The Boy in the Moon

by Ian Brown

  twelve

  In my room before dinner, Walker was suddenly there. He often steps into my mind the way a long-unseen but suddenly remembered friend can, opening the door of my memory. I wondered what he was up to, thousands of miles across the sea.

  For his twelfth Christmas I bought him a Magic Ball—a “decorative light for tomorrow” that looked like a crystal ball and responded to touch and voice and music. You plugged it in and fingered the glass and tiny lightning bolts raced around the inside of the ball, thick and white and almost molten where your fingers were touching, mingling with pink and purple streaks that emanated out of the centre of the ball. I knew Walker would love it, and he did, once he lost interest in the red and green metal-scaled fish ornament he plucked off the Christmas tree and rolled in his hands for two days straight.

  When Hayley finally redirected his focus to the Magic Ball, he stayed glued to it for two hours. (I began to worry it might induce a seizure.) He plunged his hands straight down onto the ball, leaning over his arm gaiters. He didn’t move for five minutes at a time. He approached the zapping lights gravely, like a small Zeus trying to blow the earth below him apart with a single thickened beam.

  Johanna went the other way that Christmas, picking up an array of small gizmos: a ball filled with sparkling liquid; a round, multi-striped wooden snowman top he might one day twirl in his hands for several hours on end. Her last gift was the really weird one. It was made of felt, and was six inches long: an orange triangle with a green pompom at one end, and four blue-green stalks protruding from its base for legs. A sober, unsmiling but abstract face had been stitched onto a smaller green triangle, which in turn had been sewn onto the larger orange one. The entire contraption was ostensibly a massive key chain, and looked like a cross between a carrot, a comb and an alien.

  “What is it?” I said. She had plucked it out of its bag to show me as soon as she walked in the door.

  “I don’t know. I really have no idea. I said to the guy behind the counter, ‘I have no idea why I’m buying this,’ and he said, ‘Everyone says that.’ ‘Really,’ I said. ‘Have you been selling many of them?’ ‘All day long!’ he said.” She was so pleased with the thing.

  “It’s fetching, but totally weird.” I turned the thing over in my hand.

  “I think that’s why the people who made it thought people might buy it,” she said. Then her face took on a new look, an emptied moment of cognition, a look I knew well.

  “I guess I bought it because it reminded me of Walker. Fetching, but hard to figure out.”

  Dinner was the centrepiece of the day at La Semence. My French was beyond rusty, but in that house it didn’t matter: I was just one more semi-mute, often incapable of making myself understood.

  Everyone at La Semence took dinner seriously. There were flowers on the table. The assistants, being French, took the food seriously; the stews and soups and salads arrived at the table in attractive serving dishes, and were uniformly delicious. Wine was always served, even to the residents, if their medications permitted; there were often guests (like me), and they were welcomed and toasted. The meals always began with ceremony: we held hands and sang grace. That act alone, grasping one another’s fingers, was a prolonged moment of uneasiness—I felt awkward holding hands with someone I didn’t know, and absurd for feeling awkward. And the hands! Whether they were stiff, crabbed, dry, moist, boneless, deep in the palm or fat as scallops, they all hung on; there was no self-consciousness there. Each hand was a world unto itself.

  Gégé’s hand was tight: I had to force my right-hand fingers into his small left grip. Jean-Claude held his hand open and then laughed as he took mine, and held on, but there was the limpness of his grasp to contend with, as if he had forgotten that his hands were attached to his arms. I tried to be light-hearted about it. Sometimes he forgot to let go too.

  Once grace was finished, the assistants served bowls of green mush for those who couldn’t eat easily, their nightly dose of fibre and vitamins. The rest of us had firmer vegetables.

