18 Months In

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Time really flies. Amazingly, today marks 18 months since my body started changing.

It’s been a wild adventure. In many ways I am thriving more than ever before. It’s a tad surreal at times. This post is a little update on how things are going and what’s coming next.

How it’s going.

Life is going pretty darn well. My body is having a bit of a flare up at the moment (I’m a bit wobblier than I have been) but at the same time we’re always making new achievements.

One of the biggest achievements has been getting back on my old bike!

We’ve been slowly working towards this for about a year. Lots of practice riding the big ebike to build my strength and balance. Plus lots of engineering and experimentation to improve our understanding of my body so we can better adapt bikes to fit my needs.

It’s payed off nicely. I’ve been able to ride an adapted rebuild of my non electric mountain bike. It’s such a great bike and it’s super satisfying to be riding it again. It’s an object which strongly ties me back to the time before my injury. Riding my bike again is a great sign of how much we have managed. We’re always learning how to make the most of what my body can do.

Taking it gently I can ride for a couple of hours on flat terrain. It’s not… comfortable…but It’s a fab foundation to build on.

Riding my bike more has been one of the upsides of a large change I’ve made.

I’ve recently redesigned my approach to life when it comes to how I spend my time.

I’m focusing my time on adventures and play. I left my job with the BBC and I’ve been bouncing around the country doing bike rides, talks, events and workshops. When not adventuring I am at home, playing away on a dozen projects.

It’s a massive mix of nerdy stuff, accessibility stuff, making things and being active in different communities and groups.

I’m having heaps of fun with it. I’m flowing through life more smoothly than ever, with a joyful bouncyness which I’ve come to cherish.

It’s been amazingly productive. I’ve built iOS apps, built bikes for friends, relaunched websites, contributed to over a dozen events and quite a lot else.

One of the more personal projects I’ve taken on related to improving my seating.

I find most seating extremely uncomfortable. We’ve found some good tools in the past year (like the buggies) but nothing was working quite right. We’re pretty sure bad seating is what led to the current flare up.

We decided to look for better options and tried a few different things before settling on a special tomato soft touch sitter.

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It’s been an absolute game changer. It’s a comfortable and safe place I can sit at home… but it also works well in campervans and hotel rooms.

The soft sitter and buggy compliment each other really nicely. They each suit different situations, but there’s a very handy overlap in the middle.

We’re still experimenting and I suspect I’ll write about it more in the future.

What’s next?

I like to finish these posts speculating a little about what’s coming up. The things which are exciting to me.

The most exciting thing to me right now is improving my daily autonomy. Over the past year I’ve been slowly getting more in control of my life and my flat. There’s so much more to do. Big themes include food, getting outside alone, nights home alone and improving the layout of my flat.

My hope is that enhancing my autonomy will make life flow a little smoother in the short term, and support the development of more long term independence

Another exciting topic is developing my movement and walking. The new seating has really helped my ability to rest and recover. I can take bigger risks as I have more ways to gracefully reset if things don’t go to plan. The new seating is an enabler.

In the next few months I’m exploring lots of new tools and techniques to see if i can walk further and with better form. We have a fab physio helping us along and we’re optimistic that we might achieve something good.

Finally, I’m excited for relaunching my websites. I have a lot of different websites and resources online. I’m planning to invest a chunk of time and energy into them in the next few months. I don’t have any super specific plans yet…. Which is part of why it’s so exciting. I’m curious how this will evolve and how much the websites and writing will be part of my future.

Final thoughts.

The last 18 months have been a surreal experience. My life is very different, but I am still the same Jamie.

It hasn’t been an easy period of my life and I wouldn’t wish what I have experienced on anyone else. My body is changing rapidly and we still don’t entirely know why. All we can do is ride it out as best we can.

I’m not facing this alone. My friends have been spectacular. They are supportive, resourceful, creative and positive. They have been right beside me all along and we will keep working this all out together.

I’m probably the happiest I have been in years. I am thriving in many areas of my life. The trend is going in the right direction and whatever happens with my body i am confident we will make it work.

It’s not the path we chose but we’re making it our own. The future is exciting.


Spaced Out & Smiling is about exploring the fun side of Autism, and trying to understand what it means to be Autistically Happy.

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Jamie: @JamieKnight
Lion: @Lickr