Fallen: A Trauma, a Marriage, and the Transformative Power of Music (19 page)

“Do you think you’re ready for rehab?”

“Yes. I want to go,” Simon says, measuring each word carefully so that there is no confusion in his meaning. “Staying here means staying in the same place. I need to keep moving forward.”

THE NIGHT BEFORE
the transfer to
GF
Strong is a sleepless one. Simon has butterflies—the kind, he says, you get the night before starting a new school. On the morning of August 21, before the transfer, Simon and I are accompanied by an attendant over to the Diamond Centre to get his hearing checked. The results of the test are devastating. The hearing loss in Simon’s right ear is 100 percent, and it is irreversible. Hearing aids or cochlear implants would be of no help. His right ear is gone. This, I think, will be the diagnosis that breaks Simon. I feel it breaking me.

“It’s tough to get that news,” I say as the attendant wheels Simon away, through the underground parking lot, past the sign for the morgue and the tissue bank. Despite the heat of the day, I shiver at the thought that the rest of Simon’s skull is in a fridge somewhere down here. I reach for his hand. “How you doing, Beau?”

“Well,” he says, “it sucks, but... one ear won’t be too bad for studio work. I can master in mono now.”

I don’t exactly understand the benefits of mono mastering, but it doesn’t matter. He is still smiling.

“WHAT CHANGED?” A
doctor in the Infectious Disease Unit at St. Paul’s Hospital poses this question to Simon and me two years after he is discharged from
GF
Strong. She is compiling a case history for Simon, and when we finish describing those eleven days between the two interviews, she is curious. “What changed between the first rehab consult and the second one?”

Three things pop into my mind. “We requested the morphine drip be stopped,” I say. “His fever eased up. And we started playing Bach in his room. Glenn Gould playing Bach. But I don’t think those changes made the critical difference. I think at that point it was just a matter of time.”

So... what
did
make the critical difference?

So many moments contributed to making a difference, starting at the very instant of Simon’s accident. His co-workers acted efficiently, calling for paramedics and insisting even before the ambulance arrived that an Air Evac was required, ensuring that, despite our distance from the hospital, Simon was in an operating room just over two hours after his fall. It made a difference that we live in a country where health care is universal and that the quality of care is, at any given time, outstanding, especially so in an emergency department or intensive care unit. It made a difference that Dr. Haw and his team weren’t off that day or having lunch or in the middle of another surgery when Simon arrived.

I wrote in my letter to the community that its support made all the difference too: I believe that now as I believed it then, though there is a qualitative difference in my belief. Now, the idea of community “love” and “support” has drifted back into the more abstract realms it generally occupies. It was different during the time Simon was in the
ICU
: I experienced that support as a vital, physical force buoying me up. It is a word—
buoy
—that surfaces often both in my journals and in Emily’s emails because, I think, it most accurately describes the sensation we had of riding the thought-waves focused on Simon and his healing at that time. It was as real and as concrete as a smooth stone placed in the palm of my hand and, although its impact is not as clear-cut as the effect of the brilliant intensive care he received, it too made a difference.

I also believe, with the nonscientist’s reliance on faith, not proof, that if there is any type of brain designed to cope with massive trauma, it is Simon’s. A highly associative thinker, an improviser, Simon had been adept at creating reality out of chaos in his solo improvisational work, and this to me was precisely the work required of him to resurface from the coma: a massive effort to re-create reality out of chaos. Was it Simon, then—his particular brain—that was the critical difference?

As a family we made a commitment to stay at Simon’s bedside around the clock, to never leave him alone, and it is tempting to pride ourselves on making a difference. Was it because Emily was brave enough to sing him through the darkest time? Or because Marc had spent a lifetime sharing songs with Simon, and that shared musical experience formed a bridge that allowed Simon to return from the depths of his injury? Was it because Lorna, despite Si’s annoyance, worked so tirelessly to open his mental files? Or because, at a more basic level, Simon inherited her
DNA
fire and because, like her, he pushes and strives, always? Or was it because, as Simon claims, he returned for me and Eli, that it was love that called him home? Did these things make a difference? Yes and no.

