Floating With Balloons

She Goes On Drifting

It feels wrong to say I was given the ‘gift’ of time when the time arrived amidst a burnout, but nevertheless, time was what I had. Some breathing space. I left my job with a generous payout which meant I could take a year off and still have wiggle room at the end of it.

There is so much I wish I could articulate right now. I am a verbal processor, I am highly verbal, but when feelings descend my ability to communicate shuts down. The hardest part of all, is no one else notices. I am so verbal I appear to all intents and purposes to be fine, when internally I cannot hold onto my thoughts, let alone sort through them, long enough to make sense of them. What am I feeling? What was I doing? What did I plan to do today? No idea.

Imagine being so good at articulating that your ‘non-verbal’ is still highly verbal? How do you explain that? How do you communicate the loneliness of that?

No idea, but maybe in three years I’ll be able to, when I’ve processed what it is I want to say.

On paper I’ve had a year off work, but that’s not my experience of it. What that means is I’ve had a year where I’ve not earned any money¹, because I’ve worked pretty damn hard the whole year.

We are results based as a culture, from wobbly steps and stumbled words, through school and work, even goddammit, in retirement, we focus on results and output, the visible companion to the invisible input. It’s the wrong place to look. Results are arbitrary, the child who is never able to walk, who is never able to talk has just as much value as the child who grows up and tanks the stock market in the pursuit of wealth and you’ll never convince me otherwise. There’s a balancing in nature, she never fails.

At school my Mum said I always had “one year on and one year off” and her hope was that my exams would fall in an “on” year. To be clear here, my Mum wasn’t telling me off or judging me, she was doing what mum’s do best, worrying about the fully formed child in front of her, knowing full well she can’t control any of the outcomes to protect said child from what might appear to be their worst habits, and trying to encourage them to lean on their best habits when it really mattered. My Mum continues to be fiercely protective of her children, it’s made us all more secure than we could have been with a different parent, especially when two of us are objectively mental.

I am directional, no scrap that, intentional. I need to know where I am going, but more importantly, why I am going there. I can’t tell you how I’ll get there and believe me at times I truly believe I never will, but as long as there is an aim, that I can understand, I will keep going and I will be okay.

Even when I’m floating between an idea, between a direction, it’s not what my Mum described as being “off”, I was never off. I might appear stationary but my mind is working like legs treading water, trying to keep afloat whilst we work out which direction to swim towards that might bring us to land, to actual rest. So far, we’ve never landed. I assume that’s death.

At school, exams were the aim, nothing else mattered, we went to school to get good results so we could go to more school and eventually work. I wasn’t going to go to work, not in the traditional sense, so the purpose of school made little to no sense to me and I cared little for its modes of measurement, but I would still try and get good grades, in my own way, because everyone else seemed to care about that. If results were achieved it was because I got myself to them; aside from my drama teacher, not one single teacher in my school can take any credit for my results. My A-Level English teacher at college and my GCSE Drama teacher at school are the only two who bothered to teach the person, not the curriculum. I taught myself between my classes, I’ve always had to do that, even at drama school years later, even in therapy too (but that’s another conversation).

My “off” years were the ones where I was organising the chaos inside my mind. For me they were very active years, in fact I worked harder in those years than in my “on” years. The “on” years were the ones where I absorbed the curriculum and tried to keep up with the arbitrary measures that proved this, my “off” years were the ones where I stopped trying to fit the school mould and made sense of the information I had been absorbing without enough time to process. I gave myself processing time. This work is insular, internal, absolutely invisible to anyone who is not living inside my mind. But picture the cliché image of an autistic child who takes apart the toy and puts it back together again, over and over and over, that’s what’s happening inside my mind when I’m rearranging everything I’ve been absorbing in class, or otherwise, until I can make any sense of it.

To my Mum, my teachers and my friends, it looks a lot like day dreaming, reading and watching TV. To this day if I need to unlock a new perspective on something I’m working on, a trip to the cinema, an art gallery or a stint reading a book will ALWAYS help. I do my best writing inside my head whilst watching a film in the cinema. You’d never know it’s happening because I cannot write it down, I’m not a monster who gets their phone out mid-film, I write silently in my head and then scribble it all down later. Something about moving images, whether it’s the view as I walk through it, or a screen as I sit in front of it, moving images help me see things inside my mind more clearly.

