Fallen: A Trauma, a Marriage, and the Transformative Power of Music (13 page)

It was an age deeply skeptical of inherited privilege and divine authority, and the egalitarian and democratic sentiments of the philosophers, artists, and revolutionaries were reflected in anatomists’ rejection of the idea that discrete functions can be located in specific, hierarchical structures within the brain. Instead, anatomists embraced the Doctrine of Equipotentiality, or the notion that there is an equal distribution of function throughout the brain. In this Enlightenment framework, the corpus callosum, the broad band of white matter that internally connects the two hemispheres of the cerebrum, took on a central role, replacing the ventricles or the pineal gland as the potential seat of the soul.

Giovanni Lancisi, an Italian papal physician, writes in 1712: “It is quite clear that the part formed by the weaving together of innumerable nerves is both unique and situated in the middle: and so it can be said it is like a common marketplace of the senses, in which the external impressions of the nerves meet. But we must not think of it merely as a storehouse for receiving the movements of the structure: we must locate in it the seat of the soul, which imagines, deliberates and judges.”

More recently, in the age of the Internet and globalization—a modern epoch in which society is, as it was during the so-called Age of Reason, stitched together with threads of communication and information—there has a been a return to long out-of-fashion ideas about the brain and its potential, ideas that trace their lineage back to the Enlightenment notion of equipotentiality. With the introduction of the technology used in
MRI
s and other various advanced brain scans has come a revolution—not unlike the one that followed the invention of both telescope and microscope—in our understanding of the brain. In the last twenty-odd years we have come closer, from a biomechanical perspective, to discovering what thought is than in all the rest of human history.

As I sit at Simon’s bedside through the long night, teetering on the waking side of consciousness, eyes puffy with the proximity of my dream-thoughts, a blue blanket warmed by the nurses draped over my shoulders, I ask these questions, not as a curious and disciplined scientist but as an overgrown child stunned by trauma into a state that hovers on the peripheries of everyday reality. It is magical thinking, a type of desperate whimsy, that questions where the seat of the soul resides: in the ventricles, the pineal gland, the corpus callosum, or an articulate and sonorous right hand? It is magical thinking that cultivates the intuition that the questions may be as important as the answers. That, perhaps, in some small degree, how the questions are framed and articulated will in turn shape and direct the answers. Despite their unscientific foundation, my conclusions and resolve are firm: The question is no longer “Can Simon’s thoughts continue to heal?” The question is “How? How will Simon continue to heal?”

AUGUST 2, DAY 12

I SPEND ANOTHER
long night in the
ICU
, leaving late in the evening for my midnight nap and returning early, unwilling to be away from Simon for too long. But unlike last night, tonight I worry that my presence is disruptive. When I am close, his right hand is busy, wanting to interact, but his communications are not as clear as they were. There is a desperation in his squeezes, as if he is shouting,
I’m in here! I’m in here!
to whatever question I might ask.

During the nurses’ shift change, I return to the hotel and eat an egg with triangles of buttered toast in the quiet restaurant. I call my mother, who has returned to Powell River with my brother and his family, and give her an update. When I return to the
ICU
, a new nurse, one I haven’t met yet, explains that Simon is to be transferred to the Step-Down Unit of the spinal cord ward.

“What? Why spinal cord?” I ask. “Wouldn’t it make more sense for him to go to the ward for patients with head injuries?”

She looks at me as if I, too, am demented. “This is a good thing, you know.”

None of us have spoken with a doctor since the trach was performed. All of Simon’s vital acronyms—his
ICP
, his
CPP
—have stabilized in the forty-eight hours since the trach, but none of us know what to expect next. Dr. Griesdale is off the
ICU
rotation, and I don’t even know whom to ask for. “Before he’s moved, can I speak with a doctor?”

“I don’t know. They don’t come at my beck and call.” She is clearly irritated. “This is a good thing. I don’t know what you are so worried about.”

