Fallen: A Trauma, a Marriage, and the Transformative Power of Music (23 page)

“Even though I seemed to be functioning normally,” he explains to us one day in the cafeteria, “I couldn’t remember anything from day to day. People would visit, and a week later, when they returned, it was as if I had never seen them.”

Pain is the ballast that eventually allows his days to accumulate once more. As his spinal shock wears off, sensation returns, but it is distorted, amplified, shocking, and relentless in its intensity, and he remembers: a doctor blowing on the skin of his forearm and igniting a wildfire in his nerve endings. An electric storm caused by the fall of a shirt sleeve or the brush of a bedsheet. Pain, a hard, bright light.

THE EFFORT THAT
Simon puts into his rehab is epic. The physio gym, unlike the
OT
gym, is dedicated solely to moving and exercising the body. In the back corner are parallel bars for those who are able to practice walking. The rest of the L-shaped room is lined with dark blue plinths and littered with various props: hand weights, medicine balls, and TheraBands. Here, Simon first works on balancing. He sits on the edge of a plinth, and he and Sean (or I or Eli or Marc or Lorna) toss a large beach ball back and forth. Balancing is both extremely difficult and scary for Simon, but this work eventually enables him to sit and balance long enough to put on his own shoes. Next, Sean works on building up arm strength, urging Simon to four, five, and then six! seated push-ups on the plinth; this rebuilding of gross motor strength eventually allows Simon to accomplish sliding board transfers competently enough that he no longer needs to be flown, a giant baby in a stork’s bag, back into bed. Sliding board transfers lead to transfers onto a raised toilet seat, then onto a shower bench, and eventually into the passenger seat of a car. The transfers into a car are particularly scary for me to watch or help Simon with as the effort it takes to make the movement requires him to pivot and swing his head with force. Simon is long in his torso, and several times the vulnerable left side of his head, still with no skull protecting the brain, comes precariously close to thwacking the frame of the car. But Simon trusts Sean and his meat-and-potatoes tough love attitude; Sean’s approach keeps Simon pushing hard every day.

Si’s occupational therapy sessions cover a broad range of activities that fall under the general term “life skills.” At first the sessions focus on the fine motor skills of Simon’s left hand. At the urging of either Melissa, the
OT
, or Natalia, the ever-cheerful physiotherapy assistant, Simon picks up pennies or fits small metal pegs into different-sized holes, activities reminiscent of games for toddlers. Simon’s frustration and boredom are, however, mitigated by the effectiveness of these exertions. More and more mobility returns to his stiff left fingers. Next he works on applying the crude strength he is regaining in physio to daily activities like dressing and showering, activities once taken for granted that now have to be broken down into small steps for him to be safe and successful in accomplishing them. The
OT
sessions also focus on proprioception, or an awareness of one’s body in space, a faculty that is affected by both head and spinal cord injuries; a lack of awareness can mean banging an unfeeling knee into a wall or catching and dragging a foot under a wheelchair.

With Richard, the nurse he is most comfortable with, Simon braves the intimidating task of learning how to self-catheterize to empty his bladder. He is frightened for days before attempting it. “I don’t know what I’m more scared of,” he says. “That it will hurt or that it won’t hurt.” When the time comes, it doesn’t hurt, and that is both a worry and a relief.

In the evenings, Simon begins the painful work of trying to play the guitar. Although the acoustic that a friend, John Laird, loans Simon is small and lightweight, at first it is work enough for Simon to practice holding the instrument before he even begins strumming simple patterns. The barre chord requires him to use the full strength of his fingers to fret the strings, and this proves impossible for the left hand. Not using barre chords requires him to rethink how he will play. Simon turns to Guido, who often visits in the evening, to discuss these matters.

“Well, you know there’s ways to get around all those barre chords,” Guido says. He pulls an acoustic guitar out of a black case and strums a few sample chords. “And there is always the option of playing slide. That would be easier for the left.”

“If I start using a slide now, I’ll never get the left back,” Simon says. He gestures at the guitar Guido holds. “That is a nice guitar,” he says. Guitar-envy is plainly evident in his gaze. “Let me see it.”

