by Maria Mutch
The diagnosis is both important and not. It is important in that he arrived signifying difference. His entrance was enough to generate a slow-motion tumult in the room, one that gathered speed when it became apparent that he couldn’t breathe. The doctor and nurses withdrew him like a magic trick, a flick of cloth and he was gone to the intensive care unit. But this wasn’t the only disappearing act: the doctor, one of three women who shared a practice, and who was the first to hold him, began, without my realizing it, to recede. We never saw her again—not once. But his diagnosis is also insignificant because it is only one of numerous that would follow, like beads on a string. He arrived and he was perfect.
Gabriel shrieks again now while I stand in his room. The shrieks are like cyclones, full of movement, and I’m engulfed by the vibrations. It’s amazing to me that his little brother, S, who is seven years old and whose room is at the opposite end of the hall, sleeps through this, always. I open one of Gabriel’s favourite storybooks, about a lost dog who eventually goes to live in Manhattan, and try to snag his attention, bring him down from the high pitch of his sounds. The dog charges through a park with a dog warden at his heels, while a little boy and girl pretend he belongs to them. Gabriel laughs, wild-eyed, but not at the book; it’s some interior vision that has him. The children bring the dog home and lather him in the tub, then introduce him to his cosmopolitan neighbourhood. In the last drawing, he’s curled on a cushion and seems to be in a deep sleep. Gabriel bounces, his light brown hair flapping against his forehead.
Speech and language are not the same thing, of course. When he’s not caught in this midnight vortex, he’s eloquent with gestures and facial expressions; he speaks in a language composed of his smiles, grimaces, foot stamps, a range of calls, coos, and guffaws, the way he stands or plops to the ground. He signals with his body. A thrust elbow, he has taught us, is no; a clicking kiss sound rewards us for something we did or said. His headshakes and nods are too similar to be sure of, so he has a small board with the words yes and no written on them, and he points to the one he means.
In the photo that hangs on the wall, Louis Armstrong is on stage, wearing a tux. He’s dangling in his left hand his trumpet and one of his white kerchiefs and shaking the hand of trombone player Trummy Young with the other. Armstrong’s face, in profile, is electric; he’s smiling enormously, and Young is grinning right back at him. You become aware, looking at them, of the silence where you stand and the din of the concert audience where they are. A few feet away from the photo is another image, an abstracted blue trumpet. Underneath it sits a stereo and an iPod loaded with jazz. Gabriel has a captain’s bed with drawers underneath, a blue quilt, and a shelf at the head of the bed that’s usually kept clear. His mattress has a waterproof barrier and a cushioned pad on top; fresh bed linens are stacked nearby. Before the captain’s bed, when he was a preschooler, he’d had a futon flat on the floor because we’d been afraid he’d tumble from a taller bed, even one with guardrails, and the futon had been dubbed his bachelor pad. His grandfather built a hope chest that sits against one wall. It has a secret compartment, but the compartment’s existence, its purpose, is hard to convey to someone who has no secrets and is all secret at the same time, and so it remains empty.
Elsewhere in his room, the indications of suspended time: two bins filled to the top with his small stuffed animals (his twirlies), the elephants and rabbits and bears with their paws and ears pinched into pointy twists; another bin filled with balls; a yellow bookshelf filled with picture books, many of them from his infancy; plain plastic shades on the windows coloured a retreating beige in the hope that he’ll leave them where they are; a closet full of the developmental toys—puzzles and foam blocks and toddler games—from which he has never progressed, and stacks of picture symbols, homemade storybooks, drawings from his schoolmates saying things like Gabe yur the best! with sketches in bright marker of saxophones and drums; the detritus of various physical, occupational, and nutritional therapies, and missives from the professionals that have come and gone and come again since his birth: pediatrician, pediatric dentist, neurologist, speech therapist, occupational therapist, pediatric ophthalmologist, physical therapist, developmental therapist, gastroenterologist, and psychiatrist.
