by Maria Mutch
And yet. Words have been impervious to inducements and have developed the slipperiness of what is most desired. It took years for us to understand that our entreaties would do nothing to bring his words back.
I was walking through a building one day recently when I saw a sign admonishing people to be quiet. In fact, there were two copies of the sign, just in case the first went unnoticed: Be Quiet Because Sounds Carry. And the phrasing struck me suddenly, the suggestion that the sounds aren’t passive, but themselves do the carrying, like passengers hauling suitcases toward a train or rescuers laden with limp bodies from rubble. Even as sounds fly off in a rush, they’re burdened.
I’ve come to view the seizures as thieves of Gabriel’s abilities. He was five months old when he started having them, what looked like involuntarily gestures, so apparently delicate that he had them in full view for a week without anyone understanding what they were. One after another, the seizures began in his brain and rippled out to his fingertips, so that he simply lifted his arms up to the ceiling, as many babies do to say they want to be picked up. However, in Gabriel, the gesture came with a vague look of surprise. The propulsive nature of the movement was concealed by his low muscle tone, which is characteristic of Down syndrome, and made the motion seem almost casual. He gestured this way again and again, and I tilted my head at him, What am I seeing? The appearance, vaguely, of a marionette. Finally, when he was lying on my chest and began to gesture, I felt something like its trajectory, a burst of electricity. He was a semaphore, signaling. The ripple that began in him surged into me, cued cold panic and a call to the pediatrician.
A few days later, R and I found ourselves holding Gabriel in a lab where he was being prepared for an EEG. We’d kept him awake for much of the night so the testing could be done without sedation. R and I paced the beige room, rocking the baby, waiting for him to drift into a deep sleep so that electrodes could be attached to his scalp. By the time the technician finished placing them, a wire sheath snaked up and back from his head into a quietly whirring machine, one that would transmit data to a windowed room a few feet away. R and I hovered, waiting for the process to begin, the machines to hum and the pens to scratch. Someone in the other room watched the scribbles forming on the moving sheet of paper, seizures in cursive, which generated a murmur from the staff. When the test was finished, and we glimpsed the graphs, we saw the sketch of the electrical storm in his brain, a series of spikes and dips, a kind of organized frenzy.
By the time his seizures began, we had had five months to soak in all the information about Down syndrome we could find. Books and articles had piled up at the bedside and in the living room (and these were something like travel brochures and owner’s manuals combined) and I had immersed myself in them. There was a long list of possible physical traits associated with trisomy 21: epicanthal folds around the eyes, thyroid issues, neck-vertebrae instability, heart defects, and on, but not a particularly increased risk of seizure. The seizures seemed to have an etiology all their own, to have arrived from nowhere, or said another way, to have arrived from somewhere else. They were evidence of yet another planet in the system. I remember a terrible chill; I remember standing in the kitchen and my knees buckling. There were no words, it seemed, to hold on to.
The neurologist’s office was a building just yards from his house. It was easy to imagine him putting on his bowtie and jacket, and drinking a cup of coffee while looking out the kitchen window toward his office, then heading out across the lawn, in the slant rain, or snow, or past impatiens in early spring, to where he delivered the news to anxious parents, tried to explain the mostly impenetrable human brain and just what, exactly, they’d been able to understand. We sat in the waiting room, surrounded by thirty-year-old décor: vinyl seating with paisley designs in green and blue, wood paneling, a pale orange shag rug, all of it impeccably ordered and dustless. When we were led into the neurologist’s office by the receptionist, who was also his wife, we found him tall and white-haired with thick black spectacles. He gave the impression of having seen it all, and that was what we’d wanted to find, if not the doctor ensconced in the 1970s, then at least someone white-haired and wise.
