Friday, November 23, 2012

The Boy in the Moon, by Ian Brown. St. Martin’s Griffin, 2009

The boy in the moon is Brown’s son, who has an extremely rare genetic disease that has given him both mental and physical handicaps. CFC- cardiofaciocutaneous- syndrome is not a hereditary disease but one that randomly crops up, so the author and his wife had no inkling that their second child might not be like their first one. Walker cannot speak or even swallow (he is fed through a tube directly into his stomach) or control his bladder or bowels, and requires constant care, which his parents (both writers and so home a great deal of the time) and a nanny provide for him at home for the first 11 years of his life. The hardest part of dealing with him, however, is not the diapers or lifting a child growing into his teens or the fact that they never get to sleep an entire night, but the fact that Walker hits himself in the head all the time. As one can guess, that’s agonizing to watch. And it finally comes to a point where they just can’t do it by themselves anymore, physically or emotionally; they have to place Walker in a home.

The first part of the book is biographical: Walker’s and their history, what they did and how they did it. The second half is spiritual and philosophical: what is the meaning of Walker’s limited life? What is the meaning of anyone with a mental handicap? What do they teach the rest of the population? The author gives us a history of how the mentally handicapped and mentally ill have been treated in the past- for the most part, horribly. He spends a good deal of time with the people of a group of communities called L’Arche, founded by Vanier in France forty years ago and extending into Canada and the USA now. In these small communities, the mentally handicapped are treated as the norm. They and their care givers have meals together, go out into the towns, and are all equals. It’s a fairly ideal situation, and there is a twenty year waiting list for people to get into these communities. The home that Walker is in isn’t quite as good as L’Arche, but it’s pretty good. Brown also makes great efforts to medically understand Walker’s disease; he has genetic tests done to try and get a positive diagnosis of CFD (he doesn’t) and an MRI to see what Walker’s brain looks like. He goes from place to place, trying to find out how Walker works, whether Walker has any sense of self. He keeps hoping that there is some way to ‘fix’ Walker.

In the end, Brown really gets no answers. Walker has made his father into a different person that he was before- less selfish, more attuned to others, more appreciative of his friends and family, and, finally, a person who has to accept that Walker cannot be fixed, he can only be loved for who he is. If he has a ‘purpose’, other than to just live, if may be that.

The book is, frankly, pretty grim. No matter how much love there is, taking care of someone who is severely handicapped is hard work and it’s very hard on families. That they were able to keep Walker home for over 10 years is testament to their devotion. But despite its grimness, the book is a well written meditation of what it means to have a family member with a mental disability. 

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