Fallen: A Trauma, a Marriage, and the Transformative Power of Music (7 page)

Back at Sassafras, people have begun to arrive. Guido, Lou, Ryan, Dave. My mother, who looks healthier now than she did even a few weeks ago. She has gained some weight, and the unnatural red chemo flush is fading from her cheeks. But her breath quickens just crossing the floor of the cafeteria. Her hair and eyelashes have yet to grow back, and her bald head is wrapped in a rust-colored cotton bandana.

“Your Georgia O’Keeffe look,” Simon said when she came to hear him play the Sunday jam at the Garden Bay Pub a few weeks earlier. “It’s working for you. You look great, Kathryn.”

She holds me now, too tight, too long. I am suffocating against her shoulder. I am relieved to see her but also, irrationally, angry. She shouldn’t be here. A hospital is the last place she, with her weakened immune system, should be.

“You must be so frightened,” she says as she reaches for and holds Eli, and he howls, an animal noise, part grief, part anger, while he pushes her away and grabs my hand.

“I can’t stay here,” he says again. “I need to get out of here.”

It is inconceivable to me to leave the hospital, so Guido takes Eli to the hotel room Dave has booked for us and paid for. It is a hard realization that I can’t make this better, or safe, for Eli. But I feel some relief too that he has left with Guido. There is no one I trust more to be with Eli than Guido—that is why he is Eli’s godfather—and now I can focus on the moment when Simon’s mother, father, and sister will arrive. The moment when I will tell them what I have just told Eli. The moment when I have to repeat the litany of dire outcomes Dr. Griesdale outlined. The moment when I have to tell them Simon’s spinal cord is severed. I have repeated this new information to Guido, Lou, Ryan, and Dave, and that was hard enough. Lou gasped and doubled over, suckerpunch to the gut, when he heard about the spinal cord. Since the moment he arrived at our kitchen door, his every action and gesture has told me that we can navigate this crisis together. That everything will be okay. But as he crumbles with this new update, it is clear we are all now passengers in a car that has spun irrevocably out of control.

The thought of telling Simon’s family this is unbearable. In the pauses between breaths I continue to clutch at the thought that this can’t be happening. It is a thought thick with desperate, childish need, a need that, with neither logic nor faith to fuel it, magically, savagely, continues to persist: if they don’t come and if I don’t say it out loud, it won’t really be happening.

SIMON WENT BACK
to Toronto in mid-March to visit his family—his parents; his sister, Emily; her wife, Sarah; and their two children, Oscar and Alice—while Eli and I stayed at home. It’s been over a year since I have seen any of them, but here they are—Marc, Lorna, and Emily—sharp-edged and white with worry, standing at the entrance to Sassafras. We huddle in a small circle, barely able to hug hello for the weight of words hanging between us. Although I have been doing nothing but waiting, their appearance seems sudden, out of context. Bewildering. I feel as if I am meeting them for the first time, the familiarity of their faces only a pleasant déjà vu, a fleeting dream of a sweet but distant previous life.

In family photos, Lorna is the person who gazes directly at the camera, head tilted back, chin jutting out in a defiant thrust, suggesting a personality who is unafraid, even embracing, of confrontation, a personality well suited to her successful career as a criminal defense lawyer; but that bristling, pugnacious energy is absent today. She is deflated, trembling, her hand tentative on Marc’s upper arm. Marc, a lifelong athlete who, in his mid-sixties, still plays tennis and hockey a couple of times a week, is the guy in the family who gets things done, who keeps things running smoothly. While Lorna always seems to step forward into the fray, Marc’s most characteristic gesture, especially when he is particularly intrigued or troubled, is to take a step back, folding his long arms over his chest. This is how he stands now, waiting.

“Let’s go somewhere quieter,” I say, stalling. I lead them down the long hallway to a small, semiprivate anteroom midway between Sassafras and the
ICU
. Marc and Lorna sit across from me. Two Monet-like prints hang on the mauve wall above their heads: a stream running through an amber autumn forest and a path winding through spring-green trees. Emily sits beside me, leaning in toward my shoulder. She wears her Accordion Revolution shirt, and it evokes a flutter, a shadow memory, of happy days in Toronto: streetcar rides in the snow, Earth Day on the Islands, Kensington Market, after-hours at the Dakota Tavern. She is bracing herself for the news I am about to deliver, but she is also lending support so I can get through saying it.