He had reviewed the results from the lab and concluded that Gabriel’s seizures were infantile spasms, and as he explained them to us, it seemed that the term “infantile” suggested an ephemerality, containment. He told us, as we sat on straight vinyl chairs with metal arms, that when the disorder went undetected and so untreated for an extended period of months, the prognosis was not as good as when the discovery was more expedient, as in Gabriel’s case. There was also an increased risk, later on, of autism. We would have to wait and see. He was cheerful and sanguine, and somehow it worked, this silk thread of optimism, and we held it carefully, respectfully, not wanting to fray, or worse, break it. It was a gift and gave us time. When we realised that the extent of damage from the seizures was actually profound and there was, in fact, an autism diagnosis, a number of years had passed. And there it was. The drift of words, a shift, an alteration.
provisions
Inside of this is parenting’s alchemical gist: the love for the child becomes so enormous that it mitigates everything else; what would seem anathema to others becomes—to the parent, at least—more or less the status quo. I remember being tired and prickly with self-doubt but also utterly enamored. I remember the trembling, the worry as I held him, but also that life proceeded, that we learned to adapt. Some of the worries faded and so did the seizures once he was given a medication to quell them. I remember that R and I were content, that we found the workings of Gabriel’s brain and child development in general fascinating, and I became close with a group of women (wild and strong and visionary) with children with Down syndrome, who put another pulse of energy in my existence. I was consumed, mostly willingly, by the minute details of Gabriel’s progress and what the various therapists who had entered our lives were doing with him. The days were a rotation of people—ones with degrees and skills and experience—coming and going, and I was still unaware that words would come and go, too. Eventually, and at least for a period of months, the pervading sense was one of quiet power, of accomplishment. He was a magnetic baby with a toothless smile that was fleeting but so potent that everyone around him pandered to his humour to get him to grin. He was charismatic and a traffic stopper. A friend admiring his tufted blond hair likened him to a baby duck. He smelled fantastic. He learned to sit unsupported, and eventually to crawl, and to bring a spoon to his mouth. His sleep was deep and restorative and entirely reliable; so reliable that R and I often commented on how lucky we were that he was a champion sleeper, how we could recover from each day. We even said about his sleeping, Imagine if he didn’t. Imagine if we were up at night.
No, stop.
This is the cart before the horse; there was something else. A sound. Another transmission coming through. We anticipated words; we had no reason not to. But after his seizures and before his words (or: after the first silence and before the second), his original quiet was answered by another chasm when he bawled for long periods. The crying didn’t seem so different from many typical babies’ except that he was older and able to sustain his tight rage for hours. The pediatrician shrugged and mused that it was probably late colic; mused because there didn’t seem to be an alternative, another way of saying bald-faced-human-fury-encapsulated-in-an-infant. No other way of saying, at the time at least, the fury that is sometimes autism, a clash of gods delivered in a small body. At this point, it was years before the term autism would be applied to Gabriel, because he was still a baby, because his Down syndrome presented an obscuring feint, and because in the year he was born, autism diagnoses were still rarer than Down syndrome. With so many cloaks, he was simply a baby who cried a great deal.
There was a day in the midst of this, one of weeping and pacing and coming undone. He had cried for hours, his body a tight extension of my own, as though he were a raging violin. I had tried ways of carrying him, or I
had laid him down. I bundled him or gave him space. I tried to distract either one of us with food or juice, music or toys. I sang, talked, or fell silent. Dimmed the lights or parted the curtains. Provided fresh air or warm blankets. Or nothing, nothing, just an inward attempt, a prayer, for respite. So the seizures were long gone, but in their place came this scorching sound. A siren that the family cat couldn’t, for whatever reason, flee. He was drawn, in spite of himself, toward the sound and the baby. When I placed Gabriel on the sofa, still wailing, the cat, who couldn’t successfully hunt a spider, made a lunge at his small, smooth head and left behind some scratches and the impression of a tooth.
So maybe we should have known that something else was afoot, that our trajectory had always been headed in a slightly different direction. But not long after this, the fits of crying subsided. And so: the seizures were gone, and the late colic was gone, and in their place came Gabriel’s first words. He began, unmistakably, to talk. The magic was there, the silvery presence of words, fast as fish. And it was impossible not to be beguiled.
