Fallen: A Trauma, a Marriage, and the Transformative Power of Music (32 page)

MIDNIGHT TONIGHT MARKS
twenty-one years from the day we read our handwritten vows to one another, and we spend it overnight in Vancouver. Simon is at Lions Gate Hospital for a surgical procedure to have Botox injected into his bladder. (“I’ll have the youngest looking bladder in town,” Simon joked with our family doctor. “It will look as good as Cher’s face.”) The procedure will help him manage his daily catheterizations and ongoing urinary tract infections. While it’s not exactly the anniversary trip to Spain we promised ourselves for years, somehow that doesn’t diminish our sense of celebration. More than twenty years of marriage: it is an accomplishment to be proud of.

Our sex life is not as straightforward as it once was but, thankfully, it is now nobody’s business but our own. While both Simon and I encourage and support more open dialogue around the issue of sexuality and disability, it is also a relief to not have our most intimate selves up for regular discussions with medical professionals or family members. The reality for most couples married twenty years or more is that an evolving love life needs continued commitment to exploration and reinvention. This is maybe more critically true for Simon and me than for most. But the commitment is there, as is the attraction, and we have finally reached a point, post-accident, where we can both have a little fun in figuring out this work-in-progress part of our life.

IN NOVEMBER, JOE
and Simon are booked as an acoustic duo for a weekly gig every Thursday at a local restaurant. With the promise of steady work, Simon decides it is time to invest in a good-quality acoustic guitar and finds the perfect fit: a 2009 Santa Cruz.

With this new acoustic duo booking, his guitar students, his songwriting sessions, and the monthly band gig up at Garden Bay, Simon is busy. I am busy too. As the days shorten and the year winds down, I take my second anatomy exam, midway through the year-and-a-half-long Pilates program. I gain fifteen pounds of muscle as the Pilates work continues to help me build and maintain the strength I need to support myself supporting Simon, and I no longer suffer from the low back pain that so often plagued me before and after his accident.

This last six months has marked another transition: both of us have taken on a little more work and responsibility outside of the home. We are no longer exclusively preoccupied with health-related issues and can enjoy the jolts of satisfaction for work well executed, the trivial irritations of being slightly overwhelmed, and the deep pleasure of rest after a day of busyness.

I return home one night after a day of such busyness: an early morning at the Pilates studio, teaching and taking class, rushing home to help Simon midday, and then an afternoon of chores: shopping, recycling, and picking up Simon’s prescriptions. It is not yet five o’clock when I get home, but the thin winter light has already leaked from the sky. Simon is in his office chatting on Facebook. Even though we eat early, usually around this time late afternoon, no food prep has been started. I am starving.

“Hey,” he says. “What are we having for dinner?”

“Are you kidding me?” I am furious, the kind of furious that only happens when your blood sugar is really low. “What are
you
making? Why haven’t
you
started?”

“You’re right. I totally flaked,” he says, wheeling into the kitchen. “What do you want? Scrambled eggs? Breakfast for dinner?”

I don’t really want eggs, but Simon’s cooking repertoire is limited, so I grunt in a conditional agreement.

“You’re mad,” Simon says. He pulls a carton of eggs from the fridge and sprays some oil in the cast-iron frying pan. “I’m sorry.”

“I
am
mad,” I say, starting to smile. “Hungry-mad.”

“What’s so funny?” he asks as he cracks the eggs.

“I dreamed about this. Being mad. When you were in
ICU
. I prayed for the day when I could be righteously pissed off at you.”

“Righteously pissed? C’mon, Stan. I’m making you eggs.”

“Learn to cook. I need more options than eggs or spaghetti.”

“Fine. I will. Now zip it and put some bread in the toaster.”

The next day Simon calls me into his office. “Listen to this,” he says. He opens a link sent to us by my good friend, and one of Simon’s songwriting collaborators, Rachel Rose. It is a live performance by writer and musician Dan Bern, singing about an imagined conversation with God. “Listen.” Simon’s voice breaks. “It is astounding.”

Like the Dylan song “I Was Young When I Left Home” a few years earlier, “God Said No” hits Simon with the emotional weight of a freight train. For three days Simon wrestles with this song, singing and weeping and singing. Unlike the first time, his tears don’t frighten me now. Each time he tackles the song, each time it defeats him, he, and his performance, grow more powerful.

