13 July 2015

Guest Blogger: Simon J Green

At 30, realising you’re going to live to a ripe old age is terrifying. I wrote earlier about someone who expects to die early being a driven, excellent employee. Consider this the sequel.

Recently I recognised I’m not going to die young. In 1984, my parents were told the life expectancy of their newborn with cystic fibrosis was roughly 20. Being honest, open parents, they and my doctors later informed me of this, and I grew up with a ticking clock. I wanted to know, and I’m glad I did, because it drove me to pursue greatness.

Weird thing is, technology today is awesome. In my life span of 30 years, I’ve seen treatments of cystic fibrosis improve so much that I am now expected to be an old fart, gumming chicken mash and yelling at hover cars as they pass my house in the clouds. Doctors are realising they need to start research into how our diets and lifestyles will affect old age: none of us reached past 50, so there’s no knowledge base.

A side effect of this happy evolution is my mind going POP!

I have spent the last two years transitioning my thought process from the expectation of early death to the expectation of a more predictable life span. That is a complex thing to confront. It’s like looking at a white wall and being told it’s blue. It’s like being reverse catfished.

I’ve only been conscious of this in the last six months. There was a dull strangeness throbbing in my brain annals, but it peaked when mild depression and extreme stress had me scratching ragged shallow cuts into my ankles and forearms. My wife pointed this out with some concern, compounded when I didn’t even realise I’d been doing it.

I love Australia’s healthcare system. A GP visit, a mental health plan and a bit of a ring around later, I found a terrific, cost-reduced psychologist, and together we realised I was looking at 30, 40 years of life more than I’d expected or planned for.

You’d think that’s a good thing, but it’s such a fundamental change to how I viewed the world. The reaper wasn’t my muse any more. I had to stop living for death, and live for life. I’m still soul searching, I still spend days feeling adrift, unfocused, unsure. There’s a dizzying array of options out there, and they honestly terrify and paralyse me. 

I worked out one thing: I’d like to maybe be driven by my eventual son or daughter. I’ll have to meet the kid first, obviously. For all I know, they might be a murderer. Still, being a Dad that helps them through their own life is pushing up my drive-o-meter gauge.

Living with a disability is a multidimensional ride of terror-joy. It makes life infinitely more complex, a layer over the usual experience. It can be awful, but it can also make it more interesting. Like the best super powers, it gives you strengths balanced with the weaknesses. As such, learning you’re improving can be a challenge. But it’s an interesting challenge. My shrink thought so.

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