Fallen: A Trauma, a Marriage, and the Transformative Power of Music (33 page)

Nicolelis can make such claims because of the experiments he has conducted in his lab. By translating the neuronal music into complex algorithms, he has created a revolutionary neurophysiological paradigm, which he has named the
brain-machine interface,
or
BMI
. Through the use of a
BMI
, Nicolelis was able to successfully teach monkeys to voluntarily control the movements of various devices—a computer cursor, a robotic arm or leg—located either close to or very distant from them, using only their minds. No hands, just thought! As Nicolelis notes in
Beyond Boundaries,
the success of these experiments “unleashes a vast array of possibilities for the brain and the body that could, in the long run, completely change the way we go about our lives.”

Nicolelis’s grand and eminently humane vision of the capacity of the human brain has led him to the verge of developing an exoskeleton to be worn by those who are, either through trauma or disease, paralyzed. Controlled by a small computer chip that is powered by, and inserted into, the raw electrical tissue of the brain, these exoskeletons have the potential to restore both sensation and mobility to those who would otherwise be confined to a sedentary life in a wheelchair. There is a sea change happening in our understanding of the central nervous system, and Simon and I, despite our own small-scale daily difficulties, are excited that the possibility of regaining mobility after a severe spinal cord injury is far less remote today than it was even four years ago.

MARCH 2013

THIS IS THE
year Simon and I decide to tackle air travel, our most likely destination being his parents’ farmhouse in Quebec. But the logistics of air travel continually worry Simon into an aggravated fury.

“No accessible washrooms on the flight,” he rants. “I won’t even have my wheelchair with me. What if they lose my luggage with all my gear and meds? I’ve been to Quebec a thousand times. I don’t need to go again.”

“Is there any place you’ve always wanted to go but never have that would, in some small way, make the difficulties of air travel worthwhile?”

He thinks for a moment, scratching the silvery stubble on his chin. “New Orleans,” he says. “I always wanted to go to New Orleans.”

For Marc’s birthday, Lorna surprised him with tickets to New Orleans: eight days in mid-March nestled between the high tourist traffic times of Mardi Gras and the Jazz Festival. This particular March she celebrates her sixty-fifth birthday, along with Emily’s forty-fifth and Eli’s twenty-first, and after a quick consultation we all decide there is no better way to celebrate all these birthdays, in addition to Simon’s first foray into air travel, than with a family adventure. So we buy tickets and make plans, and on a Tuesday morning, after much list making, we meet Eli at the Vancouver airport, Emily and Sarah head to international departures at Pearson in Toronto, and Marc and Lorna do the same at Dorval. Late that evening we all meet up in the lobby of the Hotel Monteleone on Royal Street in the heart of the French Quarter. The city, in spring, is draped with garlands of purple and white wisteria.

The vacation is not without its alarming moments—Lorna is aghast when a cockroach the size of a small puppy darts out from beneath her restaurant chair; Eli has a gun pointed at him on Bourbon Street; and, on the way home, the airline temporarily loses Simon’s wheelchair in Fort Worth, Texas—but these moments are fleeting and we survive unscathed. We spend our days listening to the buskers who line Royal Street, buying ink prints from the vendors in Jackson Square, and lounging in stone courtyard cafés eating po-boys and oysters on the half-shell. At night we bar-hop along Frenchmen Street, listening to the rich Creole mix of blues, funk, jazz, and Dixieland bands. From the banks of the Mississippi we watch the steamboats pass by, Simon playing guitar and all of us singing Jesse Winchester’s “Mississippi You’re on My Mind.” After a week, a deep family bond has been forged with this beautifully cacophonous city. Although the story of New Orleans is complex and reaches far back into history, we all feel a symbolic, if superficial, kinship. Like us, New Orleans recognizes that trauma and pain are powerful teachers of how to live in the present moment. Our Horses, those running threads that weave through our life and knit us together, the fibers that allow us to find the unexpected reserves of strength and flexibility necessary to navigate, even celebrate, life’s inherent chaos and uncertainty—these Horses are ones we find galloping through cobblestone alleyways and holding up traffic on Canal Street. Our Horses: the drive to create more than you consume and a deep and abiding love of good food, good friends, and good family. And good music. Always good music.

