Why my brother won’t read the book I dedicated to him

Music is our shared love. I took her to see Smashing Pumpkins in Melbourne when she was 15. That was in 1996, and I was heavily into Guns N’ Roses, Pearl Jam, Metallica, rockier stuff. But Mum didn’t want a 15-year-old girl going unescorted to a concert. So I escorted her – and I got a free ticket.

Shivaun began to suffer from anxiety and depression in her late teens. I found out about it from Mum. I’d like to say I was compassionate. I probably wasn’t. If you don’t have a mental health issue it’s hard to understand. You don’t see the symptoms. She has a tattoo on her arm that reads, “Don’t panic” – a line from her favourite book, The Hitchhiker’s Guide to the Galaxy.

I haven’t read her book Tin Heart, which is partly inspired by my liver transplant, and I’m not going to read it, but that doesn’t matter. The fact that people will be talking about it does. Shivaun thought I’d be upset about her drawing on my experiences for her book – I don’t know why. Anything that can bring the importance of organ donation to the fore is good.

SHIVAUN: When I was in primary school Leigh was at the moody teenage stage. Combine that with a spoilt younger sister and I can understand his behaviour back then, although at the time I hated it.

But I looked up to Leigh in other ways, particularly for his guitar playing. I wanted to be as good as him. I got music lessons, Leigh never did, but he was far more talented. I remember once, when I was still in primary school, marching into his room and asking him to teach me the lead solo of Guns N’ Roses’ November Rain. And he looked at me and went, “Do you know how hard that is?”

He took me to my first ever concert, Smashing Pumpkins, in 1996. He doesn’t like the Smashing Pumpkins. I wore that as a badge of honour at school. It was a big thing to be able to say, “I’m going to Melbourne, my brother is taking me to this big concert.”

In 2008, Leigh had his large intestine removed because he had ulcerative colitis. Five years later, he was diagnosed with primary sclerosing cholangitis, a disease of the bile ducts that can only be cured by a liver transplant. He became so ill in 2014 that he was placed on a waiting list for a transplant. He waited four months. I expected it to be a lot longer. He was going downhill so quickly. It was scary.

That was the first time I faced the idea that someone I loved might die. Because he’s very independent and strong, this enables me to say, “Okay, it’s fine.” But it wasn’t. Leigh doesn’t complain. He has a “glass half-full” attitude, and him forming a band, Riffinery, in 2011 illustrates that. Having faced his mortality, rather than wallowing, he went, “Okay, I’ve always wanted to be in a band, it’s my top bucket list item. I’m going to be in a band then.”

When we first went to see him in the ICU after the transplant, he was terribly high on Propofol and we were saying, “Has he had a personality transplant instead of a liver transplant?” because he loved everyone and everything was wonderful. But I couldn’t get it out of my head that at that precise moment there had to be a family somewhere that was feeling the exact opposite. How do I deal with that? How does he, as the recipient, deal with the knowledge that someone had to die for him to continue? These thoughts were the starting point for my second book, Tin Heart. I was scared to tell him at first. I thought he wouldn’t be happy that I was using his experience.

I gave him a copy of Tin Heart and wrote a personal dedication saying, “Thank you very much for allowing me to pimp your story out for profit, please enjoy this book you’ll never read.” I had to show it to him because I knew he wouldn’t even open it to check the dedication. Normally, I wouldn’t choose to hang out with people of his political views. But I know that Leigh’s a good person and even though we disagree ideologically, I see how he interacts with the world. He is a good human being.

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