I am afraid.

They will want to know why. Why were we on the Sunshine Coast? Why weren’t we in a city where Simon could more reliably work as a musician? Why were we so far away from his family home? For his family, Simon and I have never stopped being the rash young couple tripping into parenthood before we were fully prepared. Our move west was an integral part of our growing up, but I wasn’t sure that’s the way the rest of the family perceived it.

And I am guilty.

Guilty for not reading the signs properly.

I have such a weird feeling. Like everything in my life is about to change. Totally change, like on a molecular level. Like my very atoms are shifting.

I am guilty for not listening hard enough, for not really hearing what Simon said. I am guilty for not dragging him back to bed, insisting he ice his sore wrist and play hooky with me.

But when I am done there is no anger, no recrimination, no pointed finger. There is pain and there are tears and there is fear and there is love. Unexpectedly, I am a little stronger having them here.

I take them to the glass
ICU
room, and Marc, like Eli, is almost physically unable to walk into the room. He collapses onto the nurses’ station, his anguish a physical force. He steadies himself and makes it in on his second try.

The left side of Simon’s face balloons out from the gauze bandaging. Every time I enter this room, the swelling is worse. The
ICU
nurse has contacted Dr. Haw to report that Simon’s left pupil, while still reacting to light, has become sluggish.

“But it’s hard to monitor it,” the nurse explains. “The swelling is so bad I’m not really able to open his eyelid.”

MANY PEOPLE ARRIVE
from the Sunshine Coast. I appreciate their presence and the energy they cultivate in support of Simon, but I am unable to repeat the news of his prognosis over and over again. I have told Eli and Marc, Lorna and Emily, and I can do no more. My mind is rubbery and full of empty spaces and I am unable even to hear the well-meaning assertions that Simon is strong. That if anyone can make it, Simon can. The things they say I believe to be true—Simon
is
strong—but all that is beside the point right now. I nod my head blankly when they speak and feel as if I am agreeing to an obvious and potentially dangerous lie.

“Moments in time,” my friend Susann whispers in my ear as I lean into her hug. “These are moments in time.”

This thought is a gift that acts as a buoy, a kind of life-saving floatation device, and I find myself repeating it over and over in the coming days just to keep my head above water.

THERE IS NO
new update on Simon’s condition, and in the early evening Marc and Lorna retire to Jer and Barb’s house in North Vancouver. Like me, Emily cannot conceive of leaving the hospital, and she is determined to spend the night with Simon. She promises to call if there is any change in his condition, allowing me to retreat to the hotel room and spend some time with Eli.

The hotel room is a block away from the
VGH
Emergency entrance. It is almost seven o’clock in the evening when I leave, and the heat and the traffic have died down. It is a recognizable summer evening, similar to so many before. Still, the world outside the hospital is changed, sliding by on a different temporal tract; everything is out of sync. Disjointed daylight, the sun’s rays splinter the air, fractal and weird and gleaming but drained of any real warmth or sparkle. Outside, life has sped up, and I have slowed down. Guido gave me clear directions, but it is only when I enter the lobby of the Park Inn that I am convinced I will be able to navigate the distance from hospital to hotel room.

Eli and I lie on the king-size bed facing one another, giving each other foot rubs while we talk. He wants to leave Vancouver and return home to the coast. He doesn’t think he can spend long days at the hospital, waiting. He could go home and get a job. Do something useful. I don’t know what to say. I don’t want him to leave. What if he leaves and Simon dies before he can return and say good-bye? I want him beside me. Is that selfish? I don’t understand how he can leave.

“I can’t
do
anything here,” Eli says.

He is like his father. It would drive Simon crazy to sit around waiting. Simon would understand and support this need of Eli’s to not sit idly by. So I make a few phone calls, and a plan is quickly put in place. Eli’s soccer coach, John, and his wife, Colleen, will take both Eli and the dog, Paloma. Eli will travel back to the coast tomorrow and return to Vancouver every few days to visit. I ask if he has any questions.

