What lies between the death of the personality and the death of the body? I am about to find out...
This in many ways is the culmination of everything I have written on this site. There is no other way to put it: I found myself today writing an obituary...for me. Well not exactly ME but rather for the person known as Jeff Cobb. If you look in my wallet at my ID card or NV marijuana card, they will say "Jeff Cobb" on them and when mail comes to my house in the name of Jeff Cobb, I open it.
Jeff Cobb was born in Kalamazoo Michigan in 1960-something, just in time for the hippy era. He grew up an only child for the most part so learned about talking from reading books, developed a habit of self-teaching skills he thought he needed or just plain geeked out on. Thus when other kids were out in the 70s playing ball etc, he was in back of his house making lock picks and fiddling with very elementary early computing devices. The arc furnace he built in the basement of his parents home was one such thing done purely for amusement. He watched too much MASH and other things back in the 70s and with an urge to travel left Kalamazoo for good after high school to join the Army, see the world. The parents were just left pissed off, called the recruiter "the hijacker."
He learned alot during two hitches, traveled around the world, lived behind the Berlin Wall for years and finally got out of the Army in the 80s technically armed for the coming computer industry that was just getting going. Long story short, he taught himself engineering, married another geek like himself and together they moved all over the US working gigs and having as much fun as a pair of geeks with too much time on their hands can have. The dot-com boom worked to his benefit because even though he never went to college, he knew computers and programmer like breathing and so got labelled as a "Senior Engineer" early on and from there things just went up.
He was at Sony in San Francisco working on PS3, XPeria phone and more when the Lewy Body Dementia first started with some Parkinsons symptoms and cognitive slips as well. Thankfully the folks at Sony knew what he was normally like and so realized something was wrong and forced him into disability to find what was wrong. That became long term disability which became permanent with the diagnosis that his train wasn't stopping at the same state anymore. Last time anyone has seen or heard from Jeff, he was growing medical cannabis in Las Vegas while getting treatment, when he wasn't in his star glider cruising at 15,000 feet above sanity.
I write this obit not because he is dead, rather at this point I am the last person to know him at this level.
That said, the person known as Jeff Cobb ceased to exist not that long ago. It wasn't an overnight process; indeed while the bigger changes happened about then, its something that has been in progress since at least 2012 or so.
While this is true, if you tried to speak to me as if I were Jeff Cobb of 2018 even, you may not recognize who speaks to you...and there is an even chance the speaker won't know you all that well either. Why now? Well, I am weary. I have moved beyond the state of faking to be sane, normal, whatever and now I have reached the point that faking being "Jeff Cobb" is almost too much in a normal day. Not everything is different, this isn't like the Star Trek mirror universe or anything, I just reach for different foods to eat, things to see, things to play, things to do, things to care about. Most of these have changed, some in big ways, some in small. Two years ago I could not get enough spice in my food, always kept bags of dried chili peppers on-hand when cooking...now can't stand them. Same with many so-called favorite meals, TV shows, movies, games, etc...
The reason is the same as for any progressive dementia; as the protein deposits damage random parts of the brain. This is not news; where this got surprising even though it should have surprised nobody is that the so-called "symptoms" of dementia are merely the observable results of that brain damage: faulty speech, memory, executive function and more are the easier things to detect. What happens right along side of these showy symptoms are the memories of "us", what informs us of what we like, what we dislike, what we actively hate, what we love more than life.
Here is the messed up part: all of the so-called "dementia" symptoms are those that can be observed, measured and quantified. You act and do stuff outside the norm. The rest of it however goes completely unnoticed because you look no different and aside from likes and dislikes, you seem no different. Sadly that means to them, nothing is different.
All of this reprogramming results in two interrelated and inescapable results:
1. There comes a point where you are so reconfigured that your actions and thoughts no longer resemble the person that you were. Considering what actually happens here, I label this something I stole from science fiction stories and call it the "Death of Personality." I am not dead, yet who I was is gone from this earth never to return. What would you call it?
2. The other half though is that while you are not who you were, you are not dead yet and as long as the new emerging personality isn't that of a carrot, you will still be a person, just someone new. Hey I will take being some new over someone dead every day of the week and twice on Sundays.
