Out of everything that is happening right now. Both autistic life and mobility related, the thing that I fear most is loosing my cheerfulness.
This is a little post to explore the topic. The intersection between autistic life and emotions, plus the added complexity that comes with other barriers such as chronic pain and mobility impairments.
One of the reasons I have friends is because I am generally cheerful. I’ve navigated autism related barriers all my life but I’ve generally not let it get me down.
There’s a reason my friends often describe me as a like being a big bouncy five year old. Adventurous, curious and eager to get involved, play and learn. Life can be really fun and joyful this way.
This also means when I struggle I tend to have elicit a kind and gentle response. When it goes wrong I become very muddled and spaced out. I don’t become aggressive or threatening.
I am writing this laying on my bed. I’ve been here for a little over 15 hours. I am laying in a very specific position. I am floating. I feel safe.
Language is very hard. I’ll use the term ‘pain’ but it’s a bit imprecise.
When I am floating like this the ‘pain’ is a white noise. It’s easy to forget about it when I am doing stuff. It doesn’t intrude or eat away at my focus and mood.
The same is true of the two buggies and when riding a recumbent bike. I can more or less float there too.
Everywhere else, I don’t float. The pain intrudes. As time passes I get more and more grumpy. I get very high friction to be around. It’s horrible for everyone and I eventually ending up monologging angry rants about whatever is annoying me.
The pain destroys my cheerfulness. The grump is corrosive. I don’t like grumpy Jamie and neither does anyone else. I fear one day it will land me in prison or worse. It’s scary to feel this change in my personality.
I suspect this is a familiar experience for a lot of autistic people. As demands around us rise we become harder to be around which quickly limits our social options.
The good news is that we know the source of the grump. It’s mostly driven by pain.
We also know how to manage it. Right now I can only float in a few places (bed, buggy, trike) but we can engineer new places and solutions.
While life is very limited when I can only exist in this way, at least I have options. I can work from bed, or work at my desk with the little buggy. I can go outside in the big buggy or riding the recumbent trike. There plenty of life options.
I am choosing to live a life which is more limited in return for preserving my cheerfulness. As a friend put it, more two than five right now.
It’s not easy. It’s frustrating, it’s often boring. But it works and it gives me the mental bandwidth and stability to engineer better solutions. We’re also exploring options with the wheelchair and seating service. See what they can provide.
Life is pretty hard right now but we have good foundations to build on. The rest needs time and effort. We can make it work but first I must recognise and protect my cheerfulness.