Everything, I want to say, but don’t. Right now there is fear and danger in everything. I retreat from her crotchety scowls to go find reinforcements. A short while later, I return with Emily, Marc, and Lorna, only to find that Simon is being prepared by another nurse and two aides for the transfer. This is happening. Simon is being wheeled out of the fluorescent womb of the
ICU
into the outside world, which has suddenly become a very dangerous place. How can Simon possibly be ready to leave the
ICU
? His fleeting moments of seeming lucidity are less, not more, stable than they were a few days ago. He cannot speak or move except for his determined right hand. He has no control over his bowel or bladder, his right eye is not opening, and his left hand is not moving. A wide tube in the hole in his neck continues to pump oxygen into his body. He isn’t ready. None of us are ready.

SIMON’S NEW ROOM
is private, extremely large, and immediately adjacent to the nursing station at the end of a long hallway in the spine ward. It is referred to as a Step-Down room, one where there is less focused attention by the nursing staff than in the
ICU
but more than in the regular ward. The room has a bank of windows looking out onto the Vancouver skyline, a private washroom, and, best of all, one of the big armchairs that unfolds into a cot. During the transfer, Simon develops a low-grade fever and a sharp crackle in his chest. At regular intervals, the nurses take a long suction tube, insert it into his trach hole, and vacuum out the phlegm from his lungs, an act of incredible violence—necessary and unintended violence, of course, but nonetheless violence that causes him obvious pain.

My good friend Mary, returned from a camping trip, is at the hospital along with our neighbor and friend Baelay. Baelay is as short and round as Mary is tall and broad, but they both have exceptionally strong and loving arms, and shoulders safe to lean on. They sit in Sassafras through the long day, simply there for whichever one of us needs them. Sully arrives too after his work day on the coast. He has been at the hospital almost daily, available around the clock for anything: a conversation, a drive to the ferry, a shopping list. In the evening, Marc and Lorna return to North Vancouver, Emily takes the evening shift with Simon, and Baelay, Mary, and Sully take me out for dinner at an Indian restaurant a few blocks from the hospital. When the waitress delivers my mango lassi, I burst into large hiccupping sobs.

“That’s it,” Mary says. “That’s good. You have to let it out.”

When I return to the hospital, Emily is sitting on the cot chair waiting for me. I am lighter without the weight of all those tears, but Emily is dark-eyed and hard-jawed, taut with anger and fear. She dozed off earlier, she explains, but woke just in time to see two nurses repositioning Simon on his left side.

“What are you doing?” Emily asked.

“He needs to be repositioned,” one of the nurses began, launching into an explanation of pressure sores.

“No, no, no,” Emily interjected, pointing to the sign posted above his bed. “He has no left-side bone flap.”

Simon was hastily returned to his previous position. If he were to be rolled to his left side for even a short amount of time, his
ICP
could increase dangerously as the still-swollen left hemisphere comes into greater contact with the bony ridges of the skull opening.

“Keep one eye open,” Emily says, kissing my cheek before she leaves.

One eye. Two eyes. I won’t sleep, I know it.

Dangerous. Everything is dangerous.

AUGUST 3, DAY 13

First morning in your new room. I spent the night, as usual, but this time I actually had a chair/cot that I pulled beside your bed. Sunrise was beautiful—glittering Vancouver, pink-rimmed mountains, seagulls carving up the blue air—a real penthouse view. It was quiet and we lay together, side by side, for the first time in almost two weeks.

Earlier in the night, you were exploring your skull with your right hand. I explained about the bone flap. You rubbed behind my ear. You signaled for a glass of water. I didn’t understand the gesture at first, until, when I was uncorking my bottle, you made the gesture with greater determination and I finally figured it out as I took a big gulp of water. I felt terrible not being able to give you a sip. I moistened your lips and explained that you are not able to swallow anything yet. But you are parched, a wild man in a desert. Your mouth and lips are so dry, and I can imagine how sore your throat is. There is likely a strep infection. You woke this morning with a fever and full-blown pneumonia, coughing huge chunks of lung goo into the trach tube. Oh babe, I want so much to make this all stop for you.

At lunchtime, after I left to shower at the hotel room, the nurses sat you up in that horrible bed-chair contraption. Your parents were told you were to be upright for about an hour, but your dad thought it was closer to two hours before you were laid back into bed.

