Boy scout I grew up in a tiny town on the outskirts of a small city in an insignificant Canadian province. I had a normal boyhood and, like a lot of Canadian kids, I loved the outdoors. I was terrible at hockey but won a “paperboy of the year” award. I was a piano-playing choirboy, but I wasn’t great at schoolwork and I barely managed to stay out of trouble. I was an enthusiastic member of the Cub Scouts, Boy Scouts and Air Cadets (winning a “best all-round cadet” award) and I took the mottos seriously, too. “Do your best” and “Be prepared” are good guidance for almost anything you face in life, but not everything because, while I was learning to camp and canoe and fly, there was a mutated gene waiting in my DNA. No amount of preparation or best effort could stop it from eventually presenting itself. Doctors call it SOD1. I call it The Beast.

I like telling people I was a pilot but I’m still a bit embarrassed about being an accountant. Imagine the lifestyle change!

From top gun to taxes When I left high school my grades weren’t good enough to go to university or be a pilot but, after a few years of odd jobs, I talked my way into the Air Force. When I applied I had no intention of being a pilot – I thought that dream was dead – but an aptitude test and a sharp recruiting officer said otherwise. A few years later I was learning to fly jets and helicopters. Unfortunately, I failed too many flight tests and was taken off the “flight line”. I was given a golden handshake on my way out the door and I used it wisely.

Red Arrows pilot first to land UK military jet in China

With all my military and aviation experience, I did what anyone would do – I went back to university and became an accountant. I had to go to night school first, to upgrade my high school maths courses, but it was worth it. I like telling people I was a pilot but I’m still a bit embarrassed about being an accountant. Imagine the lifestyle change! I went from flying military jets and chop­pers – a job they make Hollywood movies about – to sitting at a desk calculating your taxes payable. I did not fit in. I’m naturally assertive and aggressive, and I’m always ready to argue. I did OK for a while but I eventually left the industry.

What balance? Hong Kong survey shows most working people in city think work-life balance is getting worse

Bake off My resume was starting to look a bit patchy, so, with two sons to look after, my wife and I decided to swap traditional roles. I say “we decided” but in reality, she informed me. She accepted a position in Denver and, after moving our boys from Canada to Colorado, I became the not-so-typical stay-at-home dad. It was a good decision. My wife has been our family rock and I appreciated that she trusted me enough to wash the dishes and do the laundry while she pursued a career. She didn’t trust me to do the baking at first, but I eventually learned. I’m as good as her at making cakes and cookies but I’ll never bake bread like she can.

Odd one out I soon became bored with house­work and started volunteering everywhere I could. I was a scout leader, and a baseball and soccer coach. I taught children at the local school to read and enjoyed things like meeting my kids at the school bus, riding bikes with them, and walking my dog. It was a great time for us as a family. Three years later we moved to Hong Kong. We were excited to come but it wasn’t an easy move. As the trailing spouse I started volunteering right away but it was a very different experience. So many Hong Kong parents join committees and organisations to gain personal advantage rather than to make an honest contribution, and so many dads are absent – either travelling or at work – that I was the odd one out.

How Hong Kong dads battle to balance work and family - and why men ‘feel pressured to show commitment to their work’

Feeling sceptical I loved being a stay-at-home dad but eventually I was forced into retirement. My kids simply wouldn’t stay at home. I kept myself busy with freelance work and contract jobs but everything changed when I discovered two things: podcasts and Swine flu, avian flu and Sars all elevated my interest in science and medicine. I was listening to podcasts and reading science journals when I discovered Skepticism. Scientific Skepticism is a set of tools to help the non-scientist better understand the methods of science. There were Skeptical groups all over the world but there wasn’t one in Hong Kong. So I used and created one. In the past few years we’ve hosted dozens of monthly events called “Skeptics in the Pub” – which I like to describe as “a social event briefly interrupted by a public talk”. Recently, we formed a non-profit society to promote science-based medicine and evidence-based thinking in Hong Kong. Superstitious beliefs exert incredible power here, so it’s desperately needed.

Storytelling groups are encouraging Hongkongers to share experiences

Telling tales Around this time, I also discovered The Moth podcast, in which adults tell true stories to other adults. After I listened to a few I thought, “I can do much better than this.” I found some other storytellers and we started Hong Kong Stories. We’ve now got 1,500 members. We run weekly workshops, and more than a dozen live shows per year. I love the live shows because when you’re in front of an audience, you’ve only got that one chance to make it work. There’s a lot at stake. You reveal things about yourself in a true story and you give the audience licence to judge. There’s an authentic connection and the feeling can be addictive for both. When I’m on stage myself I find it incredibly powerful and liberating.

Facing the end I’m proud of these organisations I’ve helped to create and grow. I’ve made a lot of friends, and I feel like I’ve made an honest contribution to Hong Kong culture. The expat portion, anyway. And hopefully these groups will live on ... because I won’t. Last summer, at the age of 51, I started experiencing a strange weakness in my left hand. It gradually got worse. It used to be known as “creeping paralysis” but these days doctors call it ALS (amyotrophic lateral sclerosis). I call it terminally ill.

Nobel winner wants to die in peace at home, wife says, as she urges Hong Kong to change culture on end-of-life care

I’m determined not to deny what’s coming. Symptoms are progressing as expected and recently I’ve experienced a few “drops”, when I’m standing and my leg suddenly gives out. Talking is much more difficult and I’m likely to completely lose my voice within the next few months. As a storyteller, that’s not a day I’m looking forward to. When I can’t have a conversation with my friends, I’ll feel like my life is effec­tively over. I’ve probably got about a year left so I’m enjoy­ing my time and making plans to slowly fade away. Until then, I’ll do my best to be prepared for the ultimate end.