Hidden in the Trenches

I feel as though the snow globe perspective has changed. Or perhaps my perspective on the snow globe perspective has changed. I feel at the moment as though I am a writer, living somewhere behind my eyeballs while my body is a character and the world is some elaborate story. Still nothing feels real, but I feel somewhat more attached, albeit oddly. That said, I wouldn’t be surprised if a lot of people felt as though the world had become somewhat fictionalised given the results of the EU referendum. But that is a rant for elsewhere.
I am digging the trenches for the foundations of the Compassion wing of my library. I was going to spend the next few posts writing about love. It seems appropriate. Then Wednesday happened. Wednesday was not dramatic, nothing horrible actually happened. I simply fell asleep too late and woke too early to light which assaulted my eyes. I have never been hungover, but from what I have been told, my hypersensitive days are much like being hungover. It feels as though the world is closing in around me and the volume has been turned up. It feels like when you stand next to a speaker playing loud music and the base rhythm reverberates through you, merges with your pulse and drives any coherent thoughts from your mind. It is almost painful. I didn’t want to get up in the morning. I didn’t want to go out. I did. I did because I can’t tell the difference between my depression voice rearing its head and genuine instinct. I couldn’t think. The lab lights dried out my eyes. When people spoke I heard words but not meanings. I couldn’t do anything. Noise pressed in. Light pressed in. I could feel my nerves curling up tighter, the way they do before the volcano erupts. I don’t want to have a meltdown in the lab. If I did that, I could do some serious damage. So I went home early. I said I was ill. Ill isn’t quite the right word. I spent the next three days doing next to nothing barely even getting dressed. I don’t want to go back to that.
So instead of writing about love, while I dig these trenches I am going to rant. Can love mean anything if its forced? If it’s faked? If it’s false? If I am building a Library wing dedicated to love, first I need to let go of the anger and of the hate.
Wednesday was one of those days I would have taken the Magic anti-autism pill in a heartbeat. Sometimes, when all I want to do is curl up in a ball and cry tears that never come or bang my head against the wall as hard as I can, I hate it. Aspergers is the gulf between where I am and where I’d like to be. I don’t want to be placated. I am allowed to rant. I am allowed to say how I feel. Do not tell me there are positives. What positives? ‘You have a phenomenal memory Robin.’
No. I had a phenomenal memory. Past tense. I haven’t had a good memory since I was seventeen. It’s better now than it was a year ago, but it isn’t good. It isn’t near photographic. It isn’t anything special. It’s that now, unlike a year ago, if I put a book down for a day or two I can still remember roughly what was going on. I realised recently there are bits of Harry Potter that I don’t remember. Harry Potter. That series I know by heart having read it repeatedly and listened to it every night for years. Phenomenal memory? I don’t see it.
‘You have such an interesting perspective on things.’
No I don’t. I live in a snow globe and even inside the snow globe I walk the same routes repeatedly. I stay in the same place. I have the same conversations. I repeat the same patterns. I rephrase the same thing in different contexts.
‘You’re good at sticking to your own rules and following instructions to the letter.’
That is almost laughable. I break almost every rule I ever make for myself within hours. In that respect I’m just as fallible as a neurotypical person. I know what helps me function and feel better in theory, but do I actually stick to that? Of course not. Because I’m tired. Or I can’t be bothered. Or ‘screw it, I’ll start tomorrow.’ Do I follow instructions to the letter? Sometimes. If I remember them. If I’ve processed what the instructions are before trying to follow them then maybe. If I don’t realise halfway through that I’ve made a mistake I can’t be bothered to correct.
At the Autism art exhibition one of the comments was along the lines of ‘why would we want a magic pill for autism when we haven’t found one to deal with the problems neurotypical people have?’ The flaw in that is I have the problems that neurotypical people have and then some.
I hate that rain is enough to make me start panicking, wanting to rip my hair out or curl up in a ball and cry. I hate that there are days that, for not obvious reason, I wake up with the ability to hear a watch ticking on the far side of the room, or someone walking past a street away. I hate it when I can see the lights flickering when nobody else can and it makes it impossible to focus. I hate it that it takes thirty seconds between someone speaking and me registering what has actually been said. I hate feeling on edge and not being able to trust myself that going home and giving myself space is the right thing to do, because it might just be the voice of self-destruction calling. I hate feeling like an outsider wherever I go, whoever I’m with. I hate the fear that something will go wrong and I’ll be trapped behind my eyes watching myself turn into an overgrown toddler. I hate missing out on things, or running away from things, or not being able to put all of my energy into the things that I care about because of this. I hate not being allowed to say any of this without someone feeding me a platitude.
I am not ill. It’s a difference not a disorder. There’s nothing wrong with me, I just see the world differently.

 

Well, better get on with changing the world hadn’t I?
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Hello, I’m the Doctor

It has been a while. I intend to rectify that. The real world and writing of a more fantastical kind have distracted me. Meanwhile summer is slowly blossoming inside my snow globe. Sometimes it is beautiful. Sometimes it is a stifling reminder of the things that have yet to change. Occasionally the numbness creeps in, the nagging absence of anxiety. So sometimes the glass is thicker. Sometimes I curl up my back to the beginnings of my library courtyard, and let myself hide a while. Progress is slow, but the plans are drawn. Brick by careful brick the foundations are being laid. I am writing again. A little here and there. Often emotional more than the fantastical I aspire to. I am reading again. Sporadically, but none the less, real books, literature. I am more present with people; I am learning to care in practice not just in thought. I am working in a lab in Oxford. I’ve barely been there a week, but I know this is what I want to do with my life. No matter how hard the next two years are, I will get through University. I want to do a PHD and not just so I can open the door with ‘hello, I’m the Doctor.’ Cue TARDIS background noise.
I am beginning to find a place where I am capable of building from. A middle ground between shelter and connection. Sometimes I get it wrong. But I’m learning to use that rather than drown in it. I am closer to okay than I have been in a long time. Sometimes I can only see that with hindsight because in the moment I still feel precariously close to the edge. Perhaps, like the snow globe, that is simply part of who I am. Perhaps I can be okay with that. If I were not so close to the edge, would I have the same appreciation for every moment I keep my balance? I doubt it.

 

Today I am at the edge of what will one day be the compassion wing of my library. Compassion means sympathy for others. It means wanting to alleviate their suffering. It means caring unconditionally. By extension it means love. Perhaps love would be a more accurate title for this part of my library. But love is too broad and defuse a thing to be contained within a building inside a snow globe. Nonetheless, it is this wing of my library that will be the most emotional and will harbour the most connection to people outside my snow globe. Perhaps, as I work on building it, I’ll take the time to ponder such topics.