I waited some days after reading The Boy in the Moon before attempting to review it. This was for two reasons. One, I felt a bit overwhelmed by the remarkable and slow-burning energy of the work and thus, toddler-like, I subconsciously ran and hid from it. And two, I was distinctly aware of my emotional response to the story; it would have shaped my writing into pink gooey praise. You see, my initial reaction was to meet the affecting extraordinariness of the book with a torrent of gushing praise, but knew that sort of review wouldn’t get within cooee of doing it justice.
The Boy in the Moon is aptly subtitled A Father’s Search for His Disabled Son. Thirteen years ago Ian Brown, a Canadian features journalist and author, was forced to abandon his fairly conventional existence when his second child Walker was born. Walker has a genetic mutation called cardiofaciocutaneous (CFC) syndrome, which loosely translates as ‘heart-face-skin syndrome’. The disorder does physically affect these parts of the body, but its most severe consequence is to the brain, resulting in severe mental delay. CFC is so rare that doctors call it an orphan syndrome: about one hundred people around the world have it. Walker can’t talk, is in diapers, and will probably never develop mentally beyond the equivalent of a two-year-old. Brown, in the gutsy style he employs for the entire book, describes Walker thus:
He has the body of an old boxer: square, really, like a shirt box on end. His arm cans – rigid fabric tubes that prevent him from bending his elbows, so he can’t deliver smashing upper cuts to his skull all day long – prevent him from developing big biceps, but he has tough lumps of muscle on his forearms. His face is heavy in the lower jaw, full in the cheeks: he has no chin to speak of. Curly hair, but no eyebrows, where he’s bald as a spaceman. A wide nose, characteristic of this syndrome (and of many others, too). Thick lips, especially the lower one, ‘patulous,’ the doctors called it, back when he was still a novelty. Square teeth, yellowed from the formula, but undecayed. Hands like gloves, huge for his size.
From the moment Walker was diagnosed with CFC until the time of writing, Brown has investigated the syndrome, and has thus been on a sort of semi-desperate pursuit of his son. He wants answers to questions that change as he asks them. He spends much of the time he isn’t caring for Walker (a full-time role shared with Johanna) speaking with doctors, philosophers, philanthropists and other CFC-affected families. This broadens both the scope and the appeal of the book, as Brown’s journalistic credentials allow us to enter the realms of science and social theory without any shift in style or structure.
The writing itself is near-flawless. Brown attempts to remain somewhat impartial, at least on the surface, but we see straight away that he is plugged into this story with every iota of his being. Yet this only adds to the allure of the story. We can see the personal nature of the writing when Walker is first diagnosed: ‘The shock was similar to losing one’s wedding ring in the sea: you knew it was gone, it was unrecoverable … One day Walker was a part of life, the next he was a misstep of evolution.’ And also in the depiction of a girl with cerebral palsy:
Isabelle, immobile at the end of the table, shone like a benign star, watching. She had only two ways of communicating: eyes rolled up, for yes, and down, for no; sometimes she did one when she meant the other, just to play a joke on people. It was one of the few jokes she could make, but she made it. She was pinned on her wheelchair like a lepidopterist’s specimen, but like a butterfly she was never ungraceful.
Also, as an interesting aside, I found myself grateful that Brown is Canadian. Similar to many of my favourite Australian writers, he is dark and witty and acerbic and self-deprecating, and this suits the subject matter perfectly.
Who would have thought one of the reads of the year would be a book categorised (oddly) by publishers as under Memoir/Health? Yet Brown’s ability to weave together description with introspection and dialogue is to be envied, and the quiet force of this book is like a container ship, or a drifting iceberg. Indeed, Brown is so full of tenderness and so willing to shift and harden and then shift again, that I found myself perversely envious of him and others responsible for disabled loved ones. But this isn’t so strange – it is the underlying contention of this book: that people like Walker have a purpose in our evolutionary project, that they might be a small step towards the development of an improved ethical base in a few members of the human species. As Brown says, ‘The purpose of intellectually disabled people like Walker might be to free us from the stark emptiness of the survival of the fittest.’
The Boy in the Moon is one of the most truthful books I have ever read. You know, one of those stories that you recognise not just with your eyes, or even your mind. Jack Kerouac talked about it when he said,
I want to work in revelations, not just spin silly tales for money. I want to fish as deep down as possible into my own subconscious in the belief that once that far down, everyone will understand because they are the same that far down.
Ian Brown has written an unadorned tale about his son Walker, and by doing so allows us to see far beyond our own everyday gaze. Sadness and joy intertwine and significance whispers from every page. We are fortunate to meet Walker, the people around him, and his extraordinary father.
Publisher: Scribe Publications
Sam Cooney is a text-based work first published in Melbourne in the mid-eighties, recognised for his poorly-designed cover and ad-hoc composition.