  Everyone wore pyjamas: Jean-Claude in stripes, and a striped terry-cloth dressing gown over them; Francine in her wheelchair in a pink housecoat; Gégé in blue jersey Dr. Dentons, a smaller striped bathrobe over his bent body, but never done up, the belt trailing him like a forgotten task; and of course Lorenzo, the speechless Italian train-lover, in a magnificent dressing gown with silk piping and frogging on the sleeves, a gift of breathtaking luxury for a man with a beggared mind, who stood still in the middle of the room, motionless, arms extended, waiting, expectant as always. But waiting for what? The unknowable thing. He was no different from any of us, I suppose. In this fashion the residents transformed life in the house into theatre. All you had to do, to appreciate the depth of the performance, was watch carefully, and think about what you saw.

  The conversation rotated around the table: when JeanClaude burped, which he did frequently, Garry Webb made a face and a joke, or at least a parallel noise. Jean-Claude seemed to appreciate this. Garry improvised in the moment, drawing on his training as an actor. At dessert—ice cream and chocolate sauce—Gégé ended up with a chocolate moustache. Garry immediately started in. “Ah, you have a moustache! Hello, sir. Are you—a crow? Are you Corneille?” (He meant Pierre Corneille, the seventeenth-century French playwright, who had a distinctive dark moustache and soul patch.) “Perhaps you are a Mexican bandit! Yes—Sancho! Draw!” Garry made his fingers into guns, and mimed shooting Gégé. By now the entire table was laughing, watching Gégé, the butt of the joke. He was gazing at Garry, his face unmoved. And then very quietly he began to make a noise that sounded like gas escaping in bursts from a balloon. He was laughing.

  The way Garry teased Gégé was no different from what any pair of able-minded pals would get up to if one of them burped or smeared his face with chocolate. Garry had a connection with Gégé: he tied his bib, fed him his medicine and his dinner, joked, always sat next to him, bathed him and helped him to bed. Some assistants worried that making gentle fun of the habits of the residents was incorrect, but the residents enjoyed it most of all. They liked being the object of attention and of fun: they had no illusions about the way they looked, about what they couldn’t do. “I give it everything I have,” Garry said.

  Jean-Claude, my dinner companion, was sixty-one. Sitting with him, I began to imagine this life for Walker after I was gone; I could imagine much worse ones. But the waiting list to get into L’Arche in Canada—where there were far fewer outposts than in France—was indeed twenty years long. I sketched a picture of Jean-Claude in my notebook; he saw me, so I showed it to him. He erupted in pleasure. It seemed I’d found a way into his trust and his company—into his world. It was easier to do this with the residents than I had imagined. There were no rules, no prescribed routes: you went with what was available, with the most human thing you could catch on to.*

  And this is the strangest thing: even in the three and half days I stayed at Trosly-Breuil, those broken men and women taught me things.

  An example. There was an artisanal bakery in the village, a boulangerie some five minutes walk from where I was staying. I set out two mornings in a row to buy a baguette and have a coffee but I chickened out before going in. It is hard to describe how much mental agony this small failure caused me. My French was inept, they would laugh at me: the entire prospect intimidated me. I realized I was afraid of everything: afraid to take a shower, for fear of waking everyone up; afraid to come down to breakfast. (By nine in the morning the house was alive with noise—long high moans, train hoots, ays and oohs and clapping.)

  But something about the unassuming nature of life in the foyer fixed that. My third morning at La Semence, I woke early and snatched a shower down the hall from my room. It was the first shower I’d had in three days—in a stall that took up a closet, the spray far from ideal—and it seemed like the height of luxury. I understood then how much a shower or a bath must mean to Jean-Claude and Gérard and Laurent and Gégé, and to Walke
r—a steady dose of pleasure, the sense, in their disorganized bodies, that for the moment they had a physical outline.

  After the shower I dressed and walked into the village, through a small construction site: L’Arche was building two new foyers, transforming old buildings into new residences. (The French government had recently recodified housing requirements for the handicapped, and the retrofit had already become a serious financial challenge.) It was early spring—there were buds the size of peewee footballs on the trees. An owl was hooting. The best routine, Garry had explained, was to buy something to eat at the boulangerie, and then take it next door to the hotel for un café. There was only one thing to remember. “When you go in, say ‘monsieurs, mesdames’—that way at least they won’t think you’re some completely rude tourist.” I sat in the square, working up my nerve. Some teenagers were hanging out at the bus stop next to me, smoking. How did I get so frightened of everything? To take a shower, to buy bread in French, to step into a tiny country hotel—afraid to be. Retarded, incapable of language, afraid of what others would think.

  Walker never worries about any of that.

  I stepped into the boulangerie. One of L’Arche’s residents was there already, a young thin girl with a high, stalling voice, a stammer—as if her body would never be quite ready for her mind. She, however, managed to buy breakfast for her entire house. I leapt into the fray. Thanks to my French, I ended by buying twice as much bread as I could ever eat—the woman thought I wanted two baguettes, and I didn’t know how to dissuade her. But at least I had breakfast. I moved with my armful of bread down the street to the hotel. “Bonjours, mesdames, messieurs,” I sang as I crossed the threshold. Two large French gentlemen in leather jackets sat at the bar. They looked at me as if I were a visiting madman.

  But now it was done, and it was nothing.

  I understand how insubstantial this seems, how minor: man buys a coffee in French! But it was Gégé and JeanClaude, and my own Walker, who reminded me how to do that simplest thing. They reminded me not to be ashamed. That is never a small accomplishment. The essayist Wendell Berry even thought to write a poem about it:

  You will be walking some night

  in the comfortable dark of your yard

  and suddenly a great light will shine

  round about you, and behind you

  will be a wall you never saw before.

  It will be clear to you suddenly

  that you were about to escape,

  and that you are guilty: you misread

  the complex instructions, you are not

  a member, you lost your card

  or never had one. And you will know

  that they have been there all along,

  their eyes on your letters and books,

  their hands in your pockets,

  their ears wired to your bed.

  Though you have done nothing shameful,

  they will want you to be ashamed.

  They will want you to kneel and weep

  and say you should have been like them.

  And once you say you are ashamed,

  reading the page they hold out to you,

  then such light as you have made

  in your history will leave you.

  They will no longer need to pursue you.

  You will pursue them, begging forgiveness.

  They will not forgive you.

  There is no power against them.

  It is only candor that is aloof from them,

  only an inward clarity, unashamed,

  that they cannot reach. Be ready.

  When their light has picked you out

  and their questions are asked, say to them:

  “I am not ashamed.” A sure horizon

  will come around you. The heron will begin his evening flightfrom the hilltop.

  At eighty, Vanier was preparing for the end of his life. He was wary of public honours and awards, and didn’t want to be cast as an expert. “I don’t want to be more of an authority than I already am,” he said to me the next morning. “I want to be less of one.” He didn’t want to be bitter, the way so many old people were, “upset at the grief of not having power.” People keep thinking they are supposed to behave one way or another, think one thing or another, believe in one God or another, but “you don’t have to do anything. You have to cross out ‘have to.’ Just be. And let it come. What is to come will come. The greatest fear of human beings is the fear of power, and the fear of failure, and the fear of guilt. That we are guilty. What of? Disobeying the law. But what law? We don’t know.”

  “Oh,” I said. “So the guilt is unavoidable.”

  “Yes. That’s the problem. There’s a really interesting text in Genesis, which is one of the oldest books we have about the beginnings of humanity. At one point Adam and Eve separate from God. And God runs after them. He says, ‘Where are you, it’s me, God. Where are you?’ He doesn’t say, ‘You’re no good.’ He just says, ‘Where are you?’

  “And Adam responds, ‘I was frightened because I was naked. And so I hid.’ So: fear, nakedness and hiding. What is that nakedness? It’s our mortality. Whether we like it or not, we are not in control. And so, the whole reality for human beings is to accept oneself as one is.”

  “Walker,” I said, suddenly, “he can’t speak. And I have a language with him where I connect with him by clicking. And he recognizes it, and sometimes responds.” I did a little imitation of our clicking.

  “He’s clicking, and you’re clicking, and I call that communion,” Vanier said. “You’re vulnerable to him, he’s vulnerable to you. You’re not doing something for him. You’re just with him. Clicking. I like that expression. So when you’re with Walker and you’re clicking, you’re grateful for one another. You can imagine how grateful he is, because this is Dad, looking at him. And you’re grateful, because he’s looking at you, at the child within you. Not looking at you as somebody who’s written the best something or other. He’s looking at you as you really are in the depths of your being.”