“It is a vehicle to navigate regret,” he explains, though the song needs no explanation. “What if I hadn’t gone into work that day? What if I hadn’t stepped back on that scaffold? What if I could go back in time? Do things differently. What if, what if, what if.”

The weekly gigs at an Italian restaurant, the Old Boot Eatery, have become more and more popular, and week after week Joe and Simon play to a full house. People line up for the intoxicating combination of wine, crusty squares of bruschetta, spicy homemade sausage, abundant plates of pasta, and good music. The following Thursday, as we drive into town, Simon announces his plan to play “God Said No” live. “I’m a little worried, though,” he says. “It might make me cry.”

“Cry or not cry,” I say, “I think it will be incredible.”

He waits until late in the second set, when the crowd has thinned out. Although it is his first time hearing the song, Joe strums along as Simon’s voice cuts through the dining-room chatter, and the room falls absolutely silent. Simon makes it through the difficult third verse without choking up, but I notice the woman at the table beside me freely wiping away tears. When he finishes, a man at the back of the room gets to his feet to start the round of applause. My whole body is shaking.

“Whoa,” Joe leans in to Simon. “That’s quite a song.”

PERIODS OF PROGRESS
interspersed with “plateau periods” where nothing much changes: that’s how Sean, Simon’s physiotherapist, described the rehabilitation process to me and Simon in the early days at
GF
Strong. Over time, he explained, the plateaus would become longer and longer, while the progress would be less remarkable or even noticeable. Still, four and a half years post-accident, progress continues to occur.

Most recently, Simon has decided he will no longer perform with sheet music and pages of lyrics. Before his accident, Simon would never have performed with this type of memory aid but, over the last year, during his weekly gig on Thursday nights, it has proved useful, allowing him to play and sing for three or more hours a night without unduly worrying about forgetting lyrics. But now Simon believes that this “compensation” is hindering his ability to fully emote and perform a song. “If I can’t remember the lyrics,” he says, “I won’t play it.” To challenge himself, he learns an intricate gypsy jazz piece entitled “Bistro Fada.” It is a song that requires fast, precise, and fluid execution, and it is a significant workout for both his memory and his still sometimes stiff and slow-moving left hand. It is a huge success when he and Joe perform it at the restaurant. Steve, the chef, cheers loudly in the kitchen. Later, he congratulates Joe and Simon. “It was so good, boys,” he says, “I kept expecting tables of people to stand up and start smashing dishes!”

There has, however, been no change in Simon’s spinal cord injury. Aside from a small increase in spasticity in his left leg and the fluctuations in pain levels, things are as they were the day Simon arrived at
GF
Strong. In the first year post-rehab Simon would often randomly ask the various medical professionals we encountered what insights they had into cutting-edge research for people with spinal cord injuries. Robotics, one surgeon told us, would likely outpace any biological advances. It was a frustrating answer for Simon, as it implied that the primary goal of recovery was walking. Although it was difficult to accept the prospect of never walking again, Simon has reconciled himself to the continuing presence of a wheelchair in his life and he is quick to assert that walking is at least fourth or fifth on his list of recovery priorities.

In that first year out of rehab he dismissed my suggestion we investigate post-rehab programs like Project Walk, an intensive exercise-based program in Carlsbad, California, whose mission, whatever the level of injury, is to optimize the potential for functional movement. Project Walk began with the idea that if you restrict a normally ambulating person in a wheelchair, give them massive amounts of drugs to dampen the nervous system, and keep them sedentary, in six months to a year they won’t be able to walk. This, of course, would be doubly, triply, true of someone with an actual spinal cord injury. The project’s basic premise—that an intense exercise program, while not having the power to fully restore sensation and movement, would offer a better picture for the potential for healing—appealed to me. Intense exercise, I proposed to Simon, might also help alleviate pain and would certainly enhance overall health and quality of life.

He wasn’t sold. Even the name—Project Walk—irritated and stressed him out. “We don’t have the funding for something like that,” he argued. “And plus, I have enough on my plate between health issues and getting the left hand working.” He was adamant that he didn’t want to pursue this type of program.

