The Boy in the Moon

by Ian Brown

Walker’s intellectual shortcomings, I learned several weeks later from Dr. Robert Munn, his neurologist, occurred most likely in his neurons, at a neurochemical level—the level science cannot yet see, much less understand. There was some new evidence, Munn said, that some children whose faces develop abnormally have abnormal brain stems as well, with the result that their serotonin uptake mechanism is flawed—making it harder for them to feel pleasure, and possibly harder for them to learn. “But we don’t know much about the brain,” Munn said. (There was that phrase again.) “The neuropathways we can’t see very easily. There are all sorts of changes in Walker’s brain that are neuro-chemical. And that’s the next path we have to take.” The very nature of the brain has stymied research into the brain. Brain matter, Munn explained, was too jelly-like even to be dissected in its natural state, and the chemicals that made it cut-table altered the crucial neurochemicals within. Because of the body’s brain-blood barrier these neurochemicals aren’t present in blood samples, either. Even spinal fluid, another potential way to study the neurochemical brain, is altered by the sedation necessary to draw the fluid in the first place. It was as if Walker’s brain didn’t want to be studied.

  Munn was a youthful-looking man in his forties, casually dressed, with an office out on the edge of the city, not too far from where Walker lived. He often made house calls to the home: several of the residents suffered seizures. Walker didn’t, usually, but his self-mutilation was a mystery. “I think it’s a compulsive need to create a sensation,” Munn said, “whether it’s pleasant or unpleasant. And I think there are elements of frustration.” But that was speculation.

  “Seems hopeless,” I said.

  “Nobody’s hopeless to me,” Munn said. “If you pick up a kid in a wheelchair and make him or her smile, you’ve done something. You don’t have to be a hero.”

  His wife had died of cancer early in their marriage, and now he devoted himself to the brains of disabled children. From one unanswerable question to another.

  Without a knowable brain, was Walker a knowable boy? If he wasn’t knowable, what was his value? I talked about it endlessly at home, but Johanna didn’t see the point. He was the boy he was, she was his mother. Without Walker in the house all the time, soaking up her every minute, she had begun writing more again, concentrating on Hayley, exercising. I wondered what shape the missing boy took in her head, in her body. She took compulsively to crosswords, sudoku, Brain Age, a massive two-thousand-piece jigsaw of Munch’s The Scream, any pastime that required close obsessive attention. I tried to read Foucault’s History of Madness and watched her secretly from across the room, wondering if she was bored.

  Had there ever been a point in Walker’s infancy when the doctors realized how hard his life would be? If so, they never mentioned it. Quite the opposite, in fact: in the early days of Walker’s life, when he struggled to put on weight and survive, the only urging I ever received from his doctors was to greater and more assiduous effort. The words of his pediatrician, Norman Saunders, still rang in my ears: We do want this boy to survive, don’t we? It turns out we did, though I wasn’t always sure at the time.

  Dr. Bruce Blumberg, a member of the team of geneticists that first identified CFC syndrome, has counselled parents on similar genetic dilemmas for thirty years, most of them at Kaiser Permanente Hospital in Oakland, California. He admits optimism is the default position of his profession. Imagine the scene, after all: the distraught parent of a seriously compromised child, exhausted from riding the Internet all night and full of fear; the life of a baby is hanging in balance. “More often than not,” Blumberg told me, “to achieve a balance point, I need to emphasize the positive. At the same time, the parents are keen to hope. And it’s easier to be positive. It’s easier to smile. I’ve been through stuff with patients. It’s hard. So I think for doctors it’s avoidance at times.” If he couldn’t solve the problem, at least the parents could be reassured. If Blumberg urged parents to have such a child, he risked sentencing them to a life of hell.

  But that dilemma is also artificial. The real problem, Dr. Blumberg said to me that morning in his office in Oakland, lies in our unwillingness to accept that a handicapped life has real value as is—especially if the value requires that you get down on your hands and knees and look for it. “Families often do find raising a handicapped child a gift, despite the hardship,” he said. “It creates new relationships, reveals new capabilities. The trick is to give up the idea of the potential child and accept the actual child.”