In the rest of the house, the signatures of the cyclones that have spun out from him: the unbreakable plastic cups and plates and toddler utensils with fat handles, and here and there the patching jobs to cover the dents in the furniture and the black semicircles on the walls where he has swung picture frames when walking by; toys and books that are held together with tape like little Frankenstein’s monsters, and the dried speckles of juice, pudding, and yogurt explosions that have escaped the exhausted washcloth. Everywhere you look, the battered, rejoined scene, walls left with a blank stare, cabinet doors that lean from their hinges in a house that has gone elastic. Everywhere, the evidence of entropy and gravity and the provisional nature of the material world in the hands of a boy who doesn’t speak.
Before Gabriel, I believed that night is for forgetting in the morning, for a kind of indifference to reality or at least the outward appearance of it, and if we happen to catch a glimpse of night itself, it’s through the veil of electric lights. When Gabriel was three—and shortly before I became pregnant with his little brother—we moved from the outskirts of Toronto to a small town in Rhode Island, where we could see the stars, easily, but even with the astronomical readily available, there was still the sense that seeing and being aware of it for longer than the walk from the car to the door of the house is unusual. Humans can be a little estranged from night, stuffing the dark as we do with fears or streetlamps, and that estrangement included me. Until Gabriel began his Sisyphean rising, and rising.
When he was still a toddler, I took him to a playgroup, where a woman struck up a conversation. She asked me if I belonged to a Down syndrome society.
Except that she didn’t say, Down syndrome society. What she said was, leaning forward and tilting her head slightly, Do you belong to a secret society? And then she stopped, laughing with embarrassment, and corrected herself.
It’s okay, I said. It’s okay. I know what you mean.
But entrance to the society, and its knowledge, has a price. Night is composed of the things we aren’t meant to see or know, and evidence of my transgression turns up as crying jags, an inability to abide the simplest logic or remember the most fundamental details. Sleeplessness has been so persistent that I commit the lapses of a bland dementia: the coffee mug ends up in the fridge, the milk in the cupboard. I don’t see the time of a medical appointment despite it being marked in capitals on the calendar. One day a stoplight seems perfectly green in my reality and I slide through a startled intersection, just narrowly avoiding a tragedy. This is the hallmark of sleepless living, the almost unconscious flirting with potential disaster, the playing with charms that are really electrical wires or scissors. The amount of sleep I get is too short for adequate dreaming, and I stay close to the surface, where the sleep is delicate and prone to dissolving. During the day, my mind feels stuffed with cotton balls and briars, the brain itself rubbed with sandpaper. And yet, in spite of what feels like mental disintegration, I have moments of lucidity, when my visual cortex seems especially charged. In those moments, the symbolism of objects becomes available; the red apple on the counter, the horse’s black eye, the white curls on the ocean mean something. Colours break open in a deluge of prismatic code. Van Gogh wrote, Colours indeed have something to say for themselves. And if there was anyone who was acquainted with the night and the shattered mind, it was he.
The shattered mind also tends to dwell in isolation. In the night, I’m alone with Gabriel, cleaved from all the sleepers in the world, even the ones I love most. They turn to shadows and slip away. R and S. My isolation, however, doesn’t prevent an understanding: there are other initiates in the society. I know a man who was hired by exhausted parents to be the night nanny to an autistic boy who would rise from his bed and
pinch his sleeping sister; my friend’s job was to stand sentry at the bedroom door, guarding the sleep, or the waking, of the boy—guarding the night.
I wonder how many of us are in this darkness—and who would take the census, rapping on our shadowy doors, to count us like coins or diseases? I think the number is larger than some would guess, that we move about unnoticed or unknown or cloaked or secret. We are up, with the doctors and nurses and firefighters, because in the night the child’s abrasive response to the usual rhythms becomes an emergency. Or at least an emergence. We are up.