Yes, because when you reach that invisible dividing line between life and death, it is clear that each one of those individual moments matters. It all matters. And I am proud of us all; the generous sharing of human strength, skill, and spirit that I witnessed is, to me, nothing short of miraculous.

And no, because it would be a mistake to say that any one of our individual efforts might have made a difference. The brain is a mysterious organ, and each injury is unique. A neuropsychologist once told Simon and me that in her practice she had seen amazing things: people who had had horrific accidents—falling out of a helicopter, for example—who made significant recoveries and others who slipped on ice and were never the same again. Head injuries are impossible to predict, she told us. The brain is more than a sum of its parts. And I know that there is a mother today who sits, as I write this, at the bedside of her child, a child equally as gifted and bright and strong as Simon, waiting. A mother who pours just as much love as we did from the vessel of her body into the broken vessel of her child, who waits still. A mother looking for the key to wake her sleeping beauty, a key that is perhaps impossible to find.

There was no one key to Simon’s recovery. It was and continues to be, like the brain, more than the sum of its parts. There was the miracle of intensive care units and soccer coaches and best friends and strong families. There was the miracle of music. And, then, we also got lucky.

AND TO ALL
those who wait today, my thoughts go to them with the hope that amidst the deep waters of grief and fear they are also blessed with the buoyancy of great love:

Be strong.

Be safe.

These are moments in time.

ALTHOUGH IT IS
only a ten-minute drive, the trip from
VGH
is exhausting for Simon. Eli and I travel with him in the
GF
Strong transport van; Simon, in an electric wheelchair, is tilted back at an angle to alleviate the sickening vertigo and nausea he experiences when upright. But even when he is tilted back, the movement and jostling of the van are excruciating. He doesn’t complain, but Eli and I clearly see the waves of nausea rippling across his face with every bump and swerve. Arriving at
GF
Strong, he learns that, for the first time since being hospitalized, he will share a room with someone else. Richard, the smiling nurse who greets us, introduces Simon’s new roommate, an elderly man named Wilhelm who suffered a stroke while cleaning his gutters at home.

The two hospital beds in Simon’s room are separated by a thin curtain, and we are all relieved when Richard directs us to the farthest bed, the one adjacent to the large bank of windows that looks out onto the tree-lined residential streets surrounding
GF
Strong and not, thankfully, the bed closest to the door and the brightly lit, busy ward hallway. There is a shared mirrored sink on the wall opposite the beds and a door leading to a large bathroom, as well as closet space for both Simon and Wilhelm. Richard chats with Simon as the rest of us unpack the surprising amount of stuff we have accumulated over Simon’s time at
VGH
. Lorna places the jasmine plant on the windowsill and hangs the few pieces of clothing we have purchased for Simon in the closet. Marc stores the boom box, the
CD
s, and a box full of letters on a shelf underneath the bank of windows as Eli and I hang the many photos of family and friends, along with the hand-drawn pictures from Simon’s niece and nephew, Alice and Oscar, on a large corkboard. Richard and Simon continue to talk, their conversation punctuated by the exclamation mark of Richard’s laughter. Richard is a tall man, and his playful manner is a welcome relief from the daily parade of serious and formal medical professionals we encountered at
VGH
. He is warm and generous, and his welcoming cheer is infectious. In short order we all feel more settled in. All the movement, activity, and conversation takes a toll on Simon, though, and as soon as he is airlifted into his new bed, he falls into a deep sleep.

MOVING DAYS ARE
hard. This has been our experience with every ward or room change that Simon made at
VGH
. Each move is, however, a forward, positive one; we know that and are appreciative that this is not a move, say, back to the
ICU
. Still, the chaos of a moving day is difficult to navigate. Each new environment dramatically underscores how physically vulnerable Simon is. Each new environment has its personalities, rhythms, routines, and rules; having to constantly readapt is draining for us all. Things change in only a few seconds, the time it takes to drop ten feet through the air, and they keep changing and changing. It will never stop. On moving days, I know, as an empirical fact, that I will never have enough energy to keep up with the whims and caprices of constant change. The best I can do is hold on. Tomorrow, possibly, will be better.

