2021 has been a wild year. It’s been very tricky in places but overall I have thrived.
It’s a bit of a paradox really. My body has been changing all year with lots of new and really challenging barriers…. But it’s sorta kinda worked fine.
This post is my end of year reflection. Some thoughts on how I approach my life and some ideas for what 2022 may bring.
Since my spinal cord injury became apparent in March my life has become much simpler. It sorta had too. In the early days after the injury I really struggled to move. I spent 23+ hours a day laying down.
It more or less acted as a giant reset on life. I was forced to essentially start from scratch and rethink almost everything.
Luckily we started with lots of good things. I already had daily support routines in place and epic friends to help out.
We’ve engineered like crazy. Working through all the barriers and finding ways to make life work. Various themes have started popping up.
One of the main themes of 2021 has been to embrace ‘living little’. I’ve never been super ‘grown up’. It’s the reason I’ve never lived independently and need so much support to stay safe. I just hit hard limits and burn out.
For a while now I’ve accepted my limits and focused on finding what works for me regardless of where it comes from. I seek out things which are bouncy, colourful, playful and joyful.
Life has ended up rather ‘toddlery’. It’s really effective and makes my heart sing. It’s become the default approach. Not the only approach, but a good place to start.
One of the more interesting things about ‘living little’ is that it overlaps well with monotropism. As my world got smaller & simpler I noticed that I was happier. I was more productive and more able to do things.
I’ve learnt a lot about myself. Being monotropic I function best when I focus on a handful of things and work carefully to establish flowy ‘attention tunnels’.
I am finding it more meaningful to think about myself as ‘little’ and monotropic rather than ‘autistic’ and ‘ADHD’.
I shape my life and environment around tunnels not tasks. It’s been marvellous.
The second theme for 2021 and going into 2022 is the concept of a ‘tiny home’.
With all the changes to my body it was getting very hard to share my home with my flatmate. We figuratively and literally kept tripping over each other.
The solution was a bit drastic. We rejigged the flat entirely, got rid of the shared lounge and created two ‘tiny homes’.
My flatmate has the lounge, kitchen and bathroom. I have the two bedrooms and the en-suite. We both have more space than before.
It’s worked better than we imagined! We can spend time together when we want but we don’t get in each other’s way the rest of the time.
With more space to play with I’ve been able to rethink my day to day life. I’ve split the space up by capability and activity.
I took the large room and designed a space for when I am quite spaced out or derpy. A space to hide in when I am at my least capable or need simplicity.
It’s focused on the ‘living little’ stuff. It’s super safe and cosy. No sharp edges to flap on and easily breakable things to knock over. It has my enclosed bed, sensory toys, lots of plushies and most of my clothing etc. it’s a great space for doing stuff which is gentle and flowy like listening to audiobooks, sensory play and snuggling lion. it’s also where i sleep and rest.
I’ve created an active space in the small room. It’s where I go when I am more capable. It’s designed around getting stuff done or having fun.
The far end of the room is for work and making things. I have a desk for my Mac with a big 28” display. I mostly sit in a buggy or stroller as that keeps the pain levels low. It’s all designed to make it easy to get into monotropic attention tunnels & flow states.
The rest of the room is my play space. The idea is to always have something I can pick up and play with nearby. There’s a bookcase full of things to do (Lego, magazines etc) plus a big TV and my Xbox. For playing I mostly sit on a big beanbag.
All in, my ‘tiny home’ builds on the ‘living little’ and monotropism themes. Dedicated spaces for different things and recognising I need at least one space where I feel safe enough to relax.
In terms of my home and living little we’re always learning. We’re always thinking about new ways to solve barriers.
I still have lots of issues standing up. To help with this we’ve been working on a standing frame. It’s been heavily inspired by the doorway style baby bouncers. I used it over Christmas to stand at a table to play Lego and it was epic. We’re going to keep iterating on it.
We’re also still looking for good options for getting around outside. The buggies are fab for long trips and my stick is sorta okay for very short trips. I’d like to find something for medium trip. We’re looking at something like a Veloped Tour but we might also make something a little more fun.
Sitting down for eating and gaming is another area where we want to find a better solution. The bean bag and buggies work but are not ideal.
The angle of the buggy is too reclined for eating and the bean bag isn’t supportive enough. Both are hard to get in and out of. We’re hoping to try a special tomato soft touch sitter in the next few months. See if it works a little better.
We’re also going to keep going with the drs. See if they can do anything to help.
The title of this blog post is a riff on the name of a YouTube channel called Living Big in a Tiny House.
It’s a really great channel and a wonderful resource for learning ways to make the most of a small space. It’s also quite philosophical; exploring what it means to be happy and why living small can be so rewarding. It’s been good inspiration :)
As 2021 comes to an end, I am feeling fairly positive about the future. The last year has been hugely challenging but we have made it work.
We’ve overcome so many barriers already. To go from 23+ hours a day laying flat to my current active lifestyle is a huge achievement.
It’s taken a huge amount of engineering but it’s worked. It’s been a group effort. I wouldn’t have managed it without huge support from friends and the support folks Oli, Mary, Trish and Cate.
Onwards into 2022!