This is a tribute to my friend Kylie, who passed away last Friday. She was one of the kindest, coolest, sweetest, toughest people I ever met, and she will be greatly missed.
I remember meeting Kylie for the first time within my first couple of weeks on Wade Ward, the adolescent unit of the Children’s Hospital at Westmead. Cystic fibrosis kids spent weeks on end on our ward, usually having a “tune-up”, sometimes fighting infections, and all too often spending their last days with us. Over the years, as treatments improved, less kids were passing away at the kids’ hospital, since they were transitioning over to adult care, and having transplants.
|Photo of Kylie by Stephanie Kent|
I remember the day I accessed her portacath for the first time. It was high on her chest, next to her collarbone, and as I was doing my thing, her top slipped down. I slid it back up in the interests of modesty, but it slid back down almost straight away. This happened again and again until, sensing my embarrassment, Kylie dead-panned, ‘It’s just a boob, James.’
We were still laughing about that about a year ago, when I last saw Kylie, all grown up but just as cheeky. We had a few private jokes, Kylie and I. One was more absurd and ridiculous than the others. 'Knock knock,' she’d say.
'Fire extinguisher who?'
'Stand real still while I hit you with this fire extinguisher.'
It wasn’t always a fire extinguisher – sometimes it was a chair, or a pot plant, or a medication trolley, or a 'cappa-cheeneo machine' in the worst Texan drawl she could summon. Some nights, in the middle of a hellish shift, she would phone the desk from her room, and when I answered it, she’d just say, ‘Fire extinguisher!’ and hang up. Then I’d hear that crazy cackle from her room down the hall, and it always lifted my mood.
And you could always bring a smile to Kylie’s face, no matter how much pain she was in, by adding the word ‘wang’ to any other word. The original idea came from a mitchell and Webb sketch, but we stretched the joke to the limits of its usefulness, and far beyond.
But there was so much more to Kylie than toughness, directness and laughs. She was so incredibly kind. Long after she would have been forgiven for curling up on the couch with a stack of movies, long after her countless post-transplant complications, she was still dragging herself out to speak at events, to support kids with chronic illness, and to improve her counselling and youth work skills. She once told me that since she was one of the last standing from her generation of CF kids, she felt the burden of responsibility to speak on their behalf. It wasn’t always a burden that sat comfortably up her little shoulders, but she accepted it nonetheless.
A year or two back Kylie asked me for my advice on writing a memoir. ‘I want to tell my story,’ she said, ‘but I don’t know what to write about.’ When I asked her what she meant by that, she said, ‘There’s so much. Should my book be about living with a chronic illness, having transplants and spending most of my life in hospital? Or should it be about my family having to accept that I won’t be around forever? Or should it be about my friends who’ve died, like Rachael and Lisa? Or maybe it should be about Ben. I guess there must be other people like Ben out there who love someone like me. Maybe there’s things that they need to know. All I know is that this book needs to help people.’
‘Can’t it just be about you?’ I asked. ‘You’ve got quite the story to tell.’
She just shrugged. ‘I’m just me,’ she said. ‘I’m not that exciting.’
I disagree, Kylie-wang. I thought you were fascinating.
Cystic Fibrosis Australia can always use more support – please go here to find out how you can help.