  Blumberg is familiar with medical catastrophe. He was blinded in one eye as a boy while helping his father spread fertilizer. He went on to become a doctor via some of the best universities in the world. “It’s arrogant of us to assume that these states are inferior to the normal state,” he said. “If you have an IQ of 60, that’s a serious handicap in our society. But if you’re a migrant farm worker, it might be fine, plenty. So who is to say that the state of non-verbal rapture you describe in your son—who is to say that that is inferior? Who is to say that? We’re arrogant enough to believe that sentience is all that counts. It’s not all that counts. A sequoia is not a sentient being. But they count. There is nothing more magnificent. It doesn’t require me to think about it to be in awe of it. I don’t want to minimize the difficulty of raising a handicapped child. It says something about the place we have reached as a society that doing so creates a serious handicap in these contexts. But it’s just a mistake to think of them as lesser than. There’s no lesser than. There’s just different from. It isn’t just great minds that matter. It’s great spirits too.”

  Every time we meet someone who is severely handicapped, Jean Vanier believes, they ask two questions: Do you consider me human? Do you love me? The more we meet the handicapped on their own ground, Vanier believes, the more our answers evolve. We begin in fear of their appearance and behaviour; move on through pity; pass through the stage where we help them and respect them, but still see them as lesser beings; until finally we experience “wonderment and thanksgiving,” and “discover that, by becoming close to disabled people and entering an authentic relationship with them, they transform us.”

  In Vanier’s last and highest stage of consciousness, “we see the face of God within the disabled. Their presence is a sign of God, who has chosen ‘the foolish in order to confound the strong, the proud and the so-called wise of our world.’ And so those we see as weak or marginalized are, in fact, the most worthy and powerful among us: they bring us closer to God.”

  I wish I could believe in Vanier’s God. But the truth is, I do not see the face of the Almighty in Walker. Instead, I see the face of my boy; I see what is human, and lovely and flawed at once. Walker is no saint and neither am I. I can’t bear to watch him bash himself every day, but I can try to understand why he does it. The more I struggle to face my limitations as a father, the less I want to trade him. Not just because we have a physical bond, a big simple thing; not just because he’s taught me the difference between a real problem and a mere complaint; not just because he makes me more serious, makes me appreciate time and Hayley and my wife and friends, and all the sweetness that one day ebbs away. I have begun simply to love him as he is, because I’ve discovered I can; because we can be who we are, weary dad and broken boy, without alteration or apology, in the here and now. The relief that comes with such a relationship still surprises me. There is no planning with this boy. I go where he goes. He may be a deleterious effect of evolution as far as a geneticist is concerned, but he has few peers as a route to developing what Darwin himself in The Descent of Man called the evolutionary advantages of “the social instincts … love, and the distinct emotion of sympathy.” Darwin’s opponents pointed out that man was weaker than the apes, and so there was no logical way he, man, could be the result of the survival of the fittest. But evolution is smarter than that, Darwin replied. “We should … bear in mind that an animal possessing great size, strength, and ferocity, and which, like the gorilla, could defend itself
from all enemies, would not perhaps have become social: and this would most effectually have checked the acquirement of the higher mental facilities, such as sympathy and the love of his fellows. Hence it might have been an immense advantage to man to have sprung from some comparatively weak creature.”

  My own goals are modest: to step from time to time into Walker’s world; to come to know a few intellectually disabled people (rather than simply permitting them to live in my milieu); to face my fear of the broken people who are

  The Other—not to fix them or even save them, but merely to be with them until I stop wanting to run away. At my most optimistic and confident I hope those might qualify as a few steps toward what the evolutionary biologist Julian Huxley imagined when he wrote his famous essay “Evolutionary Ethics” in 1943. A clearer ethical vision as human beings, Huxley writes, will never “prevent us from suffering what we feel as injustice at the hands of the cosmos—congenital deformity, unmerited suffering, physical disaster, the early death of loved ones. Such cosmic injustice represents the persistence of chance and its amorality in human life: we may gradually reduce its amount but we assuredly shall never abolish it. Man is the heir of evolution: but he is also its martyr.

