by Maria Mutch
Gabriel was already receiving the therapies and communication aids that are normally applied to autism and that have never been denied us (a perk of significant and obvious need is that you rarely need to argue over it), but she had one thing to add: a medication to treat his physical and vocal tics, in the hope of reducing the frequency of his screaming. R and I, who had always used noninvasive therapies for him, were conflicted. What we put into his body was something I had obsessed over; he hadn’t tasted processed baby food, for instance, until he was fourteen months old when we resorted to it on a camping trip. In the case of his shrieking, and leaving decibels aside, how do you decide what is legitimate communication and what is an affliction? His right to make the sound had to be weighed with his right to be freed from it. Here is the thing of this odyssey: we are so often having to confront our preconceptions. Treating his seizures with medication had been an easy decision, or no decision at all actually—it was a given. But the specificity of treating his screaming—the screaming that seemed both of him and not of him—moved into that quagmire of children, drugs, and psychological disorders.
Except for this: we were witness to both the sound and Gabriel. It seemed like magical thinking to be offered a pill to ameliorate a sound—one that held the place where speech had stood—but there it was, and almost unbelievably, a low dose of it, called guanfacine, worked to some extent. Or rather, used in conjunction with nutritional and behavioural therapies, it works some of the time, lessening the severity. When his bouts of shrieking and bouncing sometimes still turn up in the night, which occurs much less often than it once did, we’re reminded of their acuteness, how they fragment the night, but in our experience of autism, one thing is always relative to another. Sometimes the feat of simply managing can indicate, in some way, a comparative success. What I can say about the sound is that there is less of it and more of Gabriel.
The Ice
The Ice books that come to the house usually mention Ernest Shackleton. In 1914, on his third trip to the Antarctic, his expedition turned dark when one of his two ships, the sturdy Endurance, became trapped in the pack ice of the Weddell Sea and was slowly pressed to death.* The photographs show her turning brittle, turning into a ghost, her rigging a web of crystallized threads. She looks massive and fragile at the same time. After many months of being held by the ice and battered by the undulating pressure of its grip, she was approached by a group of emperor penguins who, lured by the sounds of the fracture, stopped to watch. About ten of them were gathered there and they made a strange, collective cry, prompting one of the men to say, Do you hear that? We’ll none of us get back to our homes again.
Home. The specter of the place we’re always shooting for, the nebulous point Shackleton and his men put at such a terrible distance that penguins came to cry. Home consists of what we think we’re entitled to, what we were born to, and all we want is to get back to it. The irony is lost in the night but not the desire or the fear that we’ll never find the way; those stick our eyelids open so we can continue scanning the dark for the shapes we don’t recognise.
When Shackleton and his men, who had continued to live on the ship, finally sensed its inevitable demise, they raided her for essential items and set up camp on the ice. Shackleton ordered the men to give up anything unnecessary to survival and made a show of ripping some pages from his own Bible, the one given to him by Queen Alexandra, for keeping; he placed the Bible on the pile of redundant items that the snow was claiming. Fresh words were another thing, however, and the men with diaries were allowed to keep them.
There is this, too: they had a radio receiver with them, meant to pick up Morse code broadcast from the distant Falkland Islands at the start of each month. They tuned in and waited, none of them expecting much, as the receiver strained for radio waves in the cold air and all they heard was static.
Three more weeks of suspension, the ice pressing hard on the ship, when suddenly Shackleton glimpsed movement, and the Endurance tipped, raising her stern. She gave in, and the ice, resolute as any predator, gulped her down. When Shackleton went to record the event in his diary, there was only the open sprawl of the page. He was able to leave just one sentence:
I cannot write about it.
After that, much hauling and clawing to keep alive. Shackleton and his companions sailed the wild sea in three small boats saved from the Endurance and landed at Elephant Island. He chose five men to accompany him further in one of the boats, the James Caird, just twenty feet long, to attempt at reaching South Georgia Island and its whaling station, a crossing of 800 miles. The remaining men waited on Elephant Island, using the other two boats, overturned, as sleeping quarters. The James Caird reached South Georgia after approximately sixteen days, and Shackleton continued over land with two of the men to find civilization at Stromness, which lay on the other side of seemingly impossible terrain. After finding the station manager and declaring who he was, Shackleton set in motion the necessary rescues. First, to collect the three men waiting on the other side of South Georgia, and then after five months and two aborted rescue attempts, he obtained an old steel-hulled boat from the Chilean government and found his men on Elephant Island. All this, and not a single casualty. Each of the men who originally had been on the Endurance got to go home.
provisions
On the other side of the Newport bridge, a band is playing jazz. Crossing the bridge is like crossing over. Gabriel dozes in the backseat of the car as he and I drive through the dark, from streets rimmed in farmland, south to the squat bridge that leads to Jamestown, to the Pell bridge with its cathedral arches and strings of lights and the quiet black sea underneath. It’s quiet, too, in the car. I shut off the music as we coast along the bridge, under arches, toward the little club that waits. Gabriel’s eyes flutter open—he knows we’re getting close. Back at the house, I tied his shoes as he sat on the stairs and told him where we were going, that he would be hearing jazz, and he smiled, then galloped to the car, twirling one arm like a pinwheel, which he does when he tries to speed up. On the other side of the Newport bridge, his language is being spoken.
