Nearly thirty years ago, during the winter when I was most severely ill with Chronic Fatigue Syndrome, I’d sometimes fall asleep in the afternoon and then wake up at sunset, and become extremely upset, terrified and crying. The overwhelming feeling was that not only the day but my entire life was slipping away into the dark, as if I was dying yet not dying at the same time. I wanted to write, to paint, to just get up and move, but I couldn’t. I couldn’t even read. I couldn’t do anything but lie there, not knowing if I would ever be able to do anything meaningful again. I wondered if my life was already over. If there is a hell, I imagine it to be like that.
Fast forward to now. While I’m not that low anymore, I’m not young anymore either, and ‘Chronic Fatigue’ means just that. There’s never any point where I’m not at least a little tired, and the question is always ‘how much can I push it, and for how long?’ Many people don’t understand the fragility that comes with chronic illness, how a sudden drop in energy can come on you like the blast of a cold wind, how you must carefully hoard your ‘spoons’, figuring out if you have the reserves to do a thing, or will it backfire on you. This has been my reality for so long I’ve forgotten how it was to feel otherwise, and can only marvel at other’s seemingly limitless energy.
And as I’ve grown older, my health conditions have multiplied. Arthritis, low thyroid, Type 2 diabetes, GERD, probable IBS, various inflammations and injuries… the list goes on. I also had Covid recently, which hasn’t helped. CFS however remains the condition that most profoundly affects me. It means that I have fewer energy reserves to battle with my other conditions, and at this point I don’t know if the slow deterioration I’ve been experiencing in recent years is due to my CFS getting worse, simple aging, or if something else is to blame.
Realistically, I know I have maybe twenty years left at most, and it’s anyone’s guess how many of those are likely to be productive ones. I feel the urging, every bit as much as I did back then, to do as much creative work as I can - before I lose the ability to do so again, permanently. This is a big reason why I no longer care about or waste energy on anything or anyone that gets in the way of me being my authentic self, as this is where my creative work originates. Yes, I have important people I care about, but beyond that…. Life’s too short. Literally.
I like to think I’m realistic about what I can achieve. The odds are against my becoming The Next Big Thing in fantasy fiction, for example, or writing ‘THE’ Book On Being Autistic, or even making a living out of writing, let alone getting rich. So I’m not fooling myself, but I need to Do Things anyway, because the alternative is dying feeling like I’ve missed the only chances I have left to achieve anything with the creative gifts I have. And that’s without the creative impulse itself driving me.
But that’s not my only motivation to ‘get busy’ with writing. I look back and want to weep sometimes, how much of my life has been wasted. If only I’d known everything then that I know now about myself, how different things could have been. If only I’d had the right supports, the right understanding, the acceptance that is still begrudged to so many neurodivergents, how different my life would have been. How much more I could have achieved, how many projects I could have completed, books I could have written, paintings I could have done… How I could have known how to look after my health better, let go of anxiety better, got out of toxic relationships earlier or not gotten into them at all, and most especially accepted my neuro-self better…
Pointless, I know, but I can’t help thinking that it could
have been all so different.
Because my chronic weariness isn’t just physical, but a weariness of the SOUL. I’m so tired of a world which I constantly jar against, and which continually judges us and finds us wanting, while usually lacking all understanding of what it really means to be autistic. I’m tired of the implicit insistence that ‘neurotypical is best’, when neurotypicals have so many conspicuous lacks and faults themselves. Being NT is not the be-all and end-all of being human that too many still assume it is. It’s a seriously warped and crappy world they’ve created, and it feels like it’s getting worse by the day. When my time comes, I won’t be sorry to leave it, only to leave the people I care about. Yes, I’m angry, but it’s a tired, ancient anger, laced with sadness, with little hope of any resolution.
Anyway. Here I am, in the twilight of my life, and I‘m really not sure where to from here. I still want to make a difference however, and still feel I have something to contribute. Time will tell how much, and in what way. But it’s a primary motivation to carry on with my efforts to get at least *something* done.
Because while it’s too late for me - I’m a damaged soul - if there’s one thing that keeps me going, it’s a determination to try to make things at least a *little* better for those who come after us. If anything I write or do or say helps others not go through the kind of life I’ve had, or to imagine a better or at least different world, then it’s worth it. Because they deserve better. We all deserve, and deserved, better.