GF
Strong is a busy place. People in wheelchairs—some manual, some electric, some equipped with ventilator machines and controlled by a person’s breath—roll through the hallways. People with crutches and braces on their legs propel themselves with a barely contained momentum down the hallway, while others shuffle aimlessly, poking their head into the nurses’ station, the kitchenette, or other patients’ rooms, as if searching for something vague but precious they have lost. Wilhelm, Simon’s roommate, inches down the hallways with his walker. He barely acknowledges our presence, entranced as he is by the running water that flows from the tap into the sink at the far end of the room. He turns the tap on and watches the water for almost twenty minutes at a time, murmuring softly to himself.

While Simon sleeps, Lorna explores and returns convinced that Simon is on the wrong floor. The Spinal Cord Injury floor just below us is where he should be. It is, she argues, busier, brighter, and more cheerful. Not as dismal and depressing as the Acquired Brain Injury ward. When Simon wakes, she encourages him to discuss how sad he must be to find himself in this place.

“It’s depressing here, don’t you think?” she asks. “I find it depressing.”

Once again, her question makes me angry and weary. Right now Simon isn’t sad or depressed. He is less aware of his larger surroundings and more focused on the immediate issues of navigating this new environment. He is nervous but combatting anxiety by asking questions and trying to get a handle on what is expected of him starting tomorrow. Rehab means gaining independence, but what exactly does that entail? Does the staff realize that having a bowel movement is not an event he can control? That he needs to travel everywhere with the catheter bag? What will happen in the morning? Does he have to get up into the wheelchair for breakfast? Where will he go for physiotherapy? For occupational therapy? Is he supposed to go alone to these rehab sessions, or can I come with him? I am not allowed to stay overnight in his room, as I have done at
VGH
, so he is facing his first night alone. All these questions weigh heavily, and he places a lot of pressure on himself to get things “right.”

Lorna is concerned about the appropriateness of Simon’s emotional responses. From her perspective, sad, depressed, and anxious are the only intelligent responses to his new situation. I resent the suggestion that a downward spiraling of emotions should be positively associated with his overall cognitive recovery, that somehow sad, depressed, and anxious means he doesn’t really belong here, on this ward of the walking or wheeling wounded. I ask her to join me in the hall so that we can talk privately.

I talk; she listens. She talks; I listen. We don’t come to a consensus except to agree that the tension of moving day is getting to us both. We leave it at that. Lorna and I have very different approaches, but we are both stubborn and opinionated and, on this occasion, as exhaustion takes over, we reach a stalemate. Also, we are both right. Yes, of course, Simon needs our support to feel contained, protected, and safe, but he also needs the space to express the havoc of grief, anger, and fear that must be brewing inside him. And as much as I fuss about the need to cultivate a positive approach toward rehab, the truth is I am terrified to open a door onto these more difficult emotions, each one its own dark chasm, too deep and wide, too potentially bottomless, for us to attempt to cross right now.

Simon is still eating soft and pureed foods and has been designated at risk for choking, so he is not allowed to eat in the cafeteria on the main floor. Instead, we are directed to a small nurse-supervised room down the hall from his bedroom. Because the room is small, entire families are not allowed to eat with patients; I remain with Simon while Marc, Eli, and Lorna eat dinner downstairs.

It is a tough room, filled with some of the most severely injured or ill patients at
GF
Strong. A middle-aged woman sitting near the door steadfastly refuses the small bites of applesauce a nurse holds to her lips.

“Just one bite, Ms. Prinze,” the nurse repeats over and over. “Just one bite.”

In the middle of the room, another gray-haired woman feeds a young man—her son?—wiping his lips as he struggles to keep the food inside his mouth. Simon and I take a spot in the far back corner, angling his chair so that he can look out the window at the green tops of the trees lining Laurel Street. I open the foil lids of his milk, juice, and pudding cups and move the bundle of cutlery within reach of his right hand.