If you manage to live then you’ll be Locked-In – so, aren’t you scared or depressed?
Honestly? Being scared and depressed are definitely hiding in me somewhere, but for the moment I seem to have both of them well under control. As a result, I have never yet felt either scared or depressed. Finding myself with MND isn’t ideal. It’s not what I’d have chosen. But it is what it is. And there’s a lot that can be done to make my life vastly better than it was for the generations before me.
Of course, I’m not completely immune. I totally appreciate that where I’m heading is a potentially scary and depressing place. But it’s a bit like as a student at uni when I used to go mountaineering and potholing. Even back then, I certainly wasn’t an adrenaline junky. I wasn’t one of those people who claim that when they face death they ‘feel so alive’. I liked being alive and I wanted to keep it that way! Getting into perilous situations did not give me a buzz.
But sometimes I did unintentionally find myself at risk. And as a result, sometimes I’d sense a subconscious-panic building just under the surface – and I’d use my conscious mind to push it back. Stay cool. Stay calm. Fall back on training. Think through the problem.
Today, coping with MND feels much the same. Keeping panic at bay. I suspect it’s a very ancient skill our ancestors knew better than us. Seeing the eyes of wolves at night. Unable to see the evil spirits also lurking in the dark. But daring to stay to defend the livestock anyway.
Nevertheless, although I’ve never felt fearful, I have occasionally felt tearful. For a few seconds or minutes. Never more. But that was always triggered by thoughts of those I love. How much I will be restricting them in the future. How I won’t be able to hug them properly in the future. How I won’t be able to kiss them properly. I suspect I’m going through a sort of grieving process.
Worse, in the early days after diagnosis, was the inescapable feeling that – even though intellectually I knew that it simply wasn’t true – the weight of ‘evidence’ on the internet and elsewhere made it clear that I was going to die relatively soon.
This was compounded by the discovery that I’d been placed on the Gold Standard (initially flattering, until I remembered that it was a euphemism for End-of-Life Care). Further compounded by the managers of an old work pension scheme saying they were willing to pay out early because statistically I would not reach pensionable age.
And therefore, I’d miss out being with my soulmate. Miss out growing old together. Fail in my unspoken duty to be the one who’d eventually turn the lights out.
But that premature grief was caused by something that simply wasn’t real. It was basically caused by sloppy reporting. By statistical analyses that included all those who never took up the options to keep themselves alive.
And because I had the scientific training to deny this deluge of ‘fake news’ however overwhelming it appeared, within a few months of diagnosis I was (almost always) able to think the same tragic thoughts but no longer feel tearful – because my subconscious now agreed with my conscious that, almost certainly, I was not going to statistically curl up and die on schedule.
So, with Imminent Death reassuringly shoved back into the same box that each of us keeps it in for nearly all our adult lives, there was little left to be tearful about.
And why not fearful? Simple. Because in a rather perverse way the future looks like it’s going to be rather exciting. Certainly fascinating. In a ‘boys with their toys’ sort of a way, potentially even a little bit fun.
Think about it. I grew up loving Science Fiction. By the age of seven I was determined to get a PhD. Because that’s what Dr Who obviously had, as he wasn’t a medical doctor. As a teenager, it was drummed into me that thanks to Science you never had to suffer profound disability. You became the Six Million Dollar Man. Or Davros, with his army of Darleks. Or Darth Vader. Or Iron Man. You became better than you were before. Better. Stronger. Faster.
And then I became a Computing Scientist. And then I got the PhD I’d promise myself as a kid. In robotics, for heaven’s sake. And I was taught about AI and Neural Networks. And I began a lifelong fascination with the human brain. And, without really thinking about it, I increasingly took for granted that the human body was, in effect, a glorified life-support system for the brain.
Seriously. With a background like that, how on Earth would you have expected me to respond to the news that my body was shutting down?!? Obvious: A once-in-a-lifetime opportunity to give my brain a much-needed Life Support System upgrade.
Those long-established neural pathways left by my teenage-self were ecstatic. They still are.
I suspect I currently feel a bit like a one-way voyager will feel in the far future preparing to launch on a Scientific Survey to a distant Earth-like planet. You know you’re giving up almost everything familiar, but the New World will be eerily familiar. You won’t return, but you’ll keep in close contact with those you care about. There are risks, but they’re acceptable. And you’ll get to play with some of the most advanced personal-technology that has ever existed in this corner of the galaxy.
Far more than that. What you can potentially achieve has never been achieved before. You have a chance to push back the frontiers of knowledge, to experience an alien world in ways nobody has ever been able to explore it before, to change perceptions of the unknown, forever make it easier for those who will follow after you. To boldly go where no one has gone before.
Hollywood had made blockbuster movie franchises out of less! What’s there to be scared of?