all, but some sort of distorted claw, the foot of a raven, perhaps, or a three toed sloth, or maybe even something that is not appendage, such as a dandelion gone to seed. And then the mind does that torque thing, the thing that feels like a rope being twisted back and forth and turned inside out, making a two dimensional object into  three dimensions, three into four. These are the mental mechanics that occur when driving up a road and a car is coming straight on, and the mind flashes through all reasonable possibilities--I am on the wrong side of the road, the road is really narrow here, making sense in the reasonable world of what is not reasonable. And so it is, reach out, look in the mirror, look in the reflection of the reflection of the mirror, get lost in the reflections, but each reflection is different, so are they reflections at all? And which one is the real one, and the mind screams to hold on to what it knows is real, to what it knows is true, screams like an animal dying in the woods at night, grasping at anything, grabbing for substance, for affirmation, but where is affirmation to come from in a house of mirrors, and what is to be believed? Each image beckons, each is seductive, enticing one to grasp onto it, to trust, but then something happens, a flash of light, an almost undetected movement and uncertainty takes hold, thankfully, because to fall into those traps is perhaps to never get out. And that is annihilation.

Uncertainty

PET Scan Friday, Sept. 24th, follow up appointment November 16th--6 weeks. RU Kidding??? 6 weeks???

Note: I do not do well with uncertainty. Whatever there is, I like to know; I like to at least think ahead, even if things change. Thinking is doing. I don't like having what feels like a void surround me--if one can even be surrounded by a void--so the fact that the next appointment--the appointment at which information about some sort of something will be imparted--is 6 weeks away is excruciating....it is like this...
Life without boundaries is not a comfortable state.
droves of  leaves fall from trees
swirling in updrafts before giving over to the inevitability of gravity
dancers felled mid pirouette
they scatter on late year grass and gravel roads,
tribute spread before emperors.

Yet, I am completely unable to picture next fall.
(a year from now, so much can happen in a year)

the first snow, first hard frost, first tentative ice in the stock tank,
even the end of the day tomorrow are unimaginable.
no, not quite. they were once certain but are now obscured, and even assurance of the inevitable is unconjurable,
as if I lost the ability to see ahead or to even know that there is something ahead.It is like reaching out to feel a muslin curtain only to have it dissolve between finger tips and blow away. dust. dust so fine it can't even be felt.
looking out through water on a windshield in a heavy rainstorm
waves and tones of grey shot through with occasional flashes of red and yellow

fall was crisp last year,
the winter all blue and white and not too cold
good snow
full of laughter that continued into spring
a reality based in thinking that things seen were things known
(a year ago, so much can happen in a year)

And so, here I am now, waiting and waiting and waiting for what? For answers, for something that will tell me or at least hint at the length of this road. I want to know how long it will take for him to dissolve entirely, and how much of him is gone. I realize that will not be given as an absolute, but something is better than this absolutely nothing.
There are plans that must be made, things put in place. That can't happen without some sort of guide as to what lies ahead. At some point he is beside the point. Where there is little to nothing that can be done, and things will progress as they will, it is more about the rest of us than about him; we can change us, we cannot change him, or affect or alter his situation. That is why I need to know something.....so, Wednesday I called the neurologist's office and asked them if they could please give some information about the scan before the visit even if just an outline. The nurse called back quickly, and the doctor the next day. I was not here for the call, but at least there is something that will come rather soon. A much better feeling than seemingly relentless unknowing.