On Things That Shouldn't Happen

Someone I know -- or rather, knew -- died recently. He was in his nineties, an elder relative of my partner, and my only acquaintance with him was through a handful of random family get-togethers. For privacy reasons I will refer to him as "R".

Anyway, two things stand out to me in remembering R. One was the way he defied stereotypes about older people. Not that this was really any sort of a shock -- it was just neat, I thought, the way he would be sitting quietly at the dinner table eating his soup, and then something would come up in conversation that compelled a response not many present would have expected from "someone that age".

Memorably I recall an occasion when some other person at the table was going on about some factoid they couldn't remember the details of (related to football or American history or something along those lines) and R exasperatedly piped up with, "Well why don't you just go look it up on the Internet?"

The other thing I remember about R is the way he was failed by the medical system ostensibly meant to keep him alive. Yes, people die. Yes, all of us are vulnerable to all sorts of fatal errors whether in our own biology or in the whims of happenstance and accident.

But my whole outlook on longevity has always been rooted in the acknowledgment that, well, there's no reason to rush things, and every reason to make sure people of all ages have access to appropriate life-saving medical care.

In some cases that means we need to work on developing resources which don't yet exist. This is where research comes in, and funding for said research, and so on.

However, no matter how much research is done, and no matter what resources exist now or in the future, there is always going to also be a need for attitudes to reflect proper ethics. Without this part of the equation, no amount of machinery or medicine will assure people don't fall prey to negligence, ignorance, malice, indifference, or any of the other forces that still (despite all humanity's positive accomplishments) kill as surely as any weapon.

And what happened to R in his last few weeks of life was not informed by proper ethics. Again, for privacy reasons I'm leaving out details, but suffice to say that there was a lot of poor communication between doctors and other folks involved. There was overmedication. There was wrong medication. There was dismissal of R's opinions and comments on the situation.

And R didn't want to die, not then, not like that. But he did, and it was no time of peace and letting-go, that's for sure. It would discredit his memory to romanticize what happened and that is part of why I am writing this -- to contribute in some way to maintaining the reality of what did happen.

The fact that lots of people die before reaching their 90s makes it no less of a priority to take it seriously when someone in their 90s is being ignored, medically mistreated, or anything along those lines. I am sure R had no illusions that he would magically become immortal via being sufficiently peeved at the very notion of death, but seriously, anyone who tries to placate survivors in situations like this with comments like "oh, it was just his time" or "he was old" really isn't helping the situation.

At this point in my life I would not consider myself to be terrified of death, per se. My main feeling about it is that it would comprise a really obnoxious interruption, hence it's more something I am annoyed by than afraid of, if that makes any sense. And I'm certainly annoyed enough by it to want to stave it off for as long as possible, not just for myself but for my parents, living grandparents, neighbors, cats, etc.

I don't know how successful I will be at this or what kind of a contribution I can make on a physical level -- it depends on how my future career path ends up looking, among other things. But for the moment, at least, I can write. For whatever it's worth. Because the idea of being in a situation like R's definitely terrifies me. The way he was treated in hospital. The way so much was disregarded or simply presumed to be part and parcel of his being "old". And so on.

That shouldn't be acceptable in any civilized society, anywhere, anytime.

Anyway, if nothing else I hope this bit of text stands as an acknowledgment of R, who I didn't know nearly as well or for as long as I'd have liked, and who will always stand out in my mind as someone who, through everything, maintained a sense of the ongoing and irrepressible wonderfulness of existence. It is beyond too bad that he isn't here to express that himself anymore.

On Finding A Space

This is just a bit of "something I've learned" I figure might potentially come in handy for others on the autistic spectrum (or who are otherwise neurologically unusual in some way relevant to chaotic and/or crowded situations).

Anyway, one of my biggest difficulties is in dealing with any sort of crowded or noisy environment. I basically get extremely disoriented and unable to function well in terms of, well, anything from speech to walking without banging into things and people.