The other initiates can be hard to discern, but I look anyway. When Gabriel and I listen to his jazz albums, I know the musicians are speaking a night language, and it feels like an understanding is being traded back and forth; it feels like empathy.
I’ve looked in other places, too, for the initiates, and in January 2007, I ordered a book online. It was by Admiral Richard Byrd, the polar explorer and aviator. In 1934, while on his second expedition to Antarctica, he attempted to stay in a hut by himself for six months during the part of the polar year when the sun doesn’t rise. He made it through four, though nearly died doing so. The book is called Alone.
Even the title seemed commiserating. But Byrd wasn’t the first discovery in my search for solace. Initially, I was intrigued by explorers in cold places, either poles or mountains, and the idea of their aloneness, and not loneliness necessarily but singularity. The spaces were captivating, the sheets of ice and snow, and either a never-ending day or a never-ending night seemed both beautiful and difficult. There were ships and men locked in ice in the Arctic, and arcs and curtains being drawn in auroras of rippling colour. Or I was intrigued with climbers of Everest, for instance, the ones who don’t come back and are grafted by cold for eternity to the side of the mountain, made indelible in a hard rumple of clothes. Imagine the subsequent climbers who find the bodies, which are eerily seated, perhaps, as though waiting. So maybe the idea has to do with waiting, or with being found, or being found too late. The idea has to do with the attempt at exploring a difficult place and with whether or not there is rescue.
After the mountain climbers and Arctic explorers, my attention turned to the Antarctic, which seemed even more of a blank. An intriguing Nothingness, one correlative with the psychic regions where I’ve been stumbling. A place so abstract it came to us first as an idea, providing semantic balance to the North. There had to be a cold, icy South, asserted Parmenides, and then Aristotle. For a time, Ptolemy led everyone astray by insisting that the South was temperate and populated. But eventually it was found, the existential realm of ice, so potent in its ability to wait that its existence was surmised two thousand years before anyone would actually see it. Someone fantasized Antarctica, and it was true.
A supercontinent once existed that contained the bodies of what would become Antarctica, Australia, Africa, India, and South America, called Gondwana (and there is something about the naming of prehistoric—even theoretical—lands that seems uncanny). Over millions of years, Gondwana split apart. Eventually the piece that was Antarctica, dressed in plant and animal life, made a verdant parade through the oceans. It drifted south, turned away, and, like a boy without words, turned inward. It covered its lush land and its secrets with ice.
Eventually there were the explorers who tapped at the edges of the actual place, and the ones of the early twentieth century, such as Shackleton and Scott and Amundsen, who attempted to go farther in, even reach its centre, who were driven to insist on their presence in a place that rebuffed them. Some of them died, some of them didn’t. The Ice had a dual nature, being both menacing and meditative, composed at once of gigantic, stable plateaus and also changeable cores. The Antarctic is a conundrum, and I have known some of those.
Finally, there was Byrd, who left the suffocating confines of the men and dogs of his own expedition and went more than a hundred miles away. He took meteorological machines with him to assess the void, take its pulse. Really, though, it would seem he wanted to assess himself, explore the void right there at his centre. Either way, his story appealed to me, and it didn’t hurt that the book pictured on my computer screen featured his face, rimmed in fur, and he was handsome. So I clicked ADD TO CART. Days later the book arrived and I read Alone, and I read it again, and I continue to read it and thumb through it and write in its margins and flag the pages with yellow sticky notes and torture the spine, which has held up remarkably well. The sleepless mind is nothing if not obsessive, and so I open the book again and again until it no longer closes.
There is Byrd in his colossal night, the cold morning amplified by waking. For weeks, he watches the sun hover and stutter along the horizon until it fades entirely for the Antarctic winter, a process he speaks of casually, seemingly with little regret as he’s watched it go.
But then a small, slick pain. He writes, as one might watch a departing lover. Darkness comes, but so too the red spectacle of a vertical line of four stars, a blaze that turns silver, before he decides it’s likely one star refracted three times by ice crystals.
