Day #644: Perspective

What colour is the shoe pictured above?

With complete confidence, I’d say it is grey with mint-green coloured laces.

After all, what could be simpler than describing the colour of an everyday object. With all of the complex and contentious things to argue about out right now, surely on this matter of shoe colour we can all agree?

Well, apparently not.

Apparently, a vast number of seemly ordinary people with human eyes just like mine, would say this shoe is pink and white.

Pink! PINK!?

I pity these completely bonkers people with squiffy eyes who have clearly never watched hours of ColourBlocks on the TV with their kids, learning what the different colours are called.

Except… it turns out that they are right. The shoe really is pink and white.

Much like the picture of “that dress” which went viral some years ago, this shoe caused arguments between friends and couples all over the world.

(And yes, I was wrong about the colour of that dress, too)

It never ceases to amaze me how much our experience is actually shaped by our individual perspective, not on the situation itself.

Here’s one perspective of having MND:

Through sheer crappy luck, I’ve acquired one of the worst possible diseases an adult can get. Perhaps not the #1 worst (google Familial Fatal Insomnia if you really want some nightmare fuel) but Motor Neurone Disease is definitely in the top five.

Quality of life scores for MND are amongst the lowest of any illness. The mental and physical suffering involved in this wretched thing is extreme and pretty much guaranteed. Progressive and unstoppable paralysis, followed by dysphagia, dysarthria and then gradual suffocation – those are my marching orders.

Worse still, all that lovely suffering is then generously multiplied and divvied out amongst all the people I love the most, who have to watch me slowly waste away with nothing they can do about it.

To top it off, my son will grow up without his Dad. It tears me apart.

Here is another perspective:

I had the audacious good fortune of being born into a loving family within a developed, prosperous country. Indeed, according to Cecil Rhodes I won first prize in humanity’s great lottery.

For 40 years I had before this diagnosis, I was one incredibly lucky bastard.  In many ways, I still am.

I grew up in the peace dividend of the 1980s and 90s.  Unlike almost every generation before me, I wasn’t living in fear of being called-up to die at the end of a rusty bayonet in some overseas war.

My generation was the first to be able to travel the world without being a squillionaire. During my 20s, I bunked off work for 6 months to have a ski season in France with my pals. What a lucky ****.

Just to add insult to injury, we then proceeded to live in paradise for almost 10 years, next to a glorious surfing beach in Sydney.  A century ago, none of this would’ve been possible.

I never had to experience poverty, hunger or violence.  For the vast majority of human history, this would’ve been quite normal (assuming you even made it past childhood without being plucked out of existence, covered in buboes).

I always found meaningful employment – and I was good at it.  We didn’t have to face financial ruin when this unwelcome visitor knocked on our door. 

NB – I just typed that I was “born with a good brain in my head” but then deleted it, as recent evidence has somewhat debunked this theory. Let’s just say that most of the neurones were good.

I’m surrounded by caring, inspiring, loving friends and family who desperately want to help. So many others have to face MND almost completely alone.

I spent today with my beautiful wife and my healthy, joyful son.  We live in a honeypot village in one of the most beautiful parts of England. During my slow daily waddle around the block, I often stand there, slack-jawed, gawping at how unfathomably gorgeous this place is.

Recent advancements in technology have given those with MND amazing digital voice clones, brain-computer interfaces, and even the prospect of robotic limbs! This incredible stuff has all emerged within the last couple of years, and progress is ever accelerating.

What an incredible time to be alive.

So yes, I have a dark and shadowy road ahead. But those fearful colours can be deceiving, just like that pesky shoe.

When I do occasionally tear my attention away from the abyss ahead of me, I realise my back is warmed by a blazing light behind me – a rich life lived. And those dark shadows on the road get no rest, being endlessly chased around by this fantastic glow coming at me from both sides – my wonderful friends, family and support team.

PS – I don’t care what they say, that sodding dress was gold and white. And you can’t argue with me because I’m dying, so mneh!