I would describe this second year “off” work, the year in which money has once again become the thing I have to worry about, as my year “off”, to use my mother’s terms. The closer I get to the deadline of needing to earn more money the less my brain seems to be able to do any kind of thinking, no matter how much I kick about in the water, I can’t see through the noise and the panic. There is no space in my mind and time is shrinking rather than expanding before me. I keep rearranging all the work I was doing last year trying to find the model that might work best for me to build a life around that won’t lead to more burn out.

Earning money has never been a direction I can aim at, earning money tends to cause a deep fracture in focus for me. It gets in my way. I need money to be incidental, something that happens when I’m not aiming for it. An accidental consequence of a much wider goal. The problem is, I have too many goals and no clear direction, and so everything has stalled. The engine has blown out. And the deadline of red looms.

This always happens, largely because it takes me longer than the time I ever have to complete things. I need double the amount of time I’ve been given. Neurodivergent people are supposed to get 25% longer for tasks, an arbitrary figure decided by who exactly? At school I needed a year of learning the way they thought I should learn, and then a year to unpack that and make sense of it. In life, in my creative projects, I need a year of throwing things at a wall, a year of rearranging and then a year of pulling all of that work together, usually in a rush. That 25% extra is about as arbitrary as the single person’s council tax discount - I am a whole person not half a person thank you very much.

I am inside several projects, all of which could lead to incidental earnings but not before they’re ready. And they’ll never be ready if I don’t have enough time. And round and round she goes in an unending cycle of “has great potential she will never quite achieve”.

All my goals are long-term and they always have been but the pressing demand of money is always short-term, present, urgent. I don’t have an urgent bone in my body, not by choice, by design. My gaze fixes itself across history and well into the future and cares very little for the present. It doesn’t understand anything in the present moment, that’s autism, seeing the details first means nothing, nothing, makes sense in the present where the complex interconnection of all those details has not yet revealed itself.

In Bob Dylan’s memoir he talks about reading the news of the past when all around him are screaming about the news of the present. It’s the first time I’ve met someone (on paper) who outwardly shares my own feelings about it. The news of the present is all despair with zero understanding, it is relentless. The news of the past makes far more sense, and when you cast your lens back to literally any point in known human history you will find the same behaviours repeating themselves, and the story unfolds predictably. Here I can also see into the future, beyond my own grave and make sense of the noise of the present.

As America descends into whatever America is becoming, Bob Dylan keeps posting long clips of people from the era of the American Civil war (or thereabouts) on his Instagram page. I am obsessed with Bob Dylan’s Instagram page, he shows as much consideration for the ways other people use that platform as he does for anything else, and within that he always finds his own unique voice and perspective. An artist in its truest form.

The problem is we don’t know what we are as a species, but the past unravels us. Reveals us. It’s always the first place I look when the present is overwhelming.

Scientists in the present stare at light that is so old, it pre-exists our own planet, to make sense of where we are now within the universe. They are trying to predict what will happen in the future by measuring the light we can see today. In reality, the universe could already be collapsing at an accelerated rate towards the singular point of the big bang but we’d never know it because it takes time for the light to reveal itself to us. This is true in all senses.

If you measure my value, or my work, by the time it takes me to get where I’m going then I have no value. My value can only be found in the complexity of my work, and a complex system takes a long time to build. Late stage capitalism has no room for complexity, everything is in a hurry, and I can only move slowly whilst the World rushes on, breathlessly.

This is true for many, not just the autistic amongst us. The greatest act of rebellion, of activism, that I have at my disposal is to just be who I am, against the current demanding that I flatten myself as I race towards death. How I house and feed myself whilst I do this is the problem I’m yet to solve. But I’m not alone across history in that conundrum and the artists I love, nearly all faced this problem. Humanity has yet to solve how to value anything that cannot be produced in a hurry until after they realise how much they need it. The lesson we refuse to learn is that we actually need the things that appear slowly far more than that which rushes by, without a care about what it destroys as it goes.

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1. I have earned some money in very small trickles, but it still doesn’t quite yet add up to a month’s wage on a tight budget