The guitarist says they are going to do “Summertime,” and a guy who has been waiting to join in springs up from a bench near the street window. The musicians waiting to be called usually have a trumpet or sax, or something more exotic like a djembe, but this guy just has his voice and a mic. They start in on an upbeat, peppery version, very different from the languorous original but it’s there, “Summertime,” and I look at Gabriel, how he hugs the notes and presses into the grooves. This particular song belongs to his birth. After he was born and being cared for in the special care nursery, where he was hooked to machines and glassed in, I was alone in a room down the hall from him. I had the curtains drawn and the lights off when a cleaning woman stepped into the room and stirred the light of the open door with her broom. While she worked, she sang Summertime and the living is easy, the entire song as she swept the room and emptied the garbage can. Your daddy’s rich and your ma is good lookin’. At the time, the duet with Armstrong and Fitzgerald was one of my favourite tunes, and it seemed like a gift that she sang it. Hush little baby, don’t you cry. She left and I was supposed to be resting but, even after a couple of hours, sleep was impossible. R and I hadn’t been able to get hold of most of our friends and relatives earlier in the day—this was in the days before smartphones, and we had called people on the phone beside my hospital bed to say that Gabriel was here. The following day would bring a chorus of responses, but that day, the day he was born, the voices were uncannily absent and it was as if the world had turned away. The nurses told me to grieve, ostensibly for the child that didn’t turn up but, like sleeping, this also seemed impossible. There was no grieving for me to do, and as anxious as I was because he was in the intensive care unit, the moment of my hesitation had long passed and something else was settling in. I realised I was deeply in love, in a matter of hours, with my new son. It was past midnight, and I got up from the bed, movi
ng my sore body carefully, and emerged into the light of the nurses’ station where one of them sighed, We can’t seem to keep you down. I walked past them and went to sit in a chair beside Gabriel in his incubator and watch him, so small and powerful.
So this version of “Summertime,” the one he and I are listening to in the club, the one with the guy planting his feet deep in the ground while singing, is different than the usual meandering kind. It has a fast tempo and a raucous band turning the whole thing on its head. It gets more and more celebratory, and louder. There is no room for grief here and no cause. The drums are pounding. I lean toward Gabriel and tell him, This one is yours. I don’t know if he can hear me, but it hardly matters; he is inside it.
It’s time to take him home, head back through the night and over the bridge. The band has stopped playing, they’re taking a break, and suddenly what has been stable becomes brittle for Gabriel. The musicians are ordering drinks and talking, heading for the back, or checking their instruments; they’re standing on the curb with their cell phones. In the pause that forms, the desultory rushes in. And maybe that’s it: Gabriel becomes aware of the irritating blandness and unpredictability of the everyday, the things that are happening when jazz isn’t. I imagine he contends with his bodily sensations—the way his shoes feel, or the skin on his hands—at the same time that he seems to become aware of what is around him—a row of glasses on the bar, someone saying jimmyheyman and shitnofoolin, a dollar bill that catches in the draft from the door and flits to the ground like a giant moth, a woman’s orange blossom perfume. I have tried to imagine what happens for him, something like a progression of notes: the voices, the shrill laughter, the siren out on the street, and most of all, the absence of jazz.
I am thirty feet away from him, wedged in between people at the bar to pay our bill, and when I glance over at him, I can see that it’s beginning to happen: the opening of that secret world. Do you belong to a secret society? The signal isn’t like crying or a crumpling face; instead, his eyes flash and he begins to bounce, first a little and then more, and then he starts to laugh and shriek, his expression suddenly vacant. There is no stopping the tempest once it starts, and whatever connections he has formed with other people and the music are lost. As I hurriedly pay the waitress, a man goes up to him and puts his hands out so Gabriel can give him a high five, and I think, Don’t fire him up. The space that I have to cross to get to him suddenly seems like the one in dreams, dark and dense. Gabriel clouts the guy merrily, once, then again, and the guy just laughs, and he does it again. A flurry of hands and shrieking. Heads turn and the whole place is beginning to see him coming apart. I finally reach him, apologize to the man, saying, He needs some space, and turn to grab our coats from the rack. In the seconds of doing so, it begins again, the guy teasing him and more flailing and shrieking. I suddenly hear myself hissing Just-back-off-give-him-some-room! and taste something like kerosene in my mouth. I grab Gabriel’s arm and pull him toward the door while trying to put his jacket around him. He is so charged I can feel him almost shimmering. Night flies open in a buzz of streetlamps when we hit the sidewalk.
The car is quiet as we start over the bridge with its sequence of lights: sequins. Gabriel watches the night out the window and he’s calm again, settled into his seat, and after a while makes a small chirping sound. That’s right, Gabe. You’re all right. Remorse courses through; I wish I had protected him. Home, all I want is to be home. The streetlights begin to disappear, and we go farther into the dark until we are the only car on the road.
