Fallen: A Trauma, a Marriage, and the Transformative Power of Music (31 page)

“I don’t think I’m depressed,” Simon says. “It can’t really be depression when you are reacting to things that genuinely suck ass. I’m not depressed, I’m low. I’m blah. You know—
blah,
depression’s distant and more ironic cousin.”

It is costly to us, the time Simon is on vancomycin. We are more withdrawn and have little community interaction. The amount of time spent on health-related issues precludes any other activities. Even attending our one established weekly outing—Eli’s soccer games—is not always possible, and weeks go by when the only people we see are paid medical staff. In October, I start teaching again at our local Capilano University campus. It is only one two-hour class for six weeks, but, although I look forward to each class, it becomes increasingly stressful to leave the house.

Ever since his time at
GF
Strong, Simon has experienced a certain level of neuropathic pain. It is, for the most part, not achy and consistent but rather a vivid, searing jolt of pain. “Like someone has hooked battery cables to my hips,” Simon says, “and they’re shocking me.” Now, three months into the vancomycin regime, his pain level suddenly skyrockets. It comes in big, continuous waves and leaves him howling, gripping a table, unable to move his wheelchair. It is terrible when he is sitting but worse when he lies down, and it goes on for hours and hours.

“It’s like living with a wolf with its leg caught in a trap,” Eli says one morning after a particularly bad night. I call the department coordinator at Capilano and tell her I have to cancel my proposed classes for the winter and spring. It is too soon for me to return to work.

There are more tests and
X
-rays, but no explanation for this increase in pain is found. Our
GP
prescribes a variety of medications, some of which significantly affect Simon’s level of consciousness, none of which are totally effective against the pain. So he is dozy, sometimes to the point of hallucinating, but still in pain. One night he wakes me up, insisting I go turn off his computer.

“Don’t worry,” I tell him. “It’s off.”

“No, no,” he says. “The email hits, they’re jolting my hips.”

I get up and assure him his computer’s off. I put on the kettle, resigned to another sleepless night. I make tea and think how the days and weeks of dealing with the vancomycin regime are transforming us all. Eli, normally a healthy and active person, has been beset with sore throats, fevers, and stomach upsets. He is anxious and short-tempered, as am I. I worry constantly that Simon is one fever away from returning to the
ICU
. It is a life-and-death worry, not unlike what I felt when he was actually in the
ICU
, the kind of worry that, at some level, we are all familiar with but that is not meant to be sustained through the daily activities of shopping, cooking, cleaning, working. And Simon, fearless Simon, is afraid of the pain. When it starts up, he physically cowers. It breaks my heart. It is amazing, I think, how he could wake up from the massive trauma of a central nervous system injury and still be himself. All of us, in that moment of trauma, and despite the shock, were all still recognizable: Kara, Eli, Simon. It is the erosive forces of chronic pain, worry, and infection that threaten to turn us into something we were never meant to become.

IN THE NEW
year Joe Stanton and the bass player, Gerry Millar, come to the house for weekly rehearsals. Joe has been asked to play an original song at the Olympic Torch Relay concert in February, and, if Simon feels ready, he will join Joe and Gerry to form a Precious Littles trio for the gig. The PICC line has made it uncomfortable for Simon to play guitar, and he has practiced very little over the past six months. He is self-conscious about his abilities on both his electric and acoustic guitars and so chooses an instrument he rarely played before his accident, his metal resonator guitar. In between vancomycin drips and hospital trips, he begins to work on his parts.

Things have not changed dramatically from the previous month. Simon’s new cocktail of pain medications seems to work marginally better, though his pain still routinely reaches epic, horrifying levels. The vancomycin regime is still as time-consuming, but it has become easier now that it is more routine. Eli still has a perpetual ache in his gut, and I am still worried. But the days are a little longer, a little lighter, and the Torch Relay Concert and the Olympics are something to look forward to. Even though Simon is critical of his playing, I remind him that this time last year, he played a single song at the Precious Littles’
CD
release. Then, he could barely keep up, strumming the simple baritone riff to “99 Days.” Now he will be able to play through and solo on “Make Me Proud.” Although the past year felt like a series of baby steps forward followed by several huge slides backward, his playing has progressed.

