Who inspires you…?

Last week during the floor walks, ‘Who inspires you?’ was submitted as a question. That could be a difficult question since there are so many people who have made a tremendous difference in human rights, the planet, health, poverty, innovation, leading huge organisations, and so much more. While I’ve got a long list of people I admire, there’s a big difference between admiration and inspiration. Anyway, I found myself struggling to answer the question. Not because I didn’t have an answer, but because I choked up when I tried to express it. So, I said I’d blog about it, and here we are.

For me, ‘Who inspires you?’ is a very personal question, it’s familial. I’m one of four siblings, with one older sister and two younger ones. Lisa’s the youngest and she’s the answer – my inspiration.

Lisa’s got a great sense of humour — she loves to laugh and make others laugh — and almost always wears a smile. She’s obsessed with her five nieces and two nephews, loves travelling with us (she’s been on the vast majority of cruise holidays we’ve taken since I started at Carnival 17 years ago), and quirky as this sounds, she’s a bonafide fast food connoisseur. Lisa also has an extremely rare genetic disorder called MosaicTrisomy 9. It means that some of Lisa’s cells have 3 copies of chromosome 9 instead of the usual pair. It also means that Lisa was dealt a bum hand in life.

Among other things Lisa has severe intellectual limitations and physical struggles due to stunted bone development and joint functionality which precludes her from being able to run, jump and do a lot that we take for granted. She also has curvature of the spine, vision problems, poor hearing and digestive issues.  Difficulty expressing herself — she’s kind of got her own language that we’ve learned over the years through deductive translation — and just to pile it on, Tourette Syndrome. But, I suppose you could say that Lisa’s lucky. I’ve read that only 0.1% of those with the condition survive to child birth. And for those who do manage to survive, the average life expectancy is less than one year.

Lisa wasn’t always my inspiration. When I was a kid she was a source of embarrassment, shame and anger.  Despite having very loving parents, they couldn’t convince (an adolescent, selfish, self-absorbed) me that I shouldn’t feel sorry for myself. Lisa looked different…she threw very public tantrums when people couldn’t understand her…she got sick when we ate at nice restaurants…she asked the same handful of questions over and over…she went off on Tourette-induced swearing tirades…my parents spent way too much time focused on her and ignoring their other three kids. Woe was me.

I really wish I could point to a singular moment or event where a light-bulb went on in my head, but it didn’t. Sure, I always loved her and felt protective, but getting me to a place where I accepted Lisa for who she was, and eventually seeing her as an inspiration, was gradual. Maybe I just needed to mature into my teenage years, or witness enough instances of people disregarding or disrespecting others because they were ‘different’. Or maybe I just needed to see Lisa get up and keep going with her trademark smile, day after day. Despite the physical pain. Despite her brain not letting her think freely. Despite her frustration when people didn’t understand her. Despite the sadness she felt when people treated her badly.

It’s now over three decades since it became clear that Lisa was, and is, amazing…even when she still asks the same few things over and over!  What she‘s accomplished with what she’s been given is mind boggling.  I honestly believe that if Lisa hadn’t been born with mosaic trisomy 9 she could have been President of the United States, a Nobel Prize winner in whatever field she picked, AND an Olympic Gold medallist in any sport she chose.

So when I’m having a bad day, when I don’t feel like giving something my all or using my abilities to the fullest, when I feel like I’m being treated unfairly, I think of Lisa and wipe away the negativity. I think of Lisa and know I can take on whatever the world throws my way if I show even a fraction of the perseverance that she shows every single day. I think of Lisa and get inspired.

Josh