* The other ship, the Aurora, moored at Ross Island, on the other side of Antarctica, also became trapped in the pack, drifting 700 miles away from the ten men who were left stranded on the Ice; three of the ten men perished, and the remainder survived 199 days before rescue.
4 a.m.
delirium
PROVISIONS FOR BYRD:
3 Tables
2 Folding Chairs
2 Mirrors (1 big)
1 calendar
3 small floor rugs
1 fire proof asbestos rug
3 aluminum buckets
2 wash basins
2 candle holders
1 corn broom
2 whisk brooms
1 Pyrene fire extinguisher & 3 fillers
5 Automatic bombs & 4 plain bombs
1 can lubricating oil
1 5-gal. can packed with toilet paper
400 paper napkins
paper clips
3 doz. pencils
1 box thumb tacks
1 box rubber bands
2 reams 20 lb. bond paper (1000 sheets)
scratch pads
second sheets
carbon paper
1 box Lux toilet soap (50 bars)
1 “laundry chips (20 boxes)
1 Thermos bottle
1 Thermos jug
2 decks playing cards
4 yrds. oil cloth
50 big filing envelopes
drawing paper
cook books
hand grip
Quill tooth picks
selection of books
selection of records
Phonograph and spare parts
When I open Byrd’s book, he is having nightmares. Sleep eludes him, too, or otherwise comes with terrors. Pains stab his head, his body, and dizziness brings him to his knees when he attempts to climb his ladder to check the aurora. He notes the irony that extreme cold is not really what is undoing him, but carbon monoxide poisoning. His enemy has become just another element in the polar night that slinks and blinds and, moreover, is locked inside the hut with him. Ice climbs the walls at what he estimates is an inch a day. The aurora unravels with or without him.
He sleeps intermittently, performs his tasks methodically, as if in a slow-motion film. Desire no longer nudges at music or books—his phonograph takes too much energy to wind, and he can’t concentrate on his reading—but grows within a rotation of other needs: faith, warmth and, especially, thirst. He’s too weak for his usual ice retrieval and resorts to getting on the ground of his food tunnel, where his footsteps have loosened a trough of dirty snow, and pulls some into his bucket. He can’t wait to melt it on the stove, so he heats it with alcohol tablets instead and drinks it down.
How the body deflects exactly what it has invited: he vomits. He tries again, convincing his body with very little sips, and returns to his sleeping bag. He makes the simple plea that has been my own on so many nights: he begs for sleep.
When he is lucid, he records the day’s actions as a defence against his increasingly gauzy memory. Tending to the thermograph and register, he is bitter and thinks, Without me they could not last a day. Between the scholars back in civilization and the night’s wilderness, he is just a data collector taking the Barrier’s pulse, even as it is costing him his life. The machines’ rhythms have become emphatic—he cannot let them down; they connote being. He calls his thermograph and register resolute and faithful, also remorseless. His stove is a villain, and his bucket greedy. The flames of two red candles are—and here his tenderness is almost unbearable—friendly. Inside and out, the ice creeps and invades. The dark is an increasingly present companion, a houseguest he is afraid to repel with his lantern because it uses gasoline, but he lusts for light.
His appetite has been meager, but he eats a piece of chocolate (whatever explorers deem vital to survival in Antarctica, they never seem to fail to include chocolate) and an Eskimo biscuit before passing out again. When he comes to, it is as if during sleep he has been somewhere else, maybe home, and so he is newly confronted with his situation, wakes to see that he is still at a small table in a small hut on the enormous Barrier. He slumps forward, sobbing.
In Camus’ version, Sisyphus, who has woken up to find himself in the underworld, convinces Pluto to let him make a brief return home under the pretense of having to chastise his wife and so Pluto lets him go. But when he had seen again the face of this world, enjoyed water and sun, warm st
ones and the sea, he no longer wanted to go back to the infernal darkness. Eventually, of course, he is hauled back to the underworld where his rock is waiting. He sheds his rebelliousness, turns forever to begin again, and, alongside scorn and resignation, he is said to experience something else; Camus leaves off with the line, One must imagine Sisyphus happy. It seems to me that when Byrd starts sobbing, he isn’t just breaking down but actively rebelling because the smiles of earth are still with him—unlike Sisyphus, he retains hope of getting home.
Here in the comfort of my house, I can watch him in the intimacy of his hut, in the glow of the stove or some candles, as if his rebelling is not my own and I’m indifferent to him. But I’m not indifferent. The home I want to reach is the one where night has returned to its slippery, silvery self, where my child isn’t governed so much by waking. I’m not indifferent to Byrd’s suffering because I recognise it. I can almost reach out and touch him on the shoulder, as if to nudge him out of his nightmare. He is sobbing while fear consumes him at the thought of what will happen to his wife and children should he not make it out of this place. I know how his story ends, and I want to tell him that he’ll be safe.