“I picked it up online and got a luthier to adjust the bridge and replace the tuning pegs,” Guido says, passing the guitar over.

“Brilliant,” Simon says. He strums a G chord, then a C. “Ahh, so sweet.”

“It is sweet. The overall sound turned out even better than I expected. I’d love to keep it around, but I got it for you,” Guido says. “It’s yours.”

SUMMER LINGERS THROUGHOUT
September. I am grateful for the good weather as I worry that one big autumn windstorm will blow to bits the frail semblance of order we have constructed. I worry that with trees down and roads closed and power out the distance between me and Eli, who is now back at school, will be unbearable. I have moved into the apartment near
VGH
, the one Guido secured when Simon was still in Step-Down. The fifteen-minute walks between the apartment and
GF
Strong that bookend my days provide fluid moments of reflection and bridge the busy hours at the rehab center, working so hard to be strong and positive for Simon, and the quiet hours alone in the evening: clutched, knotted, spasmed, anxious hours. These walks, in the lemony light of early morning and the buttery glow of the evening, help me return bit by bit to my own body.

My body is sore. I’ve lost weight and feel like a ghost, thin and porous, and either teary or numb with lack of sleep. My damaged vertebrae are at the exact same level,
T12/L1
, as where Simon’s spinal cord has been compressed and nearly transected. Always a vulnerable area for me when I am overtired or stressed, my lower right back is in a perpetual state of spasm. I play over and over in my mind the spring nights not so long ago when I was overworked and anxious about my mother’s health, when the mild spasm in my back turned into something much worse and I was unable to sleep or move. How I woke Simon to lift me out of bed. The thought that I am not strong enough continues to plague me. How, with my weak back, will I lift Simon? How will I do for Simon what he did so easily for me?

And housing? After we have yearned for a house of our own for so many years, it seems impossible to turn it into a reality. Many people give me counsel to wait: The housing market is at a peak—prices will surely come down over the winter. And it is too soon after a trauma to make huge financial decisions. Who knows what the next few months will bring? The next few years? It is well-intentioned, good advice, but an even louder internal voice tells me that if we—Simon, Eli, and I—are going to survive the next few years, we need a home. We need to not be in perpetual transition. We need a permanent place to begin rebuilding.

I do not find many answers on these walks, only more and more difficult questions, but the act of walking helps. It helps to untangle my thoughts. It helps to reorient me to a world that, for the past month, I have navigated as if half-asleep; everything outside the hospital so bright, so busy, so loud that it hurts. When my questioning thoughts become too clamorous, I tune everything out to concentrate on the idea of sensation or lack of it: What does it feel like not to feel, to be accountable to large expanses of silent skin? I concentrate on the sensations of my skin. The way my cheeks are lit with crisp morning air as Laurel Street stretches itself awake. The rhythm of my gait and the pressure of each reciprocating step, the bottom of my feet inside my shoes, the density and flatness of concrete underfoot versus the energetic cushion of grass and loose dirt. A stubbed toe, a welcome pain.

I RETURN TO
the coast to watch Eli’s first soccer game of the season and to go on another round of house hunting with Marc while Lorna stays at
GF
Strong with Simon. It is the weekend and the hospital is quiet. Without his set weekday rehab schedule, Simon is restless. After lunch, he heads down to the gym to do a workout on the pulleys. Lorna, following behind his electric wheelchair, ducks into a washroom on the way, telling him she will join him in the gym in a moment. When she arrives and enters the big gym, Si is the only person there. His back is to her and he is on the far side of the echoey, cavernous space. He leans forward trying to adjust the pulley, a difficult maneuver from his chair. He begins the hard work of a bicep curl, counting his repetitions. He tries so hard to find some improvement, but in that moment his journey toward recovering seems, to Lorna, as huge and lonely as the empty gym. He does another set and then another. He never stops trying. It breaks her heart how he never stops trying.

