by Ian Brown
I am in a Bad Mood. I have been in a Bad Mood since I got here. Walker keeps reminding me that life does not have a theme.
Except at Disneyworld, where if you’re going to do something, you have to do it within a theme, and preferably on a scooter. No wonder Hayley said to me this morning, “Mickey’s real, Dad.” And you’re not, Dad, she might have added. No one uses money: our expenses are simply deducted from our life total on the Disney card, which of course can be used everywhere, because everything is owned by Disney. There’s a water park called Blizzard Mountain, the conceit of which is that a giant glacier is melting in the middle of Florida, but instead of skiing down runs, you slide down slides in your bathing suit. And that’s the best of the theme parks. Today we are doing Epcot, yesterday was the water park and the Magic Kingdom for the Christmas party, tomorrow, who knows, maybe the Kingdom of Surgical Brain Replacement. This is what is making me grouchy: there is no room for any deviance, for any divergence from the norm, from the package, from the oneness of Mousedom. You are not an individual here, you are a member of the extended and mechanized Mouse Family. Walker too. I guess you could call that a form of inclusion. But that’s the problem with an official policy of inclusion: you can never be who you really are. I suspect I feel in Disneyworld the way Walker feels in the real world: it has its charms, but mostly we don’t quite fit.
The all-inclusive version of life comes with an all-inclusive morality too. On the flight here I sat next to a woman of sixty-two. She was flying for the first time in her life. True. And the first time she boards a plane, she flies to Disneyworld! She had the flat, platter-like accent of upstate New York. “My son,” she said as I tried to read my book, “he really believes in family. The other night, I said to him and my daughter-in-law that I’d take the kids one night and they could go to dinner. And he said, ‘No, this is the kids’ holiday.’ And my daughter-in-law, she goes, ‘Well, it’s my holiday too.’ And my son, he said, ‘No, honey, our holiday will come when the kids are grown up.’” I wanted to find her son on the plane and say, “Here, take Hell Boy for a few hours, see how willing you are then to sacrifice your life and your wife’s.” He is the sort of asshole that makes me feel like a failure as a father, because sometimes the only thing that gets me through a day or a night with Walker is the possibility that I might be able to spend a few hours away from him, to read or go for a bike ride or cook something that doesn’t have Pablum dust as the main ingredient. Last night after he dropped off I moved into the living room of our suite to read, but all I could do was listen for peeps and shifts and other signs that Walker was waking up. I don’t have the sixty-two-year-old woman’s son’s selflessness, and I certainly don’t have his single-mindedness. The world rebukes me for my inability to accept Walker’s fate, and thus my own; rebukes me for my vanity and laziness.
And yet Walker is also the antidote to this self-recrimination. It happened again today, walking through Disneyworld’s Plaza of the Nations or the Congress of the Universe, whatever the hell it was—a flat, mysterious acreage studded with a forest of flagpoles of many nations. Walker was freaking out, screaming and bashing his ears (he’s not a big fan of Florida’s humidifier weather) and I was talking to him, muttering my steady chant to see if I could distract him, pushing the stroller with my hips while I held his hands above his head, to keep him from smashing. I’d been with him for three hours straight, after he woke up early and I took him for a walk outside so Johanna could sleep (Hayley is sleeping with her aunt, Anne, in the next room). I was near the end of my tether. His screaming had been non-stop for an hour, and under the relentless steamy Florida sun had expanded in my head to the point where the human agony it represented, the displacement and existential isolation it represented, were the only things I could hear or think about or even see: the white band of his noise became a strain of aural glaucoma, closing down all my other senses. I thought, “You know, my boy, there are times when I hate you”—which is not the attitude of the son of the first-time flier, but it was at least momentarily true, and Walker forced me, even allowed me, to admit it. He is the antidote to false consciousness. He will always remind me of where we truly are.
