Scaffolding

Just short--There is something interesting about dealing with someone--on a daily basis--who is mentally ill. The convolutions are so inexplicit; where there appears to be reason none exists, and the pitfalls are many. When I consider this, stepping away from it, I find that what is faulty is what I refer to as the scaffolding, that inner or outer mental framework that allows the rest of the structure to be built. If that is off kilter, or placed on an unstable ground then what is built inside it or around it will be similarly skewed. But then, it all looks so stable until one takes a step...more on these thoughts later.

Progress? Accomplishment? Me?

It is a hard road from saying, "I did my best," to believing it and letting it rest. But I think, at least for this moment, I am there. For so long Tom has been going on tirades, telling me all of the ways I failed, and failed him. For a long time I looked at him and saw how terribly unhappy he was, not knowing he had bvFTD (Behavioral Variant Frontal Temporal Dementia), thinking he was either a jerk or depressed, and wondered why, when I had tried so hard, had put so much into this marriage and into him, he chose to be unhappy. Why, I wondered with great hurt, was he not happy and so terribly unhappy? When he accused and told me all of the things I had "said" and "did not do," and "did do" I literally screamed that was not the case, screaming to assert that I do exist, that I did try, and that I was good to him. When talking is not heard screaming is the only way to hold onto some small scrap of self. But I hate it. And I should not have to do it. My children tell me I was very good to Tom, that I still am, and that I have gone far, far beyond what many, or perhaps even most people would do; that I have put up with way more than necessary and more than many others would. And yet, I couldn't find it in myself to know that. There were angles and splinters of doubt, and thus the scream, the "NO, NOT ME, THAT IS NOT WHAT I DID OR DIDN'T." The scream of self preservation. But tonight, when he started his onslaught I said I could not do this. He persisted, he pursued. I kept saying, "We have talked about this; I am sorry you feel that way; I can't do this every day; I can't let you talk to me like this," and when I could say no more I went out and sat in the car. I sat for just a few minutes, and started inside. "I will leave," he said, shaking fingers and voice at me. Admonishing--my fault again. I stood in the light on the porch, watched him drive away, then walked inside and said, "I did my best." I did. And while I feel sad, I don't feel bad. I know I did my best. I know it. This is not about me. I know that too. Know. Know it. And feel at peace. For now  anyway. Sad, but at peace. And that is progress, an accomplishment. For me.
And I know I will save myself.

Zombies and the wrong plot

There are some very funny things that happen living among the indigenous peoples here in the NEK, but an article in the local paper yesterday, front-page-above-the-fold no less, is one of the best stories I've seen in a while.

Since the Calwreck does not permit full access to articles without a subscription, yes, you heard me right there, subscription needed! I give a synopsis below. What good is an online subscription to the many of us who buy the paper for fire starting anyway?

In Sutton, a town north of me, a town that as I recall is so small that the steeple on the church does not have a light, a family buried the cremains of a relative in the wrong plot. The family, it seems, wanted to bypass the $100 charge to the sexton for burial, so they performed a do-it-themself-job. Like many such jobs, all did not go according to specs. DIY's are the reason for Home Depot and Lowes, and yes, I am aware of this, but I don't think they have a burial section in their stores, much less burial experts on hand to give advice. And so, things went wrong. The cremains, fortunately in an urn, were buried in the wrong plot.

Although the burial was in October the situation came to light just recently, and was made public at a Select Board meeting this past week during a meeting to discuss snow plows. It seems that someone casually told the sexton they were sorry they had not been able to attend the burial in October, whereupon the sexton said she was unaware of the burial. Yikes! The cat was out of the bag, or perhaps the urn.

The Select Board--erroneously? unjustifiably?-- took responsibility for rectifying the situation. And perhaps they should have, because, it seems, they have experience with burial problems in Sutton. An unspecified  time ago a casket was not buried deep enough to withstand the vagaries of frost and it surfaced. The article incorrectly says,  "there was a burial that wasn't deep enough and it was coming up through the surface." Sorry Calwreck, the burial was not buried, and the burial did not come up through the surface. Edit, puh-leese!

Nevertheless, Select Persons  (SP's) Spencer and Solinsky were concerned then that Sutton would be over run with zombies. And, so I posit, SP's Spencer and Solinsky, that perhaps, as in any good horror film or book, Sutton was over run with zombies, and continues to be so even under your watch. After all, as players in the situation you would not know. We consumers of the horror genre do know, however, and we watch, holding our breath and biting our nails, as events like the wrong plot urn burial unfold, knowing for sure that The Truth and Disaster lie ahead. Because, Sp's and other officials, you do not know who among you is a zombie. You do not even know if you are zombies.

Zombie behavior is a fairly good clue to zombie-ness, however, and the SP's are exhibiting extreme zombie behavior in regard to the wrong plot conundrum. There is a simple solution: get the family to dig up the urn--unless they want to pay the sexton this time & if the sexton does un-burials as well as burials--and bury it in the right plot. The one next door if I understand correctly. After all, it was an honest mistake. Take a ride through any suburban neighborhood in America and there are acres of houses that all look alike. Anyone could go into, and perhaps even move into, the wrong one. In such cases the wrong occupant would be informed of their error, pack up their stuff and go to the correct domicile. Clearly this is what happened in Sutton, minus the easy solution.

Instead, Sutton's SP's are investigating the correct "protocols" through the Secretary of State's office, even though protocol was not followed in the urn burial to begin with. They are waiting for answers, but, they say, they do not want to wait too long, in case the rightful occupant should require the plot. Oh, yes, zombie behavior--look for protocol when a human solution would do just fine. All that just to appear human. But how do you know, SP's that the Secretary of State is not a zombie too? Those are the things that happen.

Just dig up and rebury the urn. That's all. Think of the benefits. No need for packing, and those who missed the first burial can come to the second one. Just make sure the hole is deep enough, and do it soon so the real owner of that plot doesn't come a knockin'.

And such is life among the indigenous people (zombies?).

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.

Words, scary words, words that need to be said

INSANITY. MADNESS.

These are words that make people flinch, shy away, divert their eyes, and say "but....don't you think....everyone sometimes...lots of people..."
But these are words that need to be said. In the saying, if there is enough of it, the fear is reduced, the mystery, black and white pictures of people chained to walls, hair long and greasy, hanging in hanks, the sounds of screaming, open distorted mouths, archaic machines, cold baths. Sybil. Horror films. Places none of us want to visit. There is no colour there, just dusty shafts of light, cold concrete, and the screams, the echos, the Nurse Ratchetts, and all of those people who are flawed, and have gone wrong, so wrong that we cannot bear to even imagine it. For these are minds, after all, that have taken a wrong turn, broken. And how do we know that maybe each of us, each one of us won't fall into that pit. Ah yes, The Pit and the Pendulum, The Snake Pit. The pit of maddness, of mental labryinths that we cannot escape. What is there to save us from that fate? And so we look away, and we say, "yes, but...."
Yes, but...it may be your neighbor who is living with a person, perhaps a person they once knew and loved, who has gone, frankly, quite mad. And the problem of the mad, of the insane, is that, yes, just as we all fear, they have an amazing need to take others with them, and are quite good, particularly if they are truly insane, at doing so. So, the trick is to not go down into that pit, to not trip, to not begin to think that the world the insane person constructs, however reasonable it seems (even if distasteful or abhorrent), is real, and to not think that is a world you belong in.

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.