However this period is a curiosity because people who have gone through it before me tend to be non-verbal or (from your POV) non-sensical. In short, the folks who know the answer to what happens there ain't talkin. And thats leaves us coming after them in the same fucked up boat they were, cruising into this with no clue what to expect, how to prepare or how to fight back. Nothing. Up to the point of death of personality, folks have enough communication skills to verbalize whats going on. Past that though....here there be dragons. And I am about the find out what happens next.
Most caregivers and doctors (the folks who are supposed to "know") observe you and if things look like you from the outside (your words and actions) they consider the status to be quo, things are just dandy. Its when you really change they tend to freak out....until then, its like the frog in the slowly boiling pot of water.
Let me give you a simple analogy to illustrate why that is fine in theory but crap in practice: Say for example you grew up in a home, lived there for 18 years, went to college, got job far, far away, raised a family.
Some 15 years later you go home only to find that your parents sold years ago. The new owners are sympathetic and let you in to explain things. It is here that you look around and while the walls are the same, the carpet is new, the wallpaper is different, the furniture is different and as a matter of fact, the more you look the more you see how very different this house is. It definitely is no longer the house that you knew even if you occasionally got feelings of nostalgia from being there.
So the house would seem no different from the outside yet...
...the house would seem normal to those who currently dwell there yet...
...the house would seem almost hauntingly alien to you, and the longer you stayed the stranger it might get.
This is how things are when your personality gets reprogrammed by dementia. So far, the analogy seems to work on several levels and not just because of the above either. Like this analogy, things seem *fine* from the inside and in fact while this used to be your home, you are in point of fact the stranger here.
The warm feelings you hoped for visiting the house not only wouldn't happen, they are even more unlikely to happen with each passing day.
Another common theme is this: when you stepped into the house and saw what to your eyes seemed like odd decor, decor that didn't seem to "belong"...and as wrong and frankly fucked up the decor seemed to you, naturally to the current residents the same decor seems perfect.
In the end, it just isn't your home anymore, it is someone elses "house."
The more I think about it, the more that I realize the progressive dementia is very very much like that...
Now to be fair, I am reasonably certain that once I do cruise into this period and become more ...comfortable there I will probably be able to enter stuff here less and less. Even if I do, I guess its not really me.
...a bit later...
So what exactly does lie between the death of personality and the physical death of the brain? I really have no clue, although like millions before me, I have my seat on the train, my ticket punched....I am of two minds on this, which is a skechy shttps://youtu.be/dxRyZhX-wtQituation for someone with less that a single working brain.
First, the pragmatist says that while I don't really know whats coming, it stands a good chance of being a continuation of what is happening now as I stand on the cusp of this final leg of the journey into madness. The "world" within my own mind is already a more comfortable environment to exist within than "real life" or whatever label you stick on it. Not knowing whats coming I cannot profess to having any plan what to do once I am totally there for good....but odds are good it will take little effort on my part and so even if worst comes to worst, I won't spend my last conscious time on this planet working my ass off. Fine with me, basically a lazy git at heart anyway. Sloth hath its privileges and when your mind creates your entire reality, you are King Shit buddy and can set any labor laws you like.
Secondly though the idea of passively traversing that sub-reality may be relaxing, its still not me and I try to interact with my environment...I already have to an extent to my retirement cottage...this one though I just don't know how to prepare....however something I figured out recently kind of set me back on my heels...I always felt I could interact with this other "realm" to a greater extent but frequently failed to do so and I was disheartened for a long time about that until I stepped back and saw what was happening:
It was costing me SO MUCH mental and physical energy trying to deal with this reality, pretending to be sane, pretending I am still me, just lots and lots of tap-dancing that, at the end of the day or whenever I appoached these other worlds, I do so at a point of exhaustion. They can be cool, there can be things to do there, what you bring with you so to speak....but at the same time, bring nothing and you can relax like you never have in your so-called "healthy" life. Rejunenating like a trip to the Hawaiian islands for a week...so if you just put in a 12-hour day at work, you get home and see two things: a pile of logs and an axe for chopping them into firewood OR an easy chair with a beer and TV or joint....well the choice is usually simple at that moment.
Howver....the same thing then would be true that once I no longer have to (frankly) waste energy here pretending, there is no telling what I can accomplish there and guess what? I will have the rest of my life in order to get it done.....sounds like maybe a plan methinks....
See ya there!