And somehow—maybe because of the fierce light of his dogged-ness, or because we had survived another meltdown, another encounter with chaos—a force field of resilience formed around us, and gradually, with hiccupping tears and gulping breaths and finally sighs, he stopped crying, and sat back, and rode with me, with no strength left to do anything except take in the details of the passing world.
A white bungalow on the edge of the city is where my son lives now.
When I’m not there, I can see it in my mind. I think about it all the time since he moved, three years ago now.
A white ranch-style bungalow. Wider than it is long. Ramp to the door. Always at least two cars in the driveway. Sandbox and outdoor toys in the back. Strip mall on the corner, community centre on the other side of the intersection. Names of the kids painted on the glass of the patio door. Charts and medical histories in the kitchen. No carpets (they foul up the wheelchairs and walkers). A busy house.
It’s first-rate as assisted-living homes go: well organized, well staffed (the twenty-four-hour care Walker needs, even asleep), stable. Clean—clean is important. He lives there with seven other handicapped children.
I know his bedroom by heart: blue-green walls, needs another window. But neat. Blond wood chest of drawers. Stickers of soccer balls on the walls. NASCAR bedspreads! Three of them share the room: Marcus (deaf, delayed, anxious, but lively); Yosuf (tall, skinny, delayed, decomposing skeletal strength, sweet and quiet—he always shakes my hand); Walker, the most intellectually delayed of the three.
Picture of Hayley on the wall. Picture of Olga. Picture of his ma. Picture of me.
The closet, military in its order. Bins, labelled: shirts, pants, underpants, spare arm tubes. A picture of a snowman and a pair of boxing gloves, traced out of purple paper. A boy who boxes his own ears, turned into a picture. He has always been that. A boxer, a tough guy: he may be tiny, but he is rugged, and has a bottomless capacity for pain. At his baby shower—held after he was born, because he arrived five weeks prematurely—a friend gave us a George Stubbs print of a famous small bulldog, Billy Martin: a fighting dog. How apt some gifts turn out to be.
I drove out there the other afternoon after school to fetch him home for a few days. (Did I tell you? He lives there now.) I go out often enough that I can recreate every foot of the route in my head. I tend to speed on the drive to get him; when I’m taking him back I am not so eager. Even after three years, the departures (kiss him goodbye more than once and give him a squeeze and kiss him a final time and then step quickly outside and pull the automatically locking front door of the house shut behind me and walk down the wheelchair ramp to the car) are like small deaths, as if the sun is slowly dimming. As if something wicked and deeply unnatural is occurring.
Today I arrived before Walker was back from school. I waited in the kitchen. The house was completely silent and overcast. Seven people in the living room, the residents of the house—Jasmine, Colin, Yosuf, Tharsika, Cindy and Karen, with Marcus (who reads lips) watching TV with the volume off—but not a sound to be heard. Of course not: none of them can speak. They were lost in their helmets and wheelchairs and their private minds. Scrabbling at the air with their hands. Jumping over and over again, face to the wall. It could have been performance art. Their lonely anxious agony.
Then I heard Walker’s short yellow bus pull up in front of the driveway. I ran out to meet him. “Hello, Beagle!” I said. To my surprise, he jumped into my arms. For all the times I’ve picked him up here since he moved out, I’m never sure he’ll remember me. He always does, but I’m never certain.
I gave him a hell of a squeeze back.
And then, while we gathered his pump and his formula and his meds and his snowpants and his camouflage backpack and his arm cans and his foam helmet (I forgot the stroller), he wandere
d into the living room.
None of the others said hello, but then, neither could he. He went straight to the Christmas tree instead, in his deliberate way, to examine its ornaments. In that house of eternal silence, he alone was drawn to brightness. I haven’t been able to forget that.
We left quickly. He loves the snow, the outdoors, the fresh air on his ears and his head. Everything he likes is so important to me. They feel like accomplishments.