JULY 22, 2013

IT IS FIVE
years since the day of Simon’s accident. “Anniversary” isn’t exactly the right word, implying, as it does, celebration. Still, five years feels important, and we need in some small way to honor Simon’s courage and resilience and to mark this important milestone in our journey together. We sit on our porch and nosh our way through oversized gourmet takeout burgers and generous portions of our good friend Amy’s homemade vanilla ice cream, and then Simon pulls out the new Santa Cruz acoustic.

We have continued to sing regularly. As my voice grows stronger, our repertoire expands and Simon becomes more and more demanding, challenging me to hold notes longer or to sing vocal lines separate from his. Some days it works better than others. But today there will be no holding back. “Ready?” he asks and launches into David Bowie’s “Five Years,” the song we have been singing together since we were teenagers. We continue with the rest of the
Ziggy Stardust
album: “Moonage Daydream,” “Starman,” “Suffragette City,” even a poorly remembered version of “Rock ’n’ Roll Suicide.” David Bowie leads to T. Rex leads to the Stones leads, of course, back to the Beatles and raucous versions of “Twist and Shout,” “Helter Skelter,” and “Why Don’t We Do It in the Road?” Sexy songs: jubilant and defiant and playful. It is true that the last five years have felt like an entire lifetime, but it is also equally true that, here, now, as we sing at the top of our lungs at the kitchen table, it doesn’t feel so long ago that we were sixteen and on lunch break, dancing around the stacks of albums that lined Simon’s sun-drenched sky-blue living room.

Five days later, back on the porch, the dog and I lie on the warm cedar planks in the mid-afternoon sun, the air soft and fragrant with honeysuckle, rose, and the jasmine-like scent that wafts up from the row of Daphne bushes I planted last month. I eavesdrop, as I so often do, on Joe and Simon playing music. Their music today, of all days, counts as a minor miracle to me.

This time five years ago, two things were happening. Simon was being prepped for the controversial surgery to stabilize his spine—controversial because the consensus of the gathered doctors was that there was almost no chance he would survive his injuries. And Joe was on stage at the Islands Folk Festival announcing to the audience that the Precious Littles were a man short, that Simon, his good friend, musical cohort, and producer/guitar player, couldn’t be there that day. Today our living room is filled with recording gear, and they are hard at work recording a new
CD
titled, fittingly,
Good Road Home,
a collection comprising both Joe’s and Simon’s original songs, songs created in the wake of Si’s accident and inspired by their musical sojourn together.

Inside, Simon makes a loud foghorn noise, and he, Joe, and the engineer, David, laugh loudly as they move from living room to kitchen, where we have laid out a spread of finger foods: squares of sharp cheddar, slices of cantaloupe, a bowl of the lime saffron cashews both Simon and Joe love. I’ve missed both lead-up and punch line, but I imagine Simon is teasing Joe about the glorious honking bass harmonica track Joe played on “Old Fashioned Morphine” earlier that day.

“Don’t worry, Joe,” Simon says. “I’m just pulling your ponytail. You know I love ya, man.”

On the porch, the dog, Paloma, gets up and moves into the shade, settling down with a long, expressive sigh. I am reminded suddenly of Eli’s question when I announced I was writing a nonfiction account of Simon’s accident: How will it end?

Eli is in Victoria, the first year he hasn’t returned home for summer vacation. These are the early days of his being truly independent, an adult, something I know is both terrifying and exhilarating for him. The recording of this
CD
—the sending of barely weaned songs out into the big wide world—is the start of something new too. In this moment I am content to simply know that our story isn’t over. That there is still time yet to listen for music heard so deeply it is barely heard at all. And to know that to that song there is no ending. Only new beginnings.

Brief break over, Joe and Simon return to the living room to tackle the next song: “God Said No.” It’s one of two covers that has made the list alongside their originals.

From the porch I listen as Simon sings, his voice no longer full of ragged wind and rain but deep and resonant. Powerful.
God said Time, Time belongs to me; Time’s my secret weapon, my final advantage. God turned away from the edge of town and I knew I was beaten and that now was all I had. God said no.