  “But man is not only the heir of the past and the victim of the present: he is also the agent through whom evolution may unfold its further possibilities…. He can inject his ethics into the heart of evolution.”

  The face of God? Sorry, no. Walker is more like a mirror, reflecting much back, my choices included. For me—and this is the grandest and yet most consistent way I can think of him, amid all the others, head bonker and beagle and hyper-kinetic maniac and gurgling drooler and intermittently curious boy and sad sweet son—Walker is like the vessel Wallace Stevens wrote about:

  I placed a jar in Tennessee,

  And round it was, upon a hill.

  It made the slovenly wilderness

  Surround that hill.

  The wilderness rose up to it,

  And sprawled around, no longer wild.

  The jar was round upon the ground

  And tall and of a port in air.

  It took dominion every where.

  The jar was gray and bare.

  It did not give of bird or bush,

  Like nothing else in Tennessee.

  I realize it’s not much to go on, not much of a light to see by. It easily wavers. But it’s the best I can do.

  We waited for hours again when we returned for that second try at an MRI of Walker’s brain. Once again I wheeled him up and down the halls in his fancy red stroller, up and down and out the door into the longer hall and back, up to the coffee stand and back. Three hours ticked by.

  I finally abandoned the stroller, and sat down with my back to the glazed brick wall in the hall next to the waiting room. Walker was standing two feet away, where the wall turned a corner. Olga was somewhere behind him.

  Suddenly he swooned, and fell, like a slipping stack of plates, into my arms. I saw him look and aim himself. There was no mistaking what was happening: he was having a seizure. I had heard accounts of seizures in other CFC children, and the staff at his home had thought on two occasions he might have had a mild attack. But I had never seen anything like this, not in Walker. His eyes began to twitch back and forth like metronomes; his arms jerked faintly. His heart, I could feel it through my legs, was racing like a robin’s. He was trying to look into my eyes. He looked scared.

  “Do you need some help?” another parent asked from the vestibule, but I shook my head no. I knew what to do. I knew to cradle his wan body in my strong body, wait with him while the shuddering passed, be there when his twitchy eyes found me again. Two minutes went by. It was unlike any other thing. A random and uncontrolled firing of neurons: that is the medical explanation of a seizure.

  But it wasn’t that which filled my mind. I held him in my arms as quietly as I could, and I thought: this is what it will be like if he dies. It will be like this. There was nothing much to do. I didn’t fear it. I was already as close as I could be to him; there was no space between my son and me, no gap or air, no expectation or disappointment, no failure or success: only what he was, a swooned boy, my silent sometimes laughing companion, and my son. I knew I loved him, and I knew he knew it. I held that sweetness in my arms, and waited for whatever was going to happen next. We did that together.

  acknowledgements

  I wrote this book with the help of deep ranks of people too numerous to mention here. In addition to the people who spoke to me for this book, to explain the complications and implications of Walker’s condition, I am especially grateful for the specific help of the late Dr. Norman Saunders, Walker’s pediatrician, and Sally Chalmers, his head nurse; Dr. Saunders’ successors, Dr. Nessa Bayer and Dr. Joseph Telch; Diane Doucette and Tyna Kasapakis and the legion of children and grown-ups who have befriended and helped Walker at Stewart Homes in Toronto; Minda Latowsky, Lisa Benrubi, Paul McCormack and DeLisle Youth Services; Alana Grossman and her teachers at Beverley Junior Public School in Toronto; Dr. Edmund Kelly at Mount Sinai Hospital, and Judith John at the Hospital for Sick Children in Toronto. I have been continuously grateful, as well, for the unerring counsel and steady encouragement of Dr. Bruce Barnes. I owe Jean-Louis Munn, of L’Arche Canada, a good French meal, as well.