When Hayley turned fourteen, I began to take her to the ballet. She has been a dancer herself since she was three and it’s my favourite evening out: I wear a bow tie and she wears a dress, and she tells me which moves are difficult and which are not, and we discuss what a dance means, how the movement of the body can make the mind feel things. On those evenings with my graceful daughter, in our seats near the stage, I am grateful that my life has been touched by good fortune and grace.
One night we went to see the National Ballet of Canada performing Glass Pieces, originally choreographed by Jerome Robbins to the chanting instrumental music of Philip Glass. Row after row of evenly spaced dancers paced across the stage in identical time to Mr. Glass’s rhythmic score. Occasionally a couple broke step to perform a pas de deux, only to be instantly reabsorbed into the rank and file.
A ballet about the life of a great city, in other words, with its armies of people doing the same things in the same impersonal place to the same rhythms, save when they break away from the pack and just as quickly conform and return to position, as we all must. A work of art that lets you see the crisp shape of your own existence, even while you are immersed in your repetitive, blinkered life. A generous, hopeful gesture, a gift of perspective. It brought thick tears to my eyes.
Walker makes people cry too. It can happen any time and eventually does to almost everyone who meets him. But they aren’t tears of loss or pity. I have come to the conclusion that most of the time they’re tears of gratitude.
The disabled, especially the severely disabled and the intellectually challenged, remind us how dark a life can get—every life, not just the handicapped ones. Born out of darkness to head immediately toward another darkness with only a blink of light between: that was Samuel Beckett’s description of the human ride, after all. Most of Beckett’s characters are legless, or confined, or without reason for hope—disabled.
So when Walker does anything to suggest there’s a point to his life besides pain and isolation, it seems particularly brave. For a boy like Walker, an ornament on a Christmas tree could be the Ark of the Covenant: it glitters and snatches his attention, and the shred of care and detail and imagination that went into its making is refracted from its designer to me, or anyone else who can take the time to look at it, through Walker. If I pay attention long enough and sit still long enough to think about it, if I am daring enough not to scurry along to a more “productive” or distracting activity, the idea of hanging a trinket on a tree, a memory on a branch, an ancient pagan ritual, rises into fresh view again. Walker is a lens—one with an unusual shape, I admit—through which to see the world more sharply. Walker makes me see the ornament for what it is—better still, for what it could be, what it might be. Look here, Pa, he says, see what you missed. All you have to do is slow down. Let me show you how.
If my son is trying not to succumb to pain and suddenly finds it bigger than him and is stricken with grief at his defeat and a deeper, graver wave of crying erupts from within him—that too makes me cry. Why? Because it’s painful to watch? No: his pain makes me angry. What makes me weep, I suspect, is the hidden optimism in even that crisis: at least he had hopes of beating that pain, was expecting that it might pass. A pal from Winnipeg put it well the other day, apropos of something else: at the end of the day, there’s always a cup of grog for the undefeated.
I think that’s what my steady weeping is about. Walker has the same effect as the ballet: they both can reveal the larger shape of the world. He is one of the pools where hope resides.
So to anyone who wonders about the potential value of a severely disabled child, and the possible meaning of a penumbral life passed mostly in pain, that’s one possibility. What if Walker’s life is a work of art in progress—possibly a collective work of art? Would that persuade you to take care of him for me?
I think about him for the first time each day before breakfast, at quarter to seven in the morning as I make my daughter’s lunch for school and come upon his feeding paraphernalia in the back cupboard in the kitchen, or when I notice the still-mangled louvres in the blinds on the front door as I get the paper. There are the photographs of him on the fridge and on the cereal cupboard, and on my bureau as I get dressed; there are the magnets he’s obsessed with on the fridge. His empty bedroom calls out from the top of the stairs. Every time he comes to mind I remember that we couldn’t keep on with him, and my hands and chest go cold; think of how long it has been since I saw him last and when I will see him next; remind myself of what I have to do the next time (doctor? insurance? tests?); calculate the number of days he has been away, feel okay or reprobate about the number; think about the shape of his head; think about his eyes, if he might talk; calculate when in my week I will have time to drive out to get him, and what time of day the traffic will be least onerous; think about arranging Olga; think about Hayley, alone with him in the world. That’s more or less every time I think about him. For a boy of so little purpose, he makes me think a lot.
