Readers of this blog and people who’ve engaged in any kind of general, passing conversation with me will know that I came back from the Byron Bay Writers Festival rabbiting on about how I discovered knock-out author Megan Stack. It’s now day two of the Brisbane Writers Festival and I think I’ve found the male Megan Stack equivalent: Canadian journalist Ian Brown.
With a run-of-the-mill Anglo-Saxon name and a topic that sounds bleak and that has the potential to make us all a little uncomfortable, it’s kind of understandable that Brown’s first festival session was only half full. I’m just grateful that I was in that small crowd, because the journalist and author was unbelievably outstanding.
Brown’s not particularly known in Australia, but has a swag of accomplishments and awards to his name in Canada (including recently beating a strong field that included Margaret Atwood for some honours). He’s speaking at the festival about both his food blogging tour and the slightly heavier topic of living with a son who has Cardio-Facio-Cutaneous Syndrome (CFC), a rare disorder that effectively traps his son, Walker, as an infant for life.
At the time of Walker’s diagnosis, there were only eight known cases of CFC, making it one of the rarest of rare syndromes. The disorder and its affect on Brown and his family is documented in his award-winning book, The Boy in the Moon. From the semi-medical (no joke) diagnosis that he’s a ‘funny looking kid’ (FLK) with no eyebrows (a trademark of the disorder) to the ‘Chernobyl’ of diaper rash Walker experiences, Brown acknowledges and investigates the things we are afraid to ask and even more afraid to discuss.
He debates with his wife whether if they knew then what they know now, would she have aborted Walker as a foetus. He talks about how he considered double suicide, by taking Walker with him out into the snow. He examines the complex issue of how we now have the technology to save lives that in the past wouldn’t have been possible to, but little support for them ongoing.
He admits that as the father of a disabled child, you constantly feel guilty about the state of your child. And he asks what the value and meaning of Walker’s life is, given that he is now a 14-year-old boy who looks about nine and who has the mind of a two-year-old. Walker has to wear special cuffs and a helmet to prevent him from constantly hitting himself and, as Brown says in the book, ‘Sometimes watching him is like looking at the man in the moon—but you know there is actually no man there. But if Walker is so insubstantial, why does he feel so important? What is he trying to show me?’
Brown also argues that disorders such as CFC make us so uncomfortable because they’re a walking metaphor of the unpredictability and randomness of our own lives. He writes, ‘All I really want to know is what goes on inside his off-shaped head. But every time I ask, he somehow persuades me to look into my own.’
It wasn’t all bleak, though. He talked about how if Walker were here, he’d enjoy our company, would be pottering around, and would most likely be looking down at female audience members’ cleavage. He’d asked doctors in the past if that was part of the disorder. No, they said, that’s specific to Walker.
What made a panel about a book about a profoundly disabled boy and the affects of this disorder on Brown, his wife, and their daughter is Brown’s normalcy, his exquisite eloquence, and his honesty. Brown spoke at length about a variety of topics, answered questions, and went off on tangents, and we hung on his every word.
I’ve never witnessed a panel where an author was clapped so enthusiastically and for so long. Nor have I ever witnessed one where the author was given a standing ovation. No, not even Megan Stack’s. Both happened with Brown. Festival director Jane O’Hara was seated just a few rows behind me for the session and I said three things to her as we walked out:
- He. Was. Incredible.
- Thank you, thank you, thank you for bringing him here.
- Tell me he’s speaking again at the festival.
It turns out he is. His other panels are at 1pm on Saturday and 2.30pm on Sunday (the latter is about his food blogging tour, so may be lighter but no less compelling).