  I’m not suggesting this is the only way to understand a profoundly disabled boy. But Vanier said these things. Sometimes they made sense to me, and sometimes they seemed the exclusive thoughts of a man with a deep religious faith I did not share.

  I took comfort in what Vanier said about Walker’s value, and yet the effort of believing it was sometimes exhausting.

  Later that day, the day of my bakery breakthrough, I came upon Francine, taking the sun in her wheelchair. She was parked on the path that led from La Semence out to the road; Lydie, the pretty assistant from the south of France, was fifteen feet away, raking the garden. “Comment ça va?” I said to Francine, and touched her shoulder. I was already moving away when she grabbed my hand, and then my arm. She was powerful; she pulled my face close to hers. She was spastic, palsied, but her mouth was open, making growling noises that got louder and louder. Her mouth was near my ear, her teeth a derangement of spaces: I thought she was going to bite me. I didn’t know what to do, so I hugged her, gave her a kiss. I looked up, and Lydie was watching us. “I’m sorry,” I said in my bad French. “I think I upset her.”

  “No, it is good,” Lydie said. “She likes men.” Then she turned back to raking the leaves.

  By the time Walker was two, I seldom thought about him without also thinking about death—mine, mostly, but sometimes his. At night after he fell asleep, if he fell asleep, or in the middle of the night if I woke and he did not, I saw the years stretched out ahead of us, unchanging. I wondered if I would have an opportunity to do anything but care for him; wondered whether caring for Walker eventually would erode and erase my affection for my wife. I imagined where all my worry went, what abscesses and cankers it was breeding.

  But mostly I worried about dying: about going too soon, before I had a chance to arrange the future, and what would happen to him afterwards. I wondered if it might be a relief if he died, and whether it might be a relief if I did too. Money was a constant worry, a canyon
. Because I didn’t want Johanna to be stuck with the double burden of looking after Walker alone and making the family’s income by herself in the event of my predeceasing her (as my bank manager put it), I bought mortgage insurance. That was $500 a month. Olga’s salary and Walker’s formula sucked away more than $40,000 a year. (For many years Walker’s formula bill was $800 a month, four times the cost of regular infant formula, and not covered by my benefits at work—food, after all, is not a deduction. I spent another $800 a month on groceries for the rest of the family, and we ate well for that; Walker’s had to be some fantastic formula! These days it’s $1,200 a month because it is, according to the manufacturer’s description, “pre-digested” for children who suffer from reflux.) Prescription costs, medical devices, even the toll for parking at the Hospital for Sick Children (at least $9 every time we were there)—it all added to the usual wear and tear that a family puts on a health plan. It was always interesting to see when our benefits would top out: mid-August? Or would we make it to September this year? Three years after he moved into the home, I’m still paying off Walker-related debts.

  On especially difficult nights, or if it rained hard, or most of all after the terrible arguments my wife and I sometimes had, strained by sleeplessness and ashamed of our failure with this strange boy, I asked myself if it might not be braver to take my life, and to take Walker with me. Suicide is not my default setting. But the hopelessness of life ahead, caring for Walker, could raise the spectre in me. There was chloral hydrate; there were pills. There was the car, there were places to drive the car off of, there were lakes to walk into.

  One of my secret death fantasies was to pack Walker into a baby backpack I owned, a kind of Snugli, and take him high up into the mountains of western Canada in the winter, one of my favourite places on earth, and lie down in a snowbank, and end it there, quietly, hypothermically. I imagined the venture in complete detail, how I would pick a moment when Johanna was at a movie and Hayley was at school, how I would get him out of the house and to the airport, with all his gear and all the ski equipment. Unfortunately that alone derailed my death fantasy: if I could get through that fucking nightmare, the airport with Walker and skis, I could survive anything, and there was no need to kill myself. It wasn’t quite what Nietzsche meant when he wrote that the thought of suicide has saved many a life, but it would do.