THE HOUSE ON
Cooper Road is Eli’s favorite. It is approximately three long country blocks away from our old house and just a few driveways away from the house Simon and I contemplated buying in the spring. From the outside it is a crude, boxy house, a wide rancher with a second-story addition on the left side. It is solid but lacks any gesture toward architectural grace. Inside, the walls are painted in a variety of dark shades—mustard, rust, olive green—all shades I like, but put together, they produce a dark, cavelike feel. Inhabited now by a family of five, it is a busy, cluttered, homey space. The homeowners describe the work they have done on the house, and I see they have significantly increased its value. But there are some design choices that I know Simon will disapprove of. For example, small stones set in black caulking line the tiles of the kitchen countertop, a decorating choice Simon would dismiss with a finishing carpenter’s snobbery as belonging to the Blair Witch Project school of design.

But it is big. Big enough for a wheelchair user to not be constantly scraping his knuckles or feeling as if he, with his bulky equipment, is in the way. It is big enough that if Simon needs to fall asleep in his room at five o’clock in the evening, Eli can still have a friend over, upstairs, without disturbing anyone. It has been advertised as wheelchair accessible, but once there, I realize what that means is there is a concrete path around the house and a wheelchair can get inside through the back double doors. To make it fully accessible, we will have to renovate. Our architect-friends Steve and Nikki come to view it.

“With this amount of space,” Nikki says, “you have an endless amount of possibility.” They immediately offer to help with the design work.

In Simon’s absence, his boss, Dave, comes to inspect the quality of construction. “It’s well built,” he says. “And we’ll help you fix it up the way Simon would like.”

Lorna hates it. It is dark, and the organization of the space does not make sense to her. She worries that it will require a great deal of renovation to be made accessible, and she wants our transition out of rehab to be seamless and unburdened with extra worry and work. It is difficult to explain that I am choosing this house for what it is not as much as for what it is. It is not perfectly finished: walls need to be torn down and the living-room ceiling raised and drywalled; it needs new paint, lighting fixtures, and appliances. A few skylights and a ramped porch out front. Even though I could not begin to afford this house without financial support from Simon’s parents, it otherwise is in harmony with the game plan Simon and I have been working with over the past decade. This is a house still under construction, a house we can move into and, over time, transform. Make our own. Rebuild.

TODAY SIMON AND
I are shocked when John, the veterinary surgeon, enters the physio gym upright and walking. He moves slowly and painfully with the aid of a walker and supported by a therapist, but... he is walking. Walking. When I turn back to Simon, I see that he, like me, is crying. He swipes his right hand across his eyes.

“Way to go, John!” Simon says across the gym. Then, to me, more quietly: “I don’t think I’ve ever been happier for someone in my life. Happier, or more jealous.” He turns to Sean. “Can you put me on his therapy schedule?”

“Oh, man, I know,” Sean sighs. “I wish I could.”

Back at Simon’s room we learn that Danny is sick. He has been taken to
VGH
by ambulance and returned to the
ICU
, a superbug infection swimming in his blood.

“What a day,” Simon says. Shortly after seeing John, Simon’s physio session had to be cut short because of another condom catheter malfunction, a sudden stain of urine spreading down Simon’s gray sweatpants.

“I can handle this. I can get through what has happened to me,” Simon says, staring at the empty bed beside him. “But if it had happened to Eli—I don’t think I could bear it.”

EMILY MAKES THE
trip across the country for a brief weekend visit with her wife, Sarah. Simon is anxious. How will he appear to his sister? He explains that sometimes he feels as if he has died and been reborn.

“Reborn. In a wheelchair,” he says. “It’s hard to explain. I don’t know if she’ll understand.”

“She’ll understand.” I describe the long nights that Emily and I shared at his bedside in the
ICU
and Step-Down. “She was there for it all. She’ll understand. She’ll be ecstatic just to talk to you.”

On the airplane, Emily is anxious too. After what has seemed an unbearably long absence she hardly knows what she is walking into. Who will Simon be? And what are the new rules for being with him? Don’t look back? Don’t look forward? Will it be possible to acknowledge and articulate the profound existential moment that we all collectively have been moving though? What is her new role? Cheerleader? Caregiver? What will she say to him? What will he say to her? She records the moment of arriving at
GF
Strong in her journal: