Researching the monsters

It was not light reading.

There are about seven different possible etiologies for these MRI results I got the other month.   One of the seven kills people--100%.  "You should see a neurologist...." is what the doctor said. But  after several years of interacting with brain injury patients, I have a deep regard for just how little neurologists can actually do.  The brain is still a vastly uncharted territory. Neurologists are like those sailors who sailed off with maps that had edges marked "Here be monsters." Neurology maps say "here be neurons."

So, because I was about to be between health care providers while I moved domiciles and work, I researched. The neurons and ganglia and all that good stuff in the cerebellar region regulate autonomic functions.   Autonomic functions are the ones that are, well, automatic, so to speak.  That is, they are bodily functions that cruise on autopilot...a really crucial, the plane will crash if they don't cruise autopilot. The autonomic functions are the signalling systems that ping and manage balance, blood pressure, elimination of wastes, swallowing, breathing and heartbeat. Nothing much.

And when MRI's show things amiss in this cerebellar region you know what can be known for sure?  Not much.  How often does one find that actually written in black and while about modern medicine?  The only way to diagnose what might produce this kind of MRI image is an expensive and largely inconclusive process of elimination.  They'll only finally and conclusively diagnose the causes of those shadow and light gradations at death. Really.  And you know what good a firm diagnosis does?  You guessed it --nada, zip, zero.  No current treatments other than "palliative."  No brain repair available.

Initially, I found this a bit freeing:  Well, okay, I'm not going to piss off an MD for going alternative on her or him because the traditionals have nothing to give me but bad news.  I mean really--no treatments, period.

So until I can coordinate all the contacts with health care that will launch my little craft upon this map limned with new mysteries, I  decided I would meander around in the shallows eyeballing the horizon and think deeply on monsters.  Or rather I would write as if I understood that we are all sailing on maps with the edges labeled  "monsters." Say how does that compass feel in hand, given all the sepia-toned scaly splashing on the periphery?

Maybe it was just a bad MRI.

But I thought I might well know the worst case scenario.  And you know what?  This is not something written up much.  Apparently no one wants to talk about the dying process much.  Not in any disease, it turns out, does one find an unflinching portrait of what is likely to happen when one abuts a monster.  The discussion I found was appallingly couched in how to prolong life...honestly. For example, I found a rather lengthy scholarly treatise on how to prevent patients from dying in their sleep. 

The biggest monster on my map takes out people in several ways.  They stop breathing in their sleep. Their hearts stop. They get such chronic urinary tract infections that the infections take them out. They stop eating to the point where they have to be tube fed and things go amiss with that.  I'm in favor of the stopping breathing in the sleep. And the paper I found discussed how to interrupt that peaceful process. But no one asked me. 

So I had a moody day after this research.  I sailed on a plane traveling halfway across the country. When it was time to land, the attendant came over the PA and what I heard was this:  "Your time suspended in the air is over, watch for falling baggage, don't stand too soon and thanks for this little jaunt.  It's over."  All of a sudden, I felt like the plane was life and it was time to disembark.  Me and my fellow shipmates.  Despite the monsters ravening at the edges of our maps, we were to gather our water bottles, power up our cell phones and leave in an orderly fashion. I felt tremendous tenderness for those around me. We tried to smile and be kind while moving through mundane and tedious logistics:  Wait, wait, jostle, be polite even while feeling urgent, remember stuff, move on, move out, face what I don't know, face what is next....which is what none of us really knows.