You are not paying attention to your left side, and your right eye opens only a sliver. I feel you are more peaceful but less communicative. You squeeze my hand consistently, regardless of what I say. When I returned to the hospital and you were up in the bed-chair, I saw your gaze scanning the room, but I didn’t feel like you were really seeing or hearing me.

IT IS IMPORTANT
to get Simon up into the bed-chair as soon and for as long as possible to prevent the formation of blood clots. I know this, but still I hate the contraption. The nurses dress Simon in a blue gown and white paper shorts and white stockings called
TED
s meant to increase blood circulation. They strap him in and tilt him upright. Here, his head and torso list to the left and he recedes to a distant, unreachable place. His mouth hangs open and his eyes half close. His beard has grown in thick and suddenly full of gray, and the remaining hair on his half-shaved head is long and straggly. Here, he is most un-Simon; with the swelling and listlessness and unfocused gaze and the crazy beard and redneck hair, he bears a frightening resemblance to the pictures of serial murderer Robert Pickton in the recent news.

Marc and Lorna remain throughout the day. Lorna sings Simon the story of his life since the moment of his conception, events unfolding in an invented and rambling choir-girl melody. Marc sings too. Sitting beside Simon, he holds his hand and sings softly in his ear. He sings the catalog of Paradis songs, the ones that are drunkenly hollered at large family gatherings and the ones that he and Simon played together sitting in their sky-blue living room on Sunday mornings. Bob Dylan, the Band, J. J. Cale, Little Feat. Music Simon has previously described as his uterine soundtrack or, more simply, Church.

I DISCOVER A
quiet bookend of time at sunset and sunrise in the busyness of Step-Down. I write in my journal then, writing directly to Simon, an imitation of the whispered conversations that we might have back at home snuggled up in bed:
Eli is having a rough time. My mother is driving me crazy. Where will I get money for everything we have to do? I’m worried about you.

These are the times that Simon is most present too. These are the times I am most clearly in contact with his consciousness, expressed entirely by his right hand. These are the times I
know
he is there. It has become more difficult to sustain that knowledge through the days. Every time Simon slips into a semi-lucid state, it is as if he is waking up for the first time; there seems to be no accumulation of consciousness from one waking moment to the next. The nurses have perfected a noncommittal nod when I explain the “conversations” we have. In moments of doubt and despair, I wrestle with the fear that Simon is here with us but trapped within his mind, a bright spark adrift in a dark, internal sea. I wrestle with the fear that my need to speak with him is so great that I have imagined meaning in the movement of his right hand where none exists.

But these moments of doubt are brief. I can differentiate when his eyes are open and he is there from the times his eyes are open and he is not. Healing takes time, I tell him in those lucid moments. I tell myself the same thing: healing takes time.

Bit by bit I start to sing too. It is depressing to me that I have so little to offer; there are no fully realized songs on my tongue. My usually good memory fails me mid-verse, and a door closes on both lyric and melody. Nevertheless, I start to sing certain verses or even phrases on repeat: the middle section of Taj Mahal’s “She Caught the Katy,” Jeff Tweedy’s version of the first verse of Woody Guthrie’s “California Stars,” Gram Parsons’s “One Hundred Years from Now,” the first song our family band, Farm Team (me on bass, Eli on drums, and Simon, of course, on guitar) learned to play together. I sing, but my voice is full of warbly pockets of air and uncertain notes. I worry Simon will be appalled at the quality of music he is forced to listen to.

“I’m sorry,” I say. “I know it’s terrible, Beau. I need your voice to lean on.”

INSIDE ME, A
deep well of panic forms. The farther away from the
ICU
we are and the longer Simon stays sleepy, the deeper that well gets. It is there all the time, and the only thing I can do when it threatens to open up beneath me is think of water. Cool blue water, surrounded by ferny banks and dappled with sunlight spilling through leaves and glinting off the mica in the rocks. I imagine diving into water; I imagine swimming in water; I imagine
being
water. Soft and yielding but containing an elemental strength.