Know the Night (16 page)

As Gabriel grew, he seemed to become more entranced by his repetitions, the most notable, because the most onerous, being his shrieking, but he began to practise an entire language of obsessions and sameness, one that expresses his uneasiness with his body and all the world’s
things
. Throwing began, and the swinging of doors open and shut, and sometimes hitting himself in the head. It’s like watching someone with an impaired memory wake every day to a new world, one that he has to examine and repudiate all over again. Various sensory therapies followed, attempts to ease the exchanges between him
and everything else. When he was still small, we massaged his limbs and swept a soft brush over his body, a process called the Wilbarger Protocol, which is meant to alleviate sensory discomfort, and used vibrating toys on his hands for the same reason. We took him for cranio-sacral therapy, where a man gently massaged Gabriel’s skull, and hired a private occupational therapist to create an at-home program to help him acclimate to the routine tasks of daily living and their attendant objects: the use of a spoon, a cup, a toothbrush, a hairbrush. He seemed to enjoy the therapies, and providing them made R and I feel less helpless, but his repetitions and what seems like sensitivities in his hands have continued. The mysteries of language and communication have become knotted up with the presence of the body and objects within a space. Watching him repeatedly dismantle the contents of a drawer, for instance, makes me think that he isn’t only playing in the way a toddler does when emptying the kitchen cupboards but that something more philosophical is happening and he is working out the puzzle of the material world, the
thingness
of things. In some ways, it’s gratifying to see him sit on the floor beside a chest of drawers and pull T-shirts and pants into heaps around him because it does seem like playing, connected as it is to the development of typical babies. But he is far from being a baby now, and the relentless focus on his task reminds R and me that we are all a bit stuck. The clothes heap, like Sisyphus’ rock, suggests we are chained to a process of repacking drawers, to righting and repairing things.

Gabriel throws. He throws magazines, stuffed bears, plastic plates, pillows, storybooks, pens, toast, peanut butter sandwiches, puzzle pieces, playing cards, and lamps.

Also CDs, DVDs, DVD players, blankets, toothpaste tubes, hairbrushes, toy cars, Lego pieces, crayons, and picture symbols.

Shoes, socks, pants, turtlenecks, nail clippers, novels, and cheese cubes.

Pretzels, building blocks, French fries with ketchup, cups with juice, bagels with cream cheese.

Staplers, tree-shaped candleholders, comic books, atlases, high-heeled dancing shoes, prescription sunglasses.

Paper napkins, bowls of yogurt, bowls of popcorn, bowls of pudding, and bowls.

Buttons, butter knives, orange slices, apple pieces, paper clips, camera parts, and magnets.

And balls. He throws balls.

If you want to be with him, converse with him, live with him, you must be willing to be with the repetitions also. They’re something he’s trying to say. Which doesn’t mean that I’m always available to hear it. The repetitions are deafening, deadening, and simple. Sisyphus’ trek with his rock is not complicated; it’s precisely the simplicity and the anticipation of the next cycle that generates the mien dark enough to be mythological. When the repetitions come in their spare but unceasing waves, I experience something very much like self-pity. I read a few words in a book, and he taps his sentence strip on my shoulder or leans over me as I sit in a chair and a long drip of saliva falls from his mouth (which, because I’m his mother, and in spite of the frustration, I sometimes find eloquent). Or he stamps his foot or makes a sound, a whine or a moan, or he taps his yes/no sign. I fulfill his requests, read a few words more, try to centre myself in the spot I was, and hear the television
remote shatter on the living room floor or cutlery clatter and spin on the kitchen tile, or S’s books and drawings being swept from the table. The rest of us insist, regardless of knowing better, regardless of knowing his thoroughly entrenched repetitions, on continuing to place our books and drawings on the table, the TV remote out in the open in the living room. (And the TV remote has a story of its own; aside from being held together with tape, it has also lived for its own protection inside a plastic container; until Gabriel learned to open plastic containers, and we found him, giddy with triumph, sitting on the sofa with the remote.) We insist on flouting his rules because our habits are more like his than we care to admit, because repetition is comforting in some way, or it’s a way of insisting on having our way, and so we suffer a loop of our own.

I was chopping vegetables while he sat and ate his cheese cubes, a magazine on the tabletop beside him. Magazines are one of his tantalizers. Eventually the cheese was gone, but the magazine remained. I saw, as so many times before, how he reached for it, slowly and subtly, his fingertips finally touching down and the almost luxurious tugging on the paper. The magazine turned fluid as it spilled over the table edge and resolidified before it hit the tile.

I have wanted to open the repetitions, see the insides. His experiments are ones of extension: how to place the urges in his body into the atmosphere and see the consequence in the people around him. The variations are exquisitely minute, and endless. Thousands of incidents—pullings, tuggings, throwings—and an equal number of responses. R and I are practiced at the poker face, the slow breathing, the nonchalance, but if the repetitions show us anything it is how human we are, how fallible. There is always a time when
we react more than we intended, or when his faulty vision is suddenly so attuned that he detects the ripple of frustration, a sweat droplet on the brow. Examining the repetition does nothing; there is only more of the same.

