The Experiment of a Lifetime


From the outside looking in, the fact I’ve recently been diagnosed with Motor Neurone Disease can seem rather depressing: Over the next few years my body, but not my brain, will shut down till I potentially can’t breathe or – if I use a mechanical ventilator – till I become Locked-In, unable to move.

My brain should remain fully functional for the duration, but it’s going on a very peculiar and – so you might think – increasingly lonely and scary one-way voyage into what is typically portrayed as a nightmarish Void, hostile to life, from where it’s incredibly hard to get any information back to the Real World, and where the only information in (via my eyes and ears, which should keep working) is like a fixed webcam-feed looking at, potentially, a rather boring hospital ceiling.

But I think that’s completely the wrong perspective. Instead, look at it from my Brain’s point of view and what these days can be done to support it. Imagine the extraordinary journey that, as an increasingly disembodied intelligence, it is now embarked upon – with me (its self-aware bit) along for the ride. Take away the horror of the situation, and it’s actually rather fascinating.

So, let’s take away the horror…

Based on what I know of emerging technology, I simply don’t accept the standard version of what my future will be. This is the 21st Century! If my brain and I are locked on course into that same inescapable Void that’s been swallowing people since – we assume – prehistory, then on this occasion at last let’s prepare for a proper Voyage of Discovery. Let’s be fully SCIENTIFIC about this.

I want to take every Hi-Tech support possible with me into the Void; I don’t just want to survive in there, I want to THRIVE!

I think of it as my Radical DisABILITY Project. Its slogan: BREAK THE RULES.

This is what it means. Before I travel too far, I want to set up really reliable life support. The often-quoted prognosis for MND of “death in 2-5 years” is totally misleading – keeping breathing and maintaining other bodily functions are largely mechanical issues, not medical ones. So, because I want to remain largely self-sufficient rather than totally dependent on carers, I’ve arranged to have a gastrostomy, suprapubic catheterisation, and colostomy before my arms stop working and I can no longer feed myself or use the bathroom unaided. I’ll have a tracheostomy well before my lungs can’t cope. That all means that physically I’ll keep going.

Which opens up numerous possibilities to start having a bit of fun.

I want great communication systems – both in and out of the Void. So, while I still have plenty of time, I’m training myself with eye-tracking technology to write up to thirty words a minute as well as control multiple computers. And I’m training a voice synthesiser to speak in my own voice.

Together, just those two interventions mean I’ll always be able to hold slow real-time conversations even when all I can move is my eyeballs. And interact with anything that uses a remote control. But that’s just the start. I also want new Hi-Tech senses and robotic abilities to replace the ones that get cut off – so my brain is still using all its innate formidable processing power.

And I want to force some light into the Dark Void, push back the Nothingness, and populate it with cyberspace, Virtual Reality, Augmented Reality and Artificial Intelligence – with modern technology there is no reason why I must be isolated, lonely or unstimulated.

For instance, I’ve always loved writing. In my ultimate straightjacket, I don’t just want to be able to exercise myriad parts of my otherwise starved brain by keeping a private journal in which I record the complex emotions of what it feels like to be travelling into – and then becoming marooned within – an alien parallel world; I want to write an entire book about the experience. I’ll call it: ‘Into the Void’.

And I’ll send it back out of the Void, back to you.

If I’m lucky enough, my bizarre one-way journey into solitary confinement might eventually end up somewhere remarkably like Home. OK, a Virtual Home, but maybe one that is even more comfortable than the one I was forced to leave, even easier to navigate, even more secure, even more fulfilling.

But above all else, as on every well-conceived scientific voyage, I want to push back the frontiers of knowledge in ways that, if done right, hopefully could help millions of people.

Some likely spinoffs from the research are pretty obvious, such as learning effective ways to revolutionize the lives of everyone paralyzed by accident or disease. Yet, profound disability and loneliness are often also functions simply of Old Age; here too there should be widespread benefits.

And there are other, far less obvious, spinoffs. As the sophistication of Artificial Intelligence continues to explode, we humans need to experiment with how to seamlessly tap into it, how best to use it to amplify our own intelligence. Or indeed compensate for dementia. Otherwise, as a species, we risk simply being left behind.

For all these potential research spinoffs, there’s a huge advantage that comes from the fact that the Hi-Tech support systems I’m going to experiment with are all computer-based. Current rates of development mean that a prohibitively expensive piece of kit costing £100,000 today will only cost around £3,000 a decade on.

That makes any spinoffs affordable to the majority. And, in my mind at least, it is the image of that glittering prize that ultimately makes my voyage into the Void feel not just bearable, but worthwhile.

In terms of impact – I won’t be isolated at all.

In terms of a sense of purpose – I’ll have one in Spades.

What’s more, there’s a final challenging thought that keeps flitting through my head as I prepare to set off into the Void on what is for me, quite literally, the experiment of a lifetime: Wouldn’t it be interesting if, as a result of all these 24/7 Hi-Tech monitoring and support systems, I eventually ended up living longer and with more abilities than if I’d never even been diagnosed with Motor Neuron Disease in the first place?