A LARGE STAGE
has been erected behind the courthouse and a wheelchair lift has been installed so that Simon can access it. On the day of the concert, the crowd that swells out front is huge, one of the largest Simon has ever played in front of. More than a thousand people, someone tells me. Almost three thousand, someone else says. Whatever the actual number, it is a big crowd.

“Kara,” Joe says when we meet up with him backstage. “I’m nervous.” It’s true; he looks pale and a little breathless. Gerry, too.

“Hey, guys,” Gerry says. He lays the large case of his upright bass down and pushes his owlish glasses a little farther up the bridge of his nose. Simon, however, is beaming.

“Hey, Simon,” Joe says, in his slow drawl. “Aren’t you even a little jittery?”

“Yeah, I am,” Simon says, “but mostly I’m just happy to be here and be a part of the show.”

I am more nervous than Simon, I think, when he rolls out onto the stage. There is a bit of jockeying around as he tries to navigate the electronic gear and coils of cables, but Joe and Gerry help him get set up with his resonator guitar. Joe picks up his acoustic and perches on his stool, and Gerry stands beside his upright bass. The emcee, a
CBC
television announcer, introduces the band, noting that this gig marks Simon’s return to public performing since a work accident a year and a half ago.

Backstage, I sing along when they reach the chorus:
I’m going to sing like the rain on the roof. I will find my truth and I will make me proud.
The applause when they are done is thunderous. Simon rolls off, beaming still.

“Make me proud,” Gerry says, reaching out and giving me a bear hug. “You bet.”

“You did good, Si,” Joe says.

“Thanks, Captain Little,” Simon says. “It felt good. It felt like coming home.”

MUSIC MAKING, OR
musicking, is one of the most complex cognitive challenges the human mind can undertake. Neurobiologists have demonstrated that the act of making music activates the executive functions of the prefrontal cortex, the emotional centers of the limbic system, and the motor systems in our basal ganglia and cerebellum, linking the most highly developed, specifically human functions of the brain with the most ancient and animal-like. There is likely no other single activity that activates as many complex neural networks while at the same time tickling the brain structures involved in motivation, reward, and emotion. This is why we can perform the difficult task of remembering the melody and lyrics of a long-ago song—say, a song to remember the French names of body parts or one played at a grade eight dance or sung by our mother—with relative ease.

Research compiled by Gottfried Schlaug and his team at Harvard has shown that the complex combination of sensory, cognitive, and motor functions needed to make music is a strong stimulator for brain plasticity in both the developing and the adult brain. They have shown that not only is the front part of the corpus callosum (the area of the brain that connects the left and right hemisphere) larger in lifelong practicing musicians, there are also microstructural changes in the cerebellum. This ongoing research suggests not only that music is a powerful therapeutic tool for people recovering from brain injuries but that, in general, musicians appear to be less susceptible to age-related cognitive decline, presumably as a direct result of their daily musical activities. Schlaug writes that “music might also provide an alternative entry into a ‘broken’ brain system to remediate impaired neural processes or neural connections by engaging and linking up brain centers that would otherwise not be engaged or linked with each other.”

This is what I think about when I read that passage: Marc, my beautiful father-in-law, sitting beside his son for days singing the repertoire of family songs by Bob Dylan, the Band, and the Beatles. Simon is strapped into an upright position, his head droopy and body listing to one side, his eyes unfocused and sleepy, his left hand clenched in a tight claw. Marc launches into “Hickory Wind,” and on the third verse Simon suddenly lifts his head and looks toward his father. He mouths the shape of words:
It’s a hard way to find out that trouble is real.
The next day he begins writing words; two days later he is speaking. I know it is egregiously unscientific for me to make such a bold and unprovable claim, but I believe this to be true: music opened wide the closed doors in Simon’s mind.

