You seem very calm about your MND – is that because you draw comfort from religion?
I’m a scientist. It’s the 21st Century. I feel absolutely no need for supernatural explanations of any aspect of the Universe – least of all my MND. If you think about it, not accepting mystical or paranormal reasons for why things happen sort of goes with the job-description of being a scientist. Otherwise we could all just declare victory and go home early.
Don’t get me wrong, I have many friends (particularly in the USA) who are religious. I get it. I totally understand why if you’re religious it might sometimes help some people somehow to cope with something like MND. But definitely not me.
Given the way that my brain works, I am really glad I am not in the least bit religious; it would be terribly distracting to me at the moment. I’d be in total turmoil, constantly trying to work out: What does it all mean?!? Why me? Why now? Is it a test? Is it a punishment? Should I be praying more? Should I be trying to negotiate some sort of deal with the self-same omnipotence who in her infinite wisdom gave me MND in the first place? I’d be going absolutely bonkers! Believing that it was all part of a Grand Plan would only fixate me on trying to work out what the Plan was! That’s who I am!!
In contrast, I am completely at peace with the statistics of my situation. MND is actually far more common than most people realise. It only feels rare because few of those diagnosed with it stick around long enough to become Locked In. 90% die, or let themselves die, within five years. So, there are never very many people with MND around at any one time. But in fact, the likelihood of anyone contracting MND sometime in their lives is around 1 in 300. In my book, that’s quite likely!
Have I been Unlucky? No, not really. It’s just that I happen to be that statistical outlier. If it weren’t me, it would be you. Or someone else. But 1 out of every 300 of us has to be special and get what I’ve got. Otherwise, one-in-300 wouldn’t be the odds. Things just happen.
With that said, let me be perfectly clear. I may not have religion, but I draw immense strength and comfort from my exceptionally deep Faith. In three things.
Firstly, I have total faith in Science. Not that it is right – I know it’s not. But that it will keep improving. And, unlike dogma, will steadily be less and less wrong. And that if anything can improve my life with MND, it can.
Secondly, I have huge faith in Humanity. Not that everyone is kind – I know they’re not. But that despite the vile cruelty and repellent inhumanity of some, our species as a whole is quite magical and extraordinary and indomitable. And despite our supreme stupidity sometimes, together we’ll work things out. It’s what we do.
And thirdly – in flagrant contravention, I know, to the trite, overused Hollywood stereotype of the ‘cold, passionless scientist’ – I have an unshakeable faith in the power of Love. Not that being touchy-feely to everyone will solve anything – I know it won’t. But that when all else fails, when there is no more hope, when against all the odds no sane animal or rigorously-logical robot would ever carry on, then – despite everything – the irrational, stubborn, absurd, self-sacrificing, blind, unstoppable, magnificent, all-conquering, unconditional love of one puny human-being can reveal itself to be one of the most formidable forces in the Universe. And, just because I know it’s not a miracle, but instead ultimately comes down to hormones and genetics and neural networks, does not stop it being completely mind-blowing and wonderful and glorious. That’s what I adore about science. Just because you discover how magic works, doesn’t stop it being magic…