Joe and Simon exhale as the final note fades.

“Playback? Do you want to listen to it?” David asks after a moment of silence. “Or do you want to try that one again?”

“No, I’m good,” Simon says. “Let’s move on.”

IT IS IMPORTANT
to acknowledge that when telling a story that details a particularly vivid timeframe in the life of a family, there may be multiple versions of shared events. This book is my version. As such, it privileges my feelings and perspective, and because I both lived and wrote it with Simon’s constant influence, input, and insight, it tells
our
story—his and mine. Our family fully supports the telling of this story; however, that does not mean there were not some differing opinions about the interpretation or representation of events. Where these conflicts were particularly intense (for example, the wisdom of the decision to give consent for the tracheostomy was long debated), I have attempted to widen my lens to include outside perspectives or at least allude to their existence.

Simon, being Simon, has often expressed something between gratitude and relief that it was he who fell and not someone else—Eli, say, or me. Still, he has always been acutely aware that his accident did not happen to him alone and that the rippling aftershock of his fall spread out among his friends and family, affecting them in profound but less visible and easily comprehensible ways. All of these people formed a chorus of voices in my mind as I wrote this memoir, and while, given the demands of the genre, it would neither be possible nor appropriate for me to have attempted to tell all their stories, those stories are critically important to me and Simon. All these people’s communal love and support has buoyed, nourished, and nurtured us in countless ways; we are where we are today because of all of these voices.

The intersection of stories is most complex with our son, Eli. He is an intrinsic part of our story, and at the same time he is on the precipice of forging his own life, as his own person. During Simon’s long recovery, Eli has often been very much on his own, navigating a world of “normal” experiences—winning soccer tournaments, writing exams, experiencing first love, applying for university, getting (and hating) a minimum-wage job—while still experiencing the internal fracturing of our nuclear family and everything, really, he had known and relied on as daily life. As much as the early days of rehab at
GF
Strong and interim housing were slow-going for Simon and me, they gave us time to both grieve and integrate the accident into our life. But it is hard, almost impossible, for a sixteen-year-old to know that the only way to get through sorrow is through the sorrow itself. Too much is happening that is good and terrifying, new and exciting, to slow down for sorrow. It is impossible for this juxtaposition—the internal disharmony of the predictable hopes and worries of a teenager battling the too-soon grief of an adult—not to create conflict, but although it has been challenging at times, Eli continues to work at navigating the perilous emotional place he occasional finds himself in. At twenty-two, he is both still the cornerstone of our story and his own man, writing his own life story with his characteristic conviction, commitment to communication, and an open, generous, and courageous heart.

At my request, Joe Stanton, Gerry Millar, and Marc and (especially) Lorna Paradis wrote extensively for me about their experience of Simon’s accident and the years that followed, greatly widening the scope of my view and providing insights I would not have had on my own. Emily Paradis gave me access to her journal entries and private emails, one of which appears in the text and all of which were written from the singular viewpoint of a person whose great intelligence is matched by her deep and abiding compassion. There are more ways than I can list here that the text of
Fallen
, as well as our family, has benefited from Emily’s open-minded input. Sister-in-love indeed! All of the abovementioned are gifted writers and storytellers in their own right, and I am honored that they entrusted me with their contributions.

Again, this is especially true for Lorna’s contribution. Given our very different personalities (not to mention the social roles of mother and daughter-in-law that we occupy), Lorna and I occasionally had perspectives that clashed or differed. Despite these conflicts, Lorna has unceasingly supported me in my writing of this memoir. And for me, both the act of writing and the attempt to widen my perspective have only deepened my respect, admiration, and love for Lorna, and for our entire extended family.

A great number of important people, facts, and events did not make it into this memoir. Emily’s wife, Sarah Fowlie, and my brother, Rob Stanley, figure only as peripheral characters, largely because they could not be as physically present in our lives in British Columbia as other members of the family. In real life they are both superstars. Sarah, foundational source of comfort, nourishment, and wicked humor; Rob, who always asks for very little and gives a great deal—even from a distance these two are central figures in the family support system we rely so heavily upon.