The Ice
Under the circle of light from my bedside lamp, I take up Byrd’s book:
The silence of this place is as real and solid as sound.
His expedition has been on the Antarctic ice for only two months when he decides to make his senior scientist, Thomas Poulter, his second-in-command and leave his fifty-five men at their base, Little America; he will stay by himself in a hut 123 miles to the south on the Ross Ice Shelf, or what he calls the Ross Ice Barrier. Few people have known about his plans—not even his wife, Marie, back in Boston with their four children, knows about the hut that was constructed in Massachusetts and then dismantled for shipping south, or of his intention to stay in it for six months to record meteorological data. (Later, various factions will assert that what he was really after was more acclaim for doing what had not been done.) When the news is delivered to Marie, and then to the audience that tunes into the weekly CBS radio program,* led by his friend Charles Murphy, for tales of the expedition, there is a stream of telegrams to Little America advising him not to go, but he doesn’t get the messages. He is already on his way.
His men shore his hut, which will be called Advance Base, with materials that have crossed oceans and ice. Everything he could need, including Grey’s Anatomy, a fur flying suit, a phonograph, canned figs, and two of his mother’s Virginia hams. The Barrier where they cut into ice and snow with saws and shovels to submerge his hut is a crystalline blank in a cold that can lift skin from a body. The Ice implies the infinite, and yet he finds himself in a room of 800 cubic feet with thirteen men, including two who will eventually become crucial for him, Pete Demas and Bud Waite. Some of the men arrived before him, hauling supplies with tractors, and have been constructing what he will come to see, in one of his lighter moods, as something like a child’s fort. He thinks this before he knows the force of his enemy. Before he finds his own, particular Antarctic.
When they sleep, the men snore so ferociously he opens the lid of his hut and goes topside to regard the night. Peeks in at three of his men in a tent, and walks to the dogs that are tethered to a line, curled tight as pearls against the drift. The Barrier opens up with the sounds of their collective howls. They are ready to leave him.
He, too, has been impatient for his men to go. On March 28, when it finally happens and they lurch off in groaning tractors that have to be coaxed into movement over the ice, he wants his solitude. The machines are poorly lubricated by oil that coagulates and freezes, causing the men to retreat, and he is unhappy when he hears the tractors making a return. When the men leave for a second, and final, time, he is caught by his emotions and rushes up the ladder to watch the diminishing forms.
The next time he hears Murphy’s voice, and that of radio operator John Dyer, the sounds are transmitted by radio wave. The antenna is two hundred feet long, and is supported by four fifteen-foot bamboo poles. Because sending voice communications from his hut would require too much power, he telegraphs with a crude knowledge of Morse code. Part of his first transmission to them reads:
All well.
His plan is to fill each day with data collection from eight instruments, among them thermographs, a barograph, a hygrometer (using a human hair to assess humidity), and a minimum thermometer with a heart of grain alcohol instead of mercury, because mercury freezes. The average temperature is -60° Fahrenheit.
The snow on the ground moves with such momentum that he will soon have to dig another tunnel from his hut to form an escape route, in case his other tunnels are sealed over by the drift. The aptness, then, of the word drift: its shifting nature, its shiftiness; a movement that could be leisurely or dangerous, but either way is in the possession of some other force.
Not all snow is the same, or the same kind of white. He writes that Antarctic snow lacks the transparency of ice, but the build-up on the ground is so hard that a shovel is almost useless against it. He has to carve it out with a two-foot handsaw. Once new snow has been hardened to the surface, it gives no sign that it has been walked upon. He calls it the whitest white you ever saw.
He discovers that two vital items he brought have gone missing in his hut: his cookbook and his alarm clock. He thinks, then, that waking at the correct time is something he can will himself to do through a natural internal sense of the hour.