Night is never really blank.
For the first six weeks of his life, Gabriel was silent. His cry was only a grimace, and I remember holding him, being awed by him, and wanting badly to hear his voice, and that when it finally emerged, it was small and wavering. It seemed that the start of his language, and the reality of him in a way, was ushered in, like a Zen meditation with the sound of a gong, by this turning point: his cry.
His words gathered a few at a time, and by the age of a year, he had accumulated about twenty before they began to slip away, the typical ones like pop and up and bubble. The words now are ghosts, and I can’t hold them in my mind, the sounds of him speaking. I don’t remember his first one, and I have to wonder if the forgetting is intentional, as forgetting often is. First words are spectacles, and seismic. They stop a room. The baby promises a trajectory with that first word: one, and then many more, proof of cognition. Dada or cat or cookie synthesizes to a kind of developmental largesse. All is well, it has begun, you can relax now.
Eventually, I kept a journal for recording his words, and they appear, in black marker, arranged in rows, along with his signs. We had anticipated oral-motor difficulties, and so one of the therapists who made regular visits to our house taught me to sign. As Gabriel and I talked each day, I drew in the air, and he eventually imitated. While the sound of his words in my memory is thin, the image of him signing is clear, his hands languorous and purposeful at the same time, a sweep of meaning through the air. Ball and elephant and airplane. Giraffe and help and milk. His gestures were fluid and surprising, almost elegant, and his signing vocabulary grew to eighty words—more and mama and book—until meaning pulsed and flickered around us.
The signs, too, vanished. The disappearance was so exquisitely subtle, so already submerged in silence, that it was a long time before R and I realised what was happening. We were so delighted when he did communicate that it masked that he was turning inward, but in the journal, it became apparent that I was recording a decline. From age two to four, the words and signs, every single one, began to slip away. Clutching after them and writing them down did nothing to stop them. We were introduced to a new kind of space, and it wasn’t so much that silence was noticed and accounted for; the silence itself was beguiling and formed around us so gently that we could excuse it. Eventually, as the spaces grew larger and he did speak or sign, he could silence anyone around him. The words, when they swaggered in, became legendary.
One such instance occurred when he was three and a half, and he walked into the bathroom where R and I were getting ready for the day. He stood with his fingertips on the counter’s edge and, miming our peppery speech, said with perfect clarity, fuck. At age four, he sat at our kitchen table with an untouched bowl of fruit, and R asked him—not expecting an answer, just posing the question because you never know, maybe someday an answer would come—why he hadn’t eaten any of it, and he responded, It sucks. The stri
cken silence that followed must have lasted a full two minutes. The last times that he spoke, we were unaware that we wouldn’t hear words from him again. He was exact and said, Bye, at age six, and a year after that, All done.
There are therapies but no particular sorcery for the problem of disappearing words, no way to pull them back. From the moment he was born, it seemed, there was much to be done. I was given to think that his development relied on my ability, together with that of countless therapists in various fields, to promote it, and that we had to overcome the invisible forces afflicting him with repetitions and skillful convincing. It seemed to me that I was supposed to solve the problem.
The appearances and disappearances were accompanied by difference all around: he was almost two before he took his first steps. A physical therapy guru arrived from South America to give a workshop on his method, called MEDEK (translated into English, the acronym means Dynamic Method of Kinetic Stimulation), and those of us attending learned circuslike, improbable things. In a large room with a crowd of parents, the babies and toddlers were skillfully flipped and spun. He made the parents gasp by balancing the babies upright on outstretched hands, in just the way that a child learns to vertically balance a stick. We went home and turned our kitchens into therapy rooms, and under the tutelage of therapists practised this particular magic. And it was there that it happened, Gabriel the toddler, who had been unable previously to stand alone, balanced perfectly, cleanly, with his little feet on my palms; he grew, absurdly, from my open hands. Within weeks, he took his first steps.
