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My Final Refuge....


Not that many years ago, my playground, my domain, my "world" was quite literally, the world. Traveled far and wide, spoke more than one language, had plenty of exotic food and beer. Lots of beer.

Then the LBD starting kicking my tires and a year later, my world shrank until it was basically my "town" of Las Vegas...


Then the dementia took away my wheels and I was not only content with that, I grew to crave that smaller world, or perhaps smaller scope of the big world is more to the truth.

Then about 18 months ago, my world shrank even further. Where it was not long ago the whole town, now its the very immediate neighborhood....and mostly my house....


A few plateaus later and by this summer, my world consisted of little more than what I could see from where I sat.....



Everything I needed (or could conceive of needing) was right here: meds (my magic garden), movies and TV (my VOD system I built) and plenty of video games (used to work for Sony so have PSVita, 2, 3 and 4 here to play with). My days are as full as they can be right now. Boring to a normal person, this is a full-enough, interesting-enough life for me.


Everything that pushed me each step of this journey was preceded by a general worsening of my condition, making understanding, let alone caring about things a world away an impossibility. It also seems to coincide when the real chaotic world encroaches on my little areas of refuge.  I am forced to retreat a little further.

And now we have arrived at the point of the story as they say....I told you all of that so that this part may make sense. In a way I hope it makes sense to nobody, because if someones dealing with this, it probably scares them too and don't need any of my help.

Of late, I have been finding it disturbingly easy and natural-feeling to retreat into the confines of my own mind. This is not the same as just thinking about stuff because with this, I actually feel a sense of protection or self-defense from the action causing the need in the first place. The feeling of protection is so real and palpable that by intent or not, within a few weeks I found that I was able to slip into this place with more and more ease, and the feeling it provided never slackened. Still hasn't.


Today was an excellent example, I was in for a lot of medical testing today and I am just getting over a nasty flu bug so I wasn't thrilled about being there in the first place. I have a pretty good sense that I have been given the placebo in this study and so its taking will-power to do stuff when I don't feel my best.

But I am there. Hospital setting, so air-conditioned. Hospital in the middle of the desert in the middle of the summer: refrigerated as shit. And Jeff is in flip-flops, t-shirt and shorts. And I was so ready to be anywhere but there and I could feel myself becoming shorter and shorter with those around me. Some were in fact responsible for my current pain but most were not.

So, almost as a reflex, when I would not handle the place any longer I seamlessly slipped into myself, retreating into my own head. And such a feeling of relief! I honestly felt as protected by this action as a doctor in a danger zone feels about a hazmat suit. Crappy analogy but its what I have. This feels as real to my mind as a bullet-proof vest might feel to my physical chest.

I can sort of notice things going on around me but it takes a tremendous effort to do so.  Takes alot of interest in things around me to put the effort forth as well and you know what? At that moment, the outside world is not only not interesting at all, it is in no WAY as interesting as the time I have inside my head.

Still it worries me some, because not only is this becoming more natural for me to do than wiping my own ass (I know, I know, TMI), this also mimics whats often represented as the "house plant stage" of Alzheimers.

To me this means I could be getting closer to the end-stage of this, the dreaded "houseplant" stage. And yes, that frightens me and its a guilty fright because when there, when I *need* to be there, it feels so damned...good...comforting....that feeling you have just out of a shower and you are wrapped in a big warm towel, you pull it tighter to you not just to keep warm but because it feels so good at that moment.

Now here is the kicker: if all that crap is true, then maybe the rest is, kinda like what I was speculating about in the Undiscovered Country thing, that dementia folks in house-plant status only look that way from the outside, maybe the party really IS in their heads!


Update: I cross-posted this to another site w/o graphics capabilities so I hacked out a fast YouTube video encapsulating much of this....feel free to laugh, I spent like 4 minutes on it....

Update: this is a day or so later. Tonight is the ultimate test so far. Right now Beth is enjoying Spiderman: Far From Home on the wide-screen. Have had the title for a week or more but haven't been able to mentally deal with absorbing a totally new movie, I just haven't been able to and still can't. Yet tonight when I asked her what she wanted to watch, I could tell she had had enough reruns, at least for a night when she picked this. So....when I could put off playing it no longer, I started it and then intentionally dropped into Neverland. One flaw that I haven't worked out yet is the problem of time. I can drop into this world but my sense of time is so warped that I have no feel for when to dial back into reality again...so I get there a while....its great from the perspective I am completely oblivious to everything around me, its just me hanging out where its comfortable and then I start to wonder: has it been too long? How long has it been after all? So then I pop back, see its been 10-20 minutes, take a hit on the J and slide back out again.



Lather, rinse, repeat. So by now its the last 30 minutes of the movie, I really haven't seen more than about 45 seconds of it involuntarily so far, so good as the saying goes.  But trying to do it for a specific amount of time remains a problem. But it works on command.



One other little update: the responses to this have been interesting indeed. Some folks doubt, some folks see it as giving up, some folks totally get it (patients) and then I had one person surprise the hell out of me by saying that it was great that I could do it and if he personally had a place like that he might not come back either, so if I decided to stay, he understood and was good with it. And some folks really got hope from this. All over the place.



J.


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