The Experiment of a Lifetime



From the outside looking in, the fact I’ve recently been diagnosed with Motor Neuron 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.

But I think that’s completely the wrong perspective. Instead, look at it from my Brain’s point of view. 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.

My brain should remain fully functional for the duration, but it’s going on a very peculiar and increasingly lonely one-way voyage into a Dark Void that we already know is 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, probably, a rather boring bedroom wall.

In which case: Great! This is the 21st Century!! If my brain and I are locked on course into that same Dark 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!

Yes, it’s a bit rebellious; think of it as The 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 – keeping breathing and maintaining other bodily functions will largely be mechanical issues, not medical ones. I want great communication systems – both in and out of the Void. I 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 also 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, as a lifelong music-lover I want to help push Music Therapy into new realms. In my ultimate straightjacket, I don’t just want to be able to stimulate myriad parts of my otherwise starved brain by creating music to express the complex emotions of what it feels like to be marooned in an alien parallel world; I want to compose a ‘Symphony from the Dark Void’.

And send it back to you.

If we’re clever 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 we do it 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?