But after Walker moves into his new home, I gradually forget the rhythms of his sleep. It makes me weep to say so: how did I let him down that much? And what will raise him up again? I forget about the way he insists on thumping his head, the wall, my head with his head, until he comes home for a visit and reminds me all over again. I forget how gradually and inexorably he wakes up, ever so slowly torturing whoever is lying with him with the prospect of his impending consciousness, repeating the same bonking of his head or the same scraping of his hand (hard, against something harder), the same murmur or moan, until finally he breaks through, often unhappily, into wakefulness. I forget how steadily he can hit the wall, four and five times a minute, for twenty minutes, without opening his eyes, and how quickly I leap into action, to keep him under, asleep. I forget how calm he can look nevertheless in the course of his surfacings, the seamlessness of his eyelids, the smoothness of his brow, how handsome and deeply calm even my small bent boy can look. How convincing his fake calm can be. I forget how infuriating he can be, when he resists my will. Last summer, at our friends’ remote lakeside cottage, he stayed awake until quarter to three in the morning. I first tried to put him down at quarter to eleven, when Johanna said, “You need to take him off Olga’s hands, she’s had a long day.”
I pushed the usual wave of resentment back into my chest. I removed his helmet, lifted the dead weight of him into the bed, collapsed beside him. I sang my store of songs to him—the only songs to which I can actually remember the words, “Amazing Grace” (four verses, one made up), “Amore,” “Are You Lonesome Tonight?,” “Old Man River,” plus a repeat of “Amazing Grace,” this time to the tune of “The House of the Rising Sun,” the way the Blind Boys of Alabama sing it. I did all that twice. That didn’t work. I cajoled him, clicked, joked, laughed, held him down, whispered in his ear, rubbed his head, his back. I did everything I had ever invented before. In reply he attempted repeatedly, by which I mean three dozen times, and with pathological enthusiasm, to conk my head with his head, as hard as he could. He enjoyed a 40 percent success rate.
Finally, after four hours, getting up twice in the process to listen to the night and patrol the now-deserted screened-in porch with him, after a particularly mean-seeming crack to my nose, I gave him a medium-light smack on the backside, and swore at him. “All right, you little bastard, that’s quite enough of that!” is what I growled. I knew I was in the danger zone where, as the advice books say, one must step away. I thought briefly about waking up one of the others, Johanna or my host, and begging for help. (Never Olga: she worke
d hard enough during the day, the nights were ours to solve.) I didn’t, of course, wake anyone. I hardly ever do. But the option was there. I had somewhere to turn. Alone, with no one to fall back on—I don’t think about that alternative.
Instead, I gave him the whack and told him to behave himself. Whereupon he turned on his side, leaned up on his elbow, looked into my face as if he were Milton Berle, emitted a loud, cackling “HA!” and rolled over and went to sleep. He just wanted to show me that now he can outlast me, that he’s up to whatever I can throw at him. I don’t know how other, normal twelve-year-old boys reveal that moment to their fathers, but that is how Walker told me. He used what he had.
But how do you know that is what he is trying to tell you?, someone might ask. How do you know you aren’t imagining all these messages between you? If he can’t talk how do you know you aren’t making this up? The answer is, I don’t. But the average father doesn’t know a lot of the time if he and his sons aren’t making up their bond either. The frame of any human relationship exists behind a veil of words, and sometimes sounds like something other than it is. Only a fool, or someone intent on disappointment, pretends otherwise. Walker and I don’t compound our confusion with words. We prefer noises.