So, four years later, when I casually assert that I believe he will be up and ambulating one day, I am surprised that he agrees.

We are in Vancouver, driving back to our Holiday Inn room from a gig in a wholly inaccessible venue. Arriving for sound check, we were shocked to find that the “not a problem few stairs leading up to the club” were actually not a few stairs but five steep, long
flights
of stairs. A trio of strong men carried Simon up and down, and Simon is a little giddy at having navigated such an utterly inaccessible environment.

“It makes a whole lot of things feel more possible, you know?”

“Yeah,” I say. “But, honestly, I don’t know if it will always be necessary to have someone carry you up those kind of steps. I feel like in three to five years’ time there is a good chance you’ll be up and ambulating.”

“I think you might be right,” he says. “We’ll see.”

Reflecting on our brief conversation, I am surprised that this doesn’t feel like a momentous breakthrough or epiphany. Somehow we have absorbed the rapid technological advances made both in the study of the central nervous system and in robotics over the past few years. Six months ago I don’t think I would have made such a bold statement; nor do I think Simon would have accepted it. Now it simply feels like an inevitable fact.

Some of the most promising research is being done by systems neurophysiologist Miguel Nicolelis. He is picking up the baton in what he terms a long and noble relay race, a journey from the big bang to the human brain and then on to some place and time in the not so distant future that hovers at the cusp of our most speculative imaginings. Nicolelis is a researcher at Duke University whose work investigates the physiological principles that underlie the operation of the vast neural circuitry in the brain. Neural circuits, Nicolelis reminds us in the opening of his book
Beyond Boundaries,
are formed by nerve fibers that in turn are formed by the brain’s hundreds of billions of cells. “Such intricate brain networks,” he writes, “which dwarf by many orders of magnitude the complexity and connectivity of any electrical, computational, or machine grid ever assembled by humans, allow each individual brain cell, known as a neuron, to establish direct contact and communicate with hundreds or even thousands of its peers... It is through these immensely interconnected and highly dynamic cellular networks, which are known rather prosaically as neural circuits, that the brain goes about its main business: the production of a multiple of specialized behaviors that collectively define what we usually, and proudly, refer to as ‘human nature.’”

Nicolelis sees both the big and the microscopic picture, both the drop of water and the sea, but in the more than two-hundred-year-old battle in neuroscience between localizationists, who believe that distinct brain functions emanate from specialized and segregated areas of the nervous system, and distributionists, who believe that the human brain utilizes populations of multitasking neurons, distributed across multiple locations, to execute specific tasks, Nicolelis firmly situates himself in the latter, more radical camp. But even here, among like-minded maverick thinkers, his vision is so bold and expansive that it is a little frightening. Where others have seen the enigmatic working of the brain’s neural circuitry as a highly resourceful and ever-changing map, Nicolelis sees the fine-tuned dynamic choreography of a world-class soccer team or a hunting pack of lions. And he hears the music of the brain. There is the metaphorical song that, to Nicolelis, sounds an awful lot like the nationwide peaceful protest he experienced in April 1984 in Brazil, when a choir of more than a million people demanded fair elections and, through its collective power, was far more influential than any single voice could ever be. But there is also a literal song: in his Duke University research lab, Nicolelis has recorded the sound—the music—produced by ensembles of activated neurons, and he works as a transcriber, an interpreter, of these symphonies of thought composed by the brain. In
Beyond Boundaries
he writes:

What principles guide the composition and conduction of these neural symphonies? After more than two decades delving into the workings of neural circuits, I have found myself looking for those principles both outside the brain, beyond the boundaries that have constrained our biological evolution out of humble beginnings in stardust, as well as deep inside the central nervous system, trying to identify and give voice to the
brain’s own point of view
. Here I propose that, like the universe that fascinates us so much, the human brain is a relativistic sculptor; a skillful modeler that fuses neuronal space and time into an organic continuum responsible for creating all that we see and feel as reality, including our very sense of being... in the next decades, by combining such a relativistic view of the brain with our growing technological ability to listen and decode even larger and more complex neural symphonies, neuroscience will eventually push human reach way beyond the current constraints imposed by our fragile primate bodies and sense of self.