The story starts at the Randburg Waterfront. I’m drifting crazy within the world cup crowd, lost in my wheelchair. Powerless, and broken down. I’m new to this. I think I always will be. Then we jump to that time my face ended in the dirt, which of course involves needing to pee, and, why not, we jump to other bathroom discussions.

These are the realities.

What does it feel like to lose your body to a muscle disease? For a long time, even after I had been diagnosed, I had no idea. Because I’m new to this. We all are. This is not familiar for anyone.

Which, I guess, is why I started writing this manuscript all those years ago, and why I finished typing a lot of it on my cell phone. I needed to get the mess inside my head into some kind of story I could understand, and, therefore, that I could share with people.

Dissecting Wobbles is me talking to myself, and to you, at the same time. It’s me remembering other times, when I ran and jumped and landed on my face. It goes from my early childhood through the diagnosis and my weird and rebellious teens, and then into adulthood and a real decline. The story follows a similar course to most young lives, only for me, at the centre of school, growing up and girls was the disease, which morphed from a limp to a crutch to a wheelchair to right here and now.
The basic story is chronological, and is punctuated by blog posts I made when I started to write about my life. These explore the weird and often powerful realisations I have come to through my relationship with Friederich’s Ataxia. They offer a counter point to the linear story, which goes from my largely innocent and happy childhood – despite being dyslexic and ended up in the spazz class – via quite a few adventures and mis adventures, to an increasingly internal life. The life inside my head.

Of course, I can’t help but talk about the things I’ve done. The good things, especially. I have swum with dolphins and sky dived and white-water rafted and much besides. And some dodgy things. I’ve taken ecstasy and smoked weed and drank too much and stopped all that at (I hope), about the right time.

Also, as I get older and weaker I spend time talking about what I haven’t done. I never became a motivational speaker. I never studied. I’ve only had a bit of work in my life. Actually, this book is one of the few things I have done that I’m solidly proud of.

And we end in the now. Me in all the positions and situations I feared and dreaded for so many years. We end with you and me communicating. With what being alive is all about.