But night is elastic, and he consistently gets it wrong. He records that it is his checking of the weather instruments that eventually gives him a rhythm. Two pens of the wind register, corresponding to velocity and direction, translate the air currents from the anemometer pole outside his hut. Other pens scratch out temperature readings, and he stands outside and writes his own observations of clouds, mist, and drift.
He says the barrier ice looks like platinum.
He was born in 1888 into a Virginia family that his biographer Lisle Rose writes was avid to regain lost status. He was a driven navy man, physically small and handsome, a daredevil who played football and led the gymnastics team at Annapolis. He hadn’t yet flown an airplane, but in a premonitory way would hurl his body through the air on the rings. At a practice for an intercollegiate championship, he decided to perform a new manoeuvre in front of a crowd, which involved relinquishing the rings to create a complex turn in midair before catching them again on the way down. He missed, and when he landed on his feet, his ankle snapped and he fell back (he would break these same bones two more times and eventually surgeons would have to nail them together). He wrote in his book Exploring with Byrd that he had been aware of silence as he spun, and I’ve wondered if perhaps this was what cued the fall, if silence, opening suddenly, had beguiled or distracted him.
When his repeated injuries stalled his naval career, he campaigned to learn to fly, finally getting his chance at Pensacola in 1918. Eventually understanding that aviation would be useful to polar exploration, he wanted to be the first to fly to the North Pole, which attempt in 1926 would end up mired in controversy over whether or not he actually reached it. In 1927, he made a nonstop transatlantic flight to Paris (after Charles Lindbergh), all the while allegedly nursing a fear of flying. He decided next on the South Pole and led his first private expedition to Antarctica from 1928 to 1930, and his second in 1933.
Funding for his first two expeditions to the Ice required him, through political and social finesse, to win over wealthy individuals and corporations (Edsel Ford and John D. Rockefeller among them). And though he was an admired figure, being the recipient of not one but three tickertape parades in his lifetime, his second trip generated hate letters (and also, according to Byrd, twenty thousand potential volunteers) because he was going in the midst of the Depression. Once he was on the Ice and had made the journey to his hut, there was more fallout. Some of his men were unhappy with his decision, which they took to be a kind of abandonment, and surreptitiously criticized his mediocre survival skills and lack of proficiency at Morse code. He got the notion to build a fort and despite the antipathy, he did i
t anyway.
He chased isolation as if it were something to be prized, as if that’s really the territory he wanted to see, while dragging along with him tractor loads of weather instruments, batteries, books, telegraph machines, and those Virginia hams; hauling, essentially, an essence of people without the people themselves. He seemed to want to know how far his idea could go. Even he would admit in Alone that he was seeking a certain experience, one that we might conclude involves the spirit or enlightenment or some kind of contemplation, though he would say that first he was there to collect data on the weather.
When he and his men of the second expedition arrived to the Barrier in two ships, the Bear and the Ruppert, they found the frozen buildings of the original Little America, which he had last seen in 1930. At the time, he and his men had left in a bit of a rush and doubtless were not terribly tidy to begin with, and so in 1933, Byrd found their frozen belongings.
Torn parkas and windproof, unmatched mukluks, dirty underwear and odds and ends …
On a table stood a coffee pot, a piece of roast beef with a fork stuck in it, and half a loaf of bread.
Also the pages of a calendar from 1929 with the days marked off. Someone went into one of the other buildings, found the old telephone, and rang them, so that Byrd would write, If the Lion of Judah had crawled out from under one of the bunks, we couldn’t have been more taken aback. Somebody else flipped a switch and the lights glowed a little. They found pans on the stove with frozen food in them and coal in the scuttle, so they warmed the food and ate it, finding it to be the same as when they had left three years earlier. This is merely the illusion of permanence, however, a way that the Ice will convey constancy even as it perpetuates change, the way that it will obscure the provisional nature of provisions and calm the human presence that is unsettled by the way that everything of substance will eventually disappear.
