I find I have a lot to learn about my conditions. Most of all, it seems there is a lot to be learned about how to live with having Asperger Syndrome in a world and society made up of mostly normal people… or “neurotypicals“.
I have already found that this thing called a “Sensory Diet“, and whilst sounding incredibly odd, it is based on sound facts and works wonders in understanding things, the world, yourself, stresses, etc., so much better. It turns out that in my life before this, I used to do quite a lot of this intuitively. But after…? Well… It is after we have a problem with.
I recently read this blog regarding autism and fatigue. The story of the writer, her experiences, her thoughts – all of it – almost entirely mirrors my own experiences at the same age… apart from one thing. I had no idea I was an “Aspie“. In the 30 years I existed before all this happened – before “all hell broke loose” (as I feel it did) – I didn’t know what was “wrong” with me. But I did find out things that helped. As it turns out, in posh clinical terms, it was called a “Sensory Diet”. Who knew…? I certainly didn’t – and even then, I only just found out about this thing now, and it’s been nearly 2 years since I was diagnosed.
I’d say someone should have mentioned it… but I saw absolutely no one about this, ever – so it’s not like there was anyone there to point these things out. I’ve had to find all these things out on my own, so it’s rather a slow process.
Anyway… the point of this that before I was quite intuitively working things out that were helping me cope with living on a planet that was entirely alien to me. Now Afterwards none of these actually exist – and for one simple reason. I – very effectively and almost literally – have no memory. Or more accurately, access to my memory. Henceforth, I do not remember whatsoever what I used to do or how I used to do it, unless something somehow prompts these faded and shadowed flashbacks of my old existence. The pills I take seem to have seen to most of it, the rest comes from shutdown due to excessive anxiety and fight-or-flight responses.
So whatever it was I used to do, I not only do I have no idea of them, but I am so terrified of this other new planet I have somehow landed on – one that is once again a complete stranger to me – I cannot make up new ones.
Before, I spent years and years reading, watching, learning, absorbing how the “normal” (sorry – “neurotypical”) world worked. I figured out patterns, behaviours, distinct ways of “getting on”, for “passing”, basically for copying and mimicking them. Understanding them. Well, as much as I could, anyway. I never truly will, but I get a lot on an academic, intellectual level. Or, at least, I used to. Not so much anymore.
But now it seems all that information is lost – perhaps not forever; perhaps it’s behind new Admin access or Firewalls – and whatever the reason, it’s not available.
My life is segmented forever into Before and After, now. No matter what happens, nothing will be the same as it was again… and this experience will scar me, affect me, haunt me, and drive me forever more.
Before – even before I knew what I was, what planet I was from (“Planet A“… * cheeky grin *), I used to manage to do things that helped me just get on. Cope with the weird. And life, people, circumstances and their behaviour was very weird. After, there is nothing left in that little memory cupboard for me to recapture it.
So, circling, returning to the point… The blog under discussion is about Asperger’s and fatigue. It’s not something we think of – it probably comes naturally to us to just process the crap out of things without even cognitively assessing just what it does to us as well as for us.
It doesn’t just help us, it exhausts us. This is because we most certainly – and quite effectively – work the world out with just our minds, because on this planet we really have no instincts. We ergo learn different coping mechanisms in dealing with it all, in trying to understand and blend in. I find this existence an exhaustive roller-coaster hamster wheel of balancing acts. Our brains go hell-for-leather and nineteen-to-the-dozen, always at excruciatingly high processing speeds and levels, trying to cope with the world around us whilst living in it. It is why we tend to do exceptionally well at thing that involve precision and detail – we see things in a moment that people sometimes don’t see at all, and immediately catch onto the things that are out of place. Our processing power, as well as our own natural instincts (which seem to be coronary to this world), enable us to do this without much bother.
