It had all started with Star Wars.
Now, to be fair, probably not a lot of people watching Star Wars ask themselves how exactly Darth Vader breathes, eats, drinks, and goes to the loo. I did. The answers became especially relevant when I realised – thanks to my MND – I would soon not be able to do any of these things, not because my lungs or gut wouldn’t carry on working perfectly, but simply because I wouldn’t have the muscle-power needed to inflate my lungs, swallow or get to a loo.
To me, the feeding and continence issues were a no-brainer. There was nothing going to be wrong with my digestive system, so this was not a medical issue, it was a simple engineering issue. I just needed to be replumbed and have some of the excess pipework removed.
I persuaded three farsighted NHS surgeons to perform in June 2018 what we now believe was the first ever ‘tripleostomy’ in the world – a gastrostomy (feeding tube direct into my stomach), cystostomy (catheter direct into my bladder), and colostomy (waste bag direct onto the colon, a bit like a vacuum cleaner really). OK, I invented the name tripleostomy to make my wild idea sound more credible, but now it’s been used in the title of a paper about my case submitted to the British Medical Journal, so go figure.
With my tripleostomy a huge success (although, my surgeons have asked me to stress, I was lucky because the op is inherently risky with MND) by Autumn last year I was already well on the way to having an ideal human/machine interface. But there was still the pesky long-term problem of carrying on breathing – the main reason almost everyone with MND dies.
So, on the theory that the longer I make myself available, the more ultra-cool technology I’ll get to play with, I thought I’d better solve this Death Issue thingy.