Todays a bit of a milestone for me. It’s exactly a year since my body started changing.
It’s been a wild ride. Life is very different, but I am more or less the same Jamie. It’s all the same things but in different ways.
This is a little post exploring the changes and how they have helped me to thrive as my mobility and vision have been reduced.
My home life is fairly stable. It can get complicated with support logistics and all the moving parts of living independently. But for the most part it’s fairly smooth.
I still live in the same flat as a year ago and I still have a flatmate. The biggest change is in how we use the flat. I spent most of 2021 in one room. Sleeping, eating and working in one space. That wasn’t working well so we rejigged the layout so i have two rooms. A bedroom and a den.
Having two rooms to use has been really effective. I have permanent spots set up for sleeping, working and relaxing and I can safely move between them.
My mobility at home is ‘good enough’. I can move around enough to do the things I need to do.
A year ago I more or less built my life around bike rides. I’d go for a big ride once a month and then use the rest of the time for small rides and building the bikes.
This all went away after my mobility changed. Within a few few months I was out riding trikes and then slowly worked out how to build a bike I could ride. It has to be a really specific shape and even then I can’t pedal much. After we proved the basic idea was feasible we then invested in an ebike.
I’ve been back to bike park wales and ridden around. I’m hoping to go back quite often in the coming spring and summer.
I can’t walk very far and that’s posed a lot of issues. I can ride around a forest all day on the ebike, but I can’t walk unsupport across the car park.
We explored a few options and have gone down the buggy route. It’s one of the best investments we made and has literally made my world bigger. It works so well I also use it everyday as a desk chair.
All in there’s lots of changes but nothing totally new. I’m still a mountain biker and I still love a good adventure :)
My work life has had the biggest change. It wasn’t even related to my body! Large changes within the BBC occurred while I was on sick leave.
We worked really well through the initial challenge and thrived. However we now need to work on something more long term. It’s taken a while to find something sustainable but we’re more or less there.
I’ve changed role a bit. Not something I wanted to do as such, but it’s the problem that’s in front of me and we have a good idea of how to solve it.
I’m optimistic on this one and momentum is building around us.
As a final thread my sense of identity has change a bit… but not in the direction I would have expected.
One key thing is I haven’t gone down the ‘spinal cord injury’ path for identity. It’s a thing I have and it’s a big part of my life but I don’t view it as a medical thing. My body’s always been changing. It just changed in a way we didn’t expect.
On the cognitive side of things I’ve moved a bit away from the autistic / neurodivergent lens towards the ‘monotropic’ and little lens.
I’ve learnt that my body works best with long flowy attention tunnels and that I should embrace my preferences for things which are bright, colourful and joyful. Life’s to short not to have fun.
These two insights are key to how I think about my life and plan for my future.
Life is different now. My body can be very tricky sometimes. However it’s generally all going in the right direction. Each week we have progress on something.
It’s been stressful at times, but we’re on a good path and I will continue to thrive. Its not the year I planned but we made it work anyway. Knowing we can make it work gives me confidence for the future. However my body changes we can make life joyful.