If things get really bad in this regard, I can end up practically incoherent and need someone else to lead me out of the situation, but thankfully I have learned a lot over the past few years such that I am often able to avoid getting to that point in the first place!

Of course one major strategy is just to avoid chaos and crowds, period. I already do this to the greatest extent I can, because I now know better than to presume it is going to be feasible for me to go to the store on a day when it's liable to be busy. But I do sometimes like to go out to eat in restaurants, or visit with people I like (of which there are a few these days), or see a musical or other performance.

And while this is always going to be taxing in some regard, I have found that these activities are a lot more manageable now I've figured out a few things.

Namely, in addition to timing my adventures such that I'm unlikely to run into a horde of seething masses, I have figured out that I can actually maintain some semblance of coherence in situations with some degree of crowdedness or noise by finding a space and then "sticking to it" throughout the event.

Basically it seems like the main thing that gets me in people-heavy situations is the sheer amount of incoming sensory and perceptual data. I don't seem to "filter" a lot of it out, which means that on the one (good) hand I might tend to notice neat details and patterns in my environment, but on the other hand, my processing gets bogged way down.

(That is of course a subjective and not necessarily a scientific description, but I am coming from a practical standpoint here which I hope is understood as such.)

So, what I've found really helps me is to (upon entering an environment of the sort under discussion here) sort of "stake out" a place in the room, building, or general area where:

- I am not right in the middle of people (meaning at least one side of me is going to be facing a wall, or a fence, or other thing that isn't going to be moving as milling humans are wont to do). E.g., in a restaurant I prefer tables along the back or sides of the place.

- I have enough space such that I can sit comfortably without bumping up against or brushing any other people. This actually isn't a huge amount of space -- it can be, for instance, a two foot radius circle around a single chair -- but I've found that it's never good to assume I will just "have" this without actively allocating or arranging it.

- I have a good vantage point from which to view the "goings on" in the room. This is important both for the sake of being able to scan and take in all the necessary environmental data, but to assure I can see/hear enough of what's going on to appreciate the reason I showed up in the first place.

- I have "escape routes" leading to restrooms, exits, etc. E.g., if I go to the movie theatre I always try and sit at the end of a row next to the wall or aisle, and right above that horizontal walkway area that some theatres have partway down the sea of seats.

Seriously, this may sound fairly "basic", but just paying attention to these things more over the past few years has made way more interesting things possible for me to attend.

As for how to make sure I can actually attend the occasional outing successfully, I find the following useful:

- Finding out how many people are likely to be present.

- Finding out what the layout of a venue is.

(i.e., if it's a restaurant, information on seating or even photos might be available online, or you can possibly get data from someone who has been to the venue before)

- Asking (or asking on behalf of, if you are the parent/sibling/etc. of a disabled person who cannot ask themselves) if there will be an "escape room" or space you or the person in question can go to if things get too noisy or overwhelming.

(This is something people who know me well now actually tend to volunteer information about, for which I count myself incredibly lucky!)

- Packing my "supplies" ahead of time.

(I carry an Army surplus bag as a purse because it has a ton of pockets, and in those pockets I normally have earplugs, iPod, headphones, pens, paper, etc. Dressing in layers is also generally good as that way I have a coat or something heavy which is handy for sensory reasons. A book is also great for blocking out ambient "stuff", though lately I've been really appreciating ebooks on the iPod Touch for their portability!)

- Making sure I have a ride home that will leave when I need to.

(As a non-driver it can be very tempting at times to car-pool with random people who offer rides -- but I always have to think about the fact that sometimes these people will want to stay longer than me wherever it is we're going, and factor that into my transportation plan.)

There are probably other things I could list here but I will keep this from getting overly long and stop here. Hopefully some of this is useful to someone!

Busy, Tired, and Oh Yeah, Kittens

I've got a number of half-finished drafts in my text folder waiting to turn into blog posts, but lately just haven't been up to posting anything really substantial. But I am still here and will definitely be working on getting those posts publishable.

For now, though, I leave you with a picture of my cats: