Tuesday, May 13, 2014

Kylie - a tribute

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
Kylie was cheeky. Tiny and cheeky, and we connected immediately. She had a laugh like an ewok, all giggly and manic, and a quick smile. But she also had toughness and directness like you wouldn’t believe. On more than on one occasion she had to call me into her room to read me the riot act. ‘Listen, I know you’re having a shit night out there,’ she told me one time, pulling her oxygen mask to one side, ‘but at least you can breathe. So why don't you take a breath, shut the f*** up and get on with whatever it is you gotta do, because no matter how bad your shift is, you get to go home in four hours. Now, I’d appreciate it if you’d hand me that magazine on your way out – I’ve got boys to fantasise about.’

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.

'Who’s there?'

'Fire extinguisher.'

'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 a
nd 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.


djboz said...

Beautiful memories of an amazing girl. unfortunately for the world the most beautiful things often do not last.

Vicki said...

Hugs my man xxx I know how special she was to you xxx

Sheryl Gwyther said...

A beautiful girl, Roy, Thank you for writing this about your friendship. It really touched my heart. xx

Amanda said...

A beautiful tribute Jim. Like you, I looked after many CF kids in the Children's Hospital (then Hall Ward at Camperdown in the 80s before lung transplants) and we all had a special place in our hearts, often broken, for these very special beautiful kids.

Pamela Briant said...

Thank you writing this lovely account of Kylie. You have captured her personality beautifully in your words. To me her laugh was a cheeky chipmunk, but an ewok works too, just hearing it would make me laugh. Her sense of humour and wit could always catch me unawares. She was so generous with her precious time, and shared it leaving us all with our own special memories of her. I remember the wang thing. I had forgotten it until you wrote it. Another was everything was 'full' this or 'full' that. She was not one to beat around the bush, if she had something to say, she would say it. Reading your tribute was the first time I laughed since hearing that Kylie had taken her last breath. Thank you, thank you for writing this lovely account of who Kylie was to you.

Jason Buckley said...

That last paragraph? The Lisa mentioned? That was my sister. And over the last six or seven years - especially the last five since we lost Lisa - Kylie became a sister to me too. I have a phone full of texts with our own in-jokes and nonsense, much like yours. Thank you for taking care of her (and, I suspect, probably Lisa). I know you must be heartbroken right now, because everyone who ever met that girl is feeling the huge loss.

james roy said...

Yes, Jason, that was your sister I was referring to. I didn't want to include surnames out of respect for privacy, but yes, I did nurse Lisa as well. I'm sure you're feeling Kylie's loss more acutely than most. My thoughts are with all the families of kids who have passed away from this kind of chronic disease.

Naomi Benedetti said...

Beautiful words James - they made me cry.

Carole said...

Kylie, is remembered as a young art student in my class many years ago. She was just like all the other kids but moaned a lot less than they did even though she would have had a lot to moan about. She enjoyed life and the other students loved her. As has been told she was never backward in coming forward and will always be remember by me as that young enthusiastic student with the happy face. Jim, is sounds like she remained that positive person and she was lucky to have you caring for her. My thoughts as with her family at this sad time.

Julia said...

This is lovely James. I have not commented on anything written about her, but I really appreciated how you have acknowledged her silliness as well as her bravery. Both of which brightened my days from school friend to bridesmaid. I met you many times over the years at Westmead and there was always a laugh. Thank you for caring for her and for being a wonderful friend, she showed me 'Town' with much pride. Oh yes, and I have the honour of introducing her to Mitchell and Webb. We are all so lost without her, but reading this gave me a smile. Thank You. x