When Gabriel was still a small baby, small enough that R and I believed that by receiving various nutritional and educational therapies, he would surpass the low expectations other people had of his development, long before he exhibited behaviours that moved him from one diagnosis into another, I went with a friend to visit an older couple and their grown son with Down syndrome. At the time, I thought I was coming to see the future, what Gabriel would in some way be like. D was in his early thirties and, dressed in a button-down shirt and khakis, went into the kitchen to make us coffee. He rode the transit system by himself and had a job. He griped about the people he worked with. He showed me his computer where he was entering word-for-word the pages of a book he liked. He stuttered severely, and at the time—unaware of just how accomplished he was—I thought it was somewhat tragic how much time and patience were required to hear him. The stuttering seemed like a barrier to the man who was so well developed and thoughtful, and I was inexperienced enough not to see that, in the grand scope of impairments, it was incidental.

His chief love was for musicals, and he went to see as many as possible, his favourite being
The Wizard of Oz
. He had an old hardcover edition of the book that he showed me while telling me about seeing the musical version at a nearby theatre. I asked him who was his favourite character, and he answered,
Oh, the Wizard
,
and described the scene where the Wizard is discovered to be just a man. He struggled over his words, but they were there—the very elusive creatures I would love to hear now from Gabriel—one halting sound at a time.
I feel like that sometimes
, he said.

I’m a very good man … I’m just not a very good wizard
.

I’m not a very good wizard either.

I have watched Gabriel’s favourite spot in the living room became more and more featureless as we’ve negotiated the territory with him and made our modifications. In some ways our freedoms have shrunk in accordance with his (though freedom is a relative concept; we likely can’t grasp either the degree to which his freedoms are lost, or the surprising ways that he might be freer than we are). Certain drawers are kept locked or emptied because of his raiding, and loose objects kept out of reach. Where the coffee table once stood, there’s now nothing. The walls are bare and the end tables, too. (It’s okay, I’ve discovered, for us to be bitter about the adaptations, and it’s also okay to note that the need for them has made us increasingly resourceful. Also less cluttered.) We don’t tend to collect things—the miniature or the fragile or the found—to bring home; no groups of shells or vases or figurines, though we do have shelves stuffed with books. In the arbitrary rules of his obsessions, there are certain things that are exempt from his notice, and the books fall into this category; so, too, Christmas trees.

In the absence of a ceiling light, there was, however, a lamp. Because of the room’s configuration, the lamp had to sit on a small table not far from the sofa, close to the spot where he curls up or stands and bounces. It was seductively large, made of gleaming metal with a pleated white shade, and he discovered that he could
crash it, breaking the bulb, or tip it slowly, so that it fell almost elegantly, gaining momentum before hitting the floor. Sometimes the light would stay on and draw taut his interest. He repeated the process with every righting of the lamp, which stayed more or less intact, though sometimes he ignored its presence for days at a time only to remember it and begin again.

Begin again. We didn’t understand. He was five years old when he started to shove the lamp, and he continued for two years. It was like finding a new hieroglyph and peering at it with a headlamp and held breath to try to figure out what the hell it meant. Because that was it: its meaning and how to get him to stop. We wondered what was the word for this, because it became apparent that there had to be one, that he had stepped with his repetitions from one circle into another. It seemed to us that he was so unlike anyone else we knew, even other children with developmental delays, that a moat had formed around us; we were, all of us, isolated.

The lamp found itself in an unbreakable loop of being repaired or righted and set back on the table for the next attack. That side of the room was too dark without it, and so there seemed to be nothing to do but answer Gabriel’s repetitions with our own. Perhaps, also, the sparse surroundings had gotten to us, and we wanted to insist on this one last thing: light. We wanted him to learn to live with it. For two years, psychology and science were applied to the question posed by his behaviour. Functional analyses were performed and combed over and modifications practised, as if this was the way to break his code, break him, and find meaning in the meaningless. I thought, witnessing his passionate persistence, that there had to be a reason.

I wondered afterward who was persisting more, the child or the adults?

Then one day I was standing in the doorway watching him, the puzzle I couldn’t solve. There was the warm, dim light of early evening, and I stood there watching him watching the lamp. He touched the tight pleats of the shade gently, stroking them as though they belonged to something living. He pulled his hand away, shifting from foot to foot, and reached out to the folds once more, the alternating light and shadow, and it happened again: the hardening of his expression, his hand making contact, the crashing lamp and darkness.

Darkness, except that I understood what I hadn’t before, that he was struggling. He had been trying, all that time, to stop himself from toppling the lamp. But it was a moon yanking a tide. There, in his skirmish with the lamp’s magnetic pull, he was entirely alone. Desire, unabashedly, won. I wanted him to stop being alone.

So I relinquished all the postulations and remediations and attempts to get him to stop, and did something simple: I bought a new lamp. It was virtually identical, except that it was the kind that bolts to the wall. So R got out his drill and carefully measured and, while Gabriel watched with interest, shifting from foot to foot, he installed it. And as simply as that, the lamp and Gabriel have lived peacefully since.