Yesterday, I posted about my old boss Dave McCaughan coming to speak at our small, almost no-name event called Fuze Nights for social impact next week. He’s quite the prolific speaker and I realised he’s spoken at TEDxJapan on Asian youth trends being a strategic planning director for McCann around the region. What I hadn’t realised is he also spoke at the same event on behalf of another friend of mine, Hiro Fujita. See, Dave also helped Hiro set up END ALS as a non-profit and a movement to address the issue of ALS in Japan.
The talk at TEDxJapan that featured Hiro was a short one, but one that took the audience through the journey of Hiro’s life before he was diagnosed with ALS and his life since coping with the disease. If I’m honest with myself, I sort of knew that this video was out there but I never really got around to watching it. The uncomfortable truth is that I didn’t want to watch it.
I’m well versed in the pre-ALS Hiro. I grew up next to him (literally living next door to him) and I still haven’t quite forgiven him for trying to pick fights with the older, bigger boys in the neighbourhood when he was 8 and I was 10. And, fast forward to our adult lives, he remained the smart mouthed, loveable rogue that despite whatever trouble he got into, his winning charm and personality always seemed to get him out of it.
Post-ALS Hiro is not someone that I’m familiar with, know or in fact, wanted to know. And its easier when he’s in another country. It means you don’t have to face him, or specifically his condition. It’s tremendously cowardly of me, in fact.
But I couldn’t really run from the reality of Post-ALS Hiro any longer with Dave landing on my shores with his stories of his work with END ALS. As part of my research into my speaker, this video came to light and in some ways, I got to meet the new Hiro.
Of course, in his own words, the old Hiro is still there. While he is trapped in a body that is failing him, the mind and things that make up “Hiro” are still there. But I beg to differ because, as you’ll see from the video, the Hiro that is present on the TEDx stage is so much more than the Hiro that I knew.
The thing that particularly struck me about the new Hiro was not the fact that he chose to fight each day to survive the disease, but the reason why he is fighting - he simply felt he hadn’t contributed enough, if anything, to society yet.
ALS took so much away from my friend, but at the same time, it gave him so much more: a purpose to fight for ALS research and the rights of its sufferers in Japan. And in this, the world is better for it because through his own advocacy from a wheelchair, immobile, and with his failing body, he has sparked a movement, leading new thinking in attitudes towards ALS in Japan and beyond.
I find it inspirational because it really shines a light on attitude. You can choose to play life as a victim (“I know I should do something positive, but [FILL IN THE EXCUSE] stops me from doing it.”) or you can make the change you want in the world.
I still don’t know the new Hiro, I’m ashamed to say, but I would be honoured if he still called me friend.
Please, watch the video and if you want, find out more about how you can get involved by visiting https://end-als.com/.
You will also be able to hear Dave McCaughan speak at our upcoming Fuze Night at Artistry on September 10 at 7.30pm. Having worked with Hiro to build END ALS, he has a unique insight into how to build a movement and a social cause. You can register for the event here: Fuze Night September 2015.