In fact, writing this quite reminds me of probably being likened to a high-functioning super-quantum real AI trying to get on in the world (and it is in this fashion that enables me to identify with the character of EDI in BioWare’s immensely successful and award-winning Mass Effect games, more than any other character in most games I have played – with her I actually do understand what empathy really could be…). Your entire existence is in your brain, your processor and memory cores. Everyone else’s is based on instinct (but then this is their native planet, so what else is there to expect…).
To then have all this computing power, this memory core, this enormous mass storage of space filled with copious amounts of data, all wiped clean – or at least transferred out to a storage partition you have been locked out of… Starting again is not easy. Without the things I already knew before, I have to work all the harder to understand this world again. From scratch.
This is something I’ve not had to do since I was an infant. Thus is it any wonder my ability to cope has regressed to that of a toddler?
This time, at least, I am hoping to learn the right things, and this time I will also know why. I will at least benefit from the wisdom of this day and age, 30 years and more after the last time I was here.
Too Tired To Even Be Tired…
Currently, the word “fatigue” doesn’t even begin to describe what I am feeling as a consequence of this. And it’s all the more complicated because I am no longer a toddler now, and I am supposed to be some kind of adult. The fatigue that is mentioned in this blog hit home – in particular all the more now because I have to make much more calculations now to try and work something out from scratch, as I no longer have the data and programming available to work from. Within my pain-fried brain, this is usually far, far too much to ask of it, and ergo I have ended up crashing constantly.
I am overly hyper-sensitive to everything, which also causes absolute exhaustion, as does interaction with others (even the closest people to me, let alone others – and don’t ask me to talk to strangers… Just… don’t.). The pain has maxed out my sensory overload quota, so there’s really none left for anything else. Add the hyper-anxiety from it, which is also fed by the exhaustion itself too, it all gets far too much too quickly. Oh, and did I mention I can’t sleep, and am generally too scared to anyway…?
So, you see, I’m just a walking conundrum in a mess, where it all makes sense to me but no one else. My planet is very different from your planet, and here I’m not only weird, but dysfunctional. And being “naturally” dysfunctional (by your standards, not mine – to me it all makes perfect sense) is exhausting, because I have to override everything that is natural to me to get along with you. And dear lord, it is very, very exhausting.
I honestly do not know how to deal with all this. Some of that “Sensory Diet” thing is helping somewhat – it’s helping to give me a sense of myself, of grounding me, of giving me a physical form I am aware of (and not just a disjointed ball of pain), which then gives me parameters to work from. Otherwise I am frankly entirely lost. And the pain magnifies everything and makes things worse. I was starting to get on quite all right before that came along.
What I do know is that I am most of the time simply too exhausted to think or to even care. And when we you see the world through thinking alone… Well, then the world no longer has any sense or meaning, and it becomes truly terrifying. I have to do what feels like a thousand times more processing than before (and I’m older now, which doesn’t help), and it really is just all too, too much. And yet, I still have to try… Only I’m just frankly so sick and tired of having to. Can’t someone come into my world and speak my language and work with my instincts for a change?
The fact is that right now it’s too hard to do what I used to do before – calculate the crap out of everything and squirrel it all away for my own version of data mining, data collating, and data analysis. My brain just does not – cannot – work the same now. The meds I take makes it almost impossible to remember things, to put down new memories, new behaviours to go by. It’s like it’s not only disabled auto-saving but also locked me out of changing the settings to it. I am entirely reliant on others to help me with this, and that is a very frustrating thing: I may have been told that this or that should be done under certain circumstances, but I won’t remember – so others must prompt me or explain again what is expected.
I am a child again. I wonder if this time, “growing up” in this day and age, that things will change. I think in many ways it has; I think in many ways I am allowed to see what it would have been like if I truly was a child now, or if this information had been available 30-odd years ago… and it is somewhat heartening. It’s disheartening in the fact that it wasn’t available, and I am in this situation now, after three decades of struggling.
Is it like a second chance? Who knows… I suppose only time will tell to see if all this was anywhere near worth it…