“If Simon... If he, I mean, will he have to be in a—a
wheelchair?
”

I hear in the rasp of his voice that this is the worst possible thing he can imagine. And so I tell him, with an assurance I’m not sure I believe, that a wheelchair is not the worst thing.

“Think about it,” I say. “Simon likes
watching
sports. He doesn’t like
playing
sports. He plays guitar, and he can do that just fine in a wheelchair.” As I speak the words, I become more confident. “And he has the kind of personal resources, the kind of strength, that, as long as he could play music, he could deal with a chair. Right?”

“Yeah,” Eli says. A reluctant agreement.

“I know we’re not religious,” I say, “but somehow we have to find a way to pray for his head. And his hands. If he has his head and his hands, well, then a wheelchair? We can work with that.”

“If he stays there, in that bed, for a long time,” Eli asks, “will he get a bedsore?”

It is a question that robs me of all my breath, a question so intimate, so raw and visceral, that I am almost certain my heart will shatter in my chest. A question that belies my sense that perhaps Eli is too young still to get it. He gets it. He is afraid, but he is still able to reckon with this, the hardest of human truths: that the body, despite all our grand schemes, is so utterly fragile. Vulnerable beyond our own believing.

“A bedsore?” I say. “I don’t know, love, I don’t know.”

ELI TURNS THE
TV
on low and we lie together. While the
TV
is on, I drift in and out of consciousness—more in a state of troubled exhaustion than of sleep—but as soon as he turns the light off I lie wide awake. Adrenaline and a pure, basic fear form a clenched fist in my gut. I tell myself to breathe. And I do—I breathe in and out, lying still in a parody of sleep, until about two o’clock, when I leave the hotel and return to the hospital. Emily has retired to the reclining chair in the
ICU
waiting room, and I take my place beside Simon, beginning a pattern: Emily and I split the night into two shifts; she is there from ten in the evening to two, and I am there from two to morning.

Each time I enter this room there is a transitional period when I have to reckon with all the mechanical sounds and flashing red lights and high-pitched beeps before I can reach Simon, the human body beneath all the machinery. My breath pattern alters to match the slightly faster pattern of the ventilator, the airy inhale, the
whoosh
of the exhale—both inhale and exhale too loud, too short, and too symmetrical, reminding me with every breath of this basic fact:
Simon can’t breathe on his own.
The noise of the machine would remind him of Darth Vader. I smile a little. Simon recently heard a comedy skit on the radio, a comedian from Newfoundland who translated memorable movie scenes into his hometown dialect. The
Star Wars
scene cracked Simon up, and for weeks he reenacted it every chance he got.

“I’s your daw, Luke,” I whisper to Simon, breathing audibly with the ventilator, a mock Vader voice. “I’s your daw.” The machine keeps up its robotic breath, and Simon doesn’t turn his head and smile at me, the way I keep half-expecting him to, but still I am comforted by this shared joke.

To the right of Simon’s bed is a large computerized panel that flashes a series of numbers, which I watch compulsively for clues to Simon’s internal world, trying to discover a pattern similar to the one I witnessed the night Eli was born. Does Simon’s heart rate speed up when I speak to him? Does his pulse quicken when someone enters the room? But there are no patterns here; the mini strobe lights of numbers fluctuate erratically. The most important number represents the amount of pressure inside Simon’s head, and every time this number significantly changes I am compelled to share it with the night nurse. She is gentle and considerate with me, but after the third or fourth time I call her into the room, she offers some advice.

“It can be really easy to get distracted by all the machines and the numbers, but you don’t have to watch those. That’s what I’m here for,” she says, bringing me a blanket that has been magically warmed and wrapping it around my shoulders. “You just need to be here with your husband.”

When I am able to distance myself from all the life-sustaining tubes and pumps and monitors and just be with Simon, I find this time, the late night bleeding into early morning, peaceful. It is quiet and I am alone with him. I have heard that people are more likely to die during the long hours of the night, although I don’t know if statistically this is true. It doesn’t matter. This is when I need to be with him. Here, I breathe with Simon and the ventilator, lending my respiratory support. Breathe in. Breathe out. Breathe in. Breathe out.