  It took a long time to write this book because it has taken a long time to live it. The generosity of my colleagues at the Globe and Mail has been bracing, to say nothing of a godsend. Editor-in-chief Edward Greenspon and deputy editor Sylvia Stead granted me time away from my regular responsibilities at the newspaper. Carl Wilson edited an early version of some sections of this book, which became a series in the newspaper. Cathrin Bradbury, my longtime editor and friend, was the person who convinced me to write about Walker in the first place, and who later steered that writing into a book; her keen eye and alert editorial judgment have been Walker’s best advocate ever since. What Cathrin started, Anne Collins, my editor at Random House Canada, finished, with the able assistance of Allyson Latta, peerless copy-editor. Anne’s skill in helping me find this book’s through-line was surpassed only by her patience, which is so immense it warrants genetic analysis on its own.

  At the very edge of my composure, I must thank some dear friends, who not only kept us company through the darker moments of Walker’s struggles, but more importantly became his friends and made him part of their lives. Their kindness has become my definition of grace. Before Olga de Vera, Hayley’s and then Walker’s nanny, I am, quite frankly, speechless. My pal and colleague Colin MacKenzie and his wife Laurie Huggins were the reason we finally found lasting care for Walker. My brother, Timothy Brown, and his partner, Frank Rioux, befriended Walker literally from the moment he was born, without a blink of hesitation or qualm; took us on holidays, cooked us meals, gave me a place to write, loved the boy. Two couples—Allan Kling and Tecca Crosby, and John Barber and Cathrin Bradbury—have been the best friends Walker could have: they shared summer cottages, took him on weekends, became his and our favourite refuge, and never accepted a word of thanks. Their children—Daisy Kling, and Kelly and Mary Barber—were equally decent, and treated Walker like their (always) little brother. Don’t think I didn’t notice.

  Finally, I must do the impossible and describe my gratitude to my daughter, Hayley, and my wife, Johanna, Walker’s sister and mother—my steadies, my best advisers, my sweetest solace in those darkest nights, and Walker’s favourite companions. For good reason: their love knew no hesitation, no start and no finish.

  Toronto, Canada

  April 23, 2009

  permissions credits

  Grateful acknowledgement is made to the following for permission to reprint previously published material.

  “Anecdote of the Jar,” from The Collected Poems of Wallace Stevens by Wallace Stevens, copyright © 1954 by Wallace Stevens and renewed 1982 by Holly Stevens. Used by permission of Alfred A. Knopf, a division of Random House, Inc.

  “Summer 19
83” by Mary Jo Salter. Used by permission of the author.

  “Do Not Be Ashamed” by Wendell Berry, copyright © 1999 by Wendell Berry from The Selected Poems of Wendell Berry. Reprinted by permission of Counterpoint.

  Ian Brown is an author and a feature writer for the Globe and Mail whose work has won many National Magazine and National Newspaper awards. He was the host of CBC Radio’s Talking Books, and is the anchor of TVOntario’s two documentary series, Human Edge and The View from Here. His previous books include Freewheeling, which won the National Business Book Award, and Man Overboard. He lives in Toronto.

  Copyright © 2009 Ian Brown

  All rights reserved under International and Pan-American Copyright Conventions. No part of this book may be reproduced in any form or by any electronic or mechanical means, including information storage and retrieval systems, without permission in writing from the publisher, except by a reviewer, who may quote brief passages in a review. Published in 2009 by Random House Canada, a division of Random House of Canada Limited, Toronto. Distributed in Canada by Random House of Canada Limited.

  www.randomhouse.ca

  Random House Canada and colophon are trademarks.

  Some of the material in this book was first published, in different form, in The Globe and Mail. Permission to use that material is gratefully acknowledged.

  Library and Archives Canada Cataloguing in Publication

  Brown, Ian, 1954–

  The boy in the moon: a father’s search for his disabled son / Ian Brown.

  eISBN: 978-0-307-37567-4