THINGS DON’T MAGICALLY
fall into place after the Torch Relay gig, but it does mark a change in our life. The vancomycin antibiotic regime finally ends, and Joe and Simon sit down to review a list of potential gig dates for the next four months. It’s not a lot—a gig or two a month—but it’s both paid work and something to work toward. Simon is resistant at first but finally forgoes practicing on the resonator guitar in favor of his preferred instrument, a tobacco sunburst Fender Telecaster with a rosewood neck. I return to my writing, finally finishing the rewrite of my graduate thesis project. Eli works two jobs over the summer, saving for the fall, when he will start at the University of Victoria in the Health Sciences Department. In our backyard we build raised garden beds and pathways for the wheelchair so that Simon can plant tentacled potatoes and rows of sweet pea seeds. As green things start to grow, it is possible to look back and marvel at the formidable moments we survived and the progress we have made. Continue to make. And it is possible, if only for a moment, to feel transformed into something blooming and hopeful once again.

The promise of a new normal was a promise we had made in good faith, and now we are able to start discovering it.

“Cool,” Eli says when I tell him I am planning to write a nonfiction account of Simon’s accident. “But—” he adds, a deep wrinkle furrowing his brow. “How does it end?”

SEPTEMBER 2010

OVER THE LABOR

All The Little Things

IN TRUTH I
never thought my life would end up here. At night, when I dream, I am up and walking. In the morning, when I open my eyes, the chair is still there, parked beside my bed, a vivid reminder that my body remains in a stasis I can’t simply “move” through, a vivid reminder that my legs don’t work and that to a certain extent the scope of my life is dictated by where the chair can and can’t go.

I never knew what paralysis was like before my accident; I never knew anyone in a chair and so never really understood the possible ongoing health complications of spinal cord injury or the challenges that an inaccessible landscape can present on a daily basis. My injury automatically puts me in the role of raising accessibility awareness in my community. Kara likened it once to how familiar environments were transformed when we were accompanied by a toddler Eli, safe spaces turned suddenly precarious when viewed through the eyes of parents needing to baby-proof: the danger or difficulty is always there, just invisible until your perspective is changed. You don’t really see it until you have to.

The mantra at rehab was “Never let the injury define you,” and it always kind of irked me. I think it would be more accurate to say “Don’t let the limitations of the injury be the defining feature of your life.” The reason I make this distinction is because this injury is, for me, a huge part of my identity now. I described it initially this way: When your life shatters, and you survive it, at least you get the option of choosing which broken shards and fragments you want to put back together. Father? Of course. Husband? Yep. Guitar player? All right, let’s see how much of that we can reinstate. Fledgling snowboarder? Not so much. What is really, truly important to you, you fight for.

The physical limitations of the injury are also very real. I am far more prone to pain, infection, and fatigue than I was before my accident. Many everyday activities I used to enjoy are more difficult, stressful, or complicated now. How I navigate these limitations also defines who I am, and it is an ongoing process to learn what are the limitations I need to accept and integrate into my life and what are the limitations I need to challenge and push through. And then there is advocating for the elimination of limitations that are externally imposed because of inaccessible environments. These unnecessary limitations are important examples of why accessibility awareness should be an integral component of any community-building project.

I try my best to be honest and unashamed about some of the more difficult aspects of my injuries. I have signed up to an online forum, CareCure, out of Rutgers University. It is an enormous source of practical information and provides a great opportunity for peer support now that I am removed from regular interaction with fellow wheelchair users. Chatting online, I realize I’m not alone in not prioritizing walking as my ultimate number one recovery goal. Bowel, bladder, sexual function—I’d give up the hope of ever walking again just to get control over any one of those.

But I am blessed with a strong and loving family and an inclusive and supportive community that have helped me regain my life, and I look forward to a future filled with music. I am inspired when I hear of the success of my
GF
Strong friends and fellow inmates. John, the veterinary surgeon who had a high-level incomplete injury, has returned to performing surgeries and has even traveled to Africa to see gorillas in the wild. Although it is a long and difficult process to recover from a spinal cord injury, meaningful recovery can and does happen, and he is a shining example of this. When you go through the process of rehabilitation at a place like
GF
Strong, and you work so hard to relearn things like eating, shaving, and sitting on a toilet, and you witness others going through similar struggles, you learn to better appreciate and celebrate the trials and triumphs of daily life. The little things (that are not so little any longer) matter a whole lot more now.