Fallen: A Trauma, a Marriage, and the Transformative Power of Music (27 page)

At rehab, figuring out workable bowel and bladder care was the number one concern, not just for Simon but for everyone we met. The topic was discussed daily, openly and frankly, in the hallways and cafeteria at
GF
Strong. Incontinence offered an odd kind of democracy, and the relief in talking and laughing about it was palpable.
Bowels like routine
was the catchphrase most often repeated as a preface to the discussion of the various rituals that helped an individual’s digestive tract navigate paralysis. Simon has avoided most of the drug and suppository regimes that many others require, but he does need digital stimulation to activate his bowels. Because of the dimensions of the bathroom and the commode chair, he cannot reach that far, and so this job falls to me.

“I’m so sorry,” he says every morning. “I hate that you have to do this.”

“We’ll be in our home soon,” I tell him as I crouch down beside the toilet. “This is harder for you than it is for me. I’m okay with this.” And it’s true. I am okay. The ick factor of dealing with bodily issues has long since faded, and our only other option is to have a home care attendant help Simon with these critically important functions. Neither of us want to introduce a stranger into these most private areas of our life. As challenging as the situation is, we are at least able to preserve a modicum of privacy and dignity. Tackle it as a team; stay connected.

It is harder for me to cope with everything else outside of these shared moments. I have been spending a few hours in the afternoon at our old house, moving through what now seems the museum of our previous life, wrapping dishes in tea towels, crying when I stumble over Simon’s shoebox of assorted treasures—old cards and letters and concert stubs—or the handmade box, decorated with cut-out butterflies, that Eli made for Simon on his thirtieth birthday, Eli’s eight-year-old scrawl across the top:
For Simon’s Telecaster Fund.

Simon sleeps long hours now that he has returned home, but the nights are often fractured by the lurching, jolting pain that wakes him, crying out. After being woken up several times in a row, I often find it hard to return to sleep. Many nights I wait up until four a.m., when I know Emily, three hours ahead in Toronto, will be having her morning coffee and I can call her. It is during one of these early-morning conversations that we both confess to occasionally, guiltily, longing for the clarity, the crystalline quality of the present moment that we existed in when Simon was in
ICU
.

“Everything is a little muddier now. Weighted,” Emily says. “Hectic.”

“I know. It’s what I imagine it feels like to be a soldier, home from the war but with no talent left for everyday life,” I say. “I just want to curl into a ball and sleep for, like, a year.”

But there is no time to curl into a ball. In addition to supporting Simon through his daily routines, there is an interim house to run, a new house to plan for, and an old house to pack up. There is a sixteen-year-old desperate to return to his regular family routines. There are doctors to see and physio appointments to make. There is the ever-present pressure that the window will close on Simon’s recovery time. And then there is Christmas. We all take a break for Christmas.

Snow falls throughout December, unusually thick and consistent for our rainy coastline. Snow banks accumulate at the side of the road, making it difficult for Simon to go for a wheel around the neighborhood. But the world outside the bedroom window is dream-lit, edged in silver, flaked with white, and the close, dense blanket of clouds is a comforting inky blue: a perfect Christmas snow globe. Our new next-door neighbor, Guy, hangs lights on our house and a wreath on our door, and one Saturday afternoon Eli goes out with Cam, the manager of the soccer team, and returns with a beautiful, bushy fir and a tree stand. I retrieve a box of our accumulated decorations. Up and bejeweled with lights and baubles, the Christmas tree is at least one familiar fixture in the house. Simon and I make gingerbread cookies, chocolate bark, and cranberry sauce, enjoying the sense of imposed snow-day confinement. Eli, however, is rarely at the house. He is ecstatic about the more-than-usual snowfall and the unexpected income opportunity it presents in the form of shoveling. It is Eli who suggests purchasing a Wii console for Christmas.

“For Simon,” he says and blushes. “It’ll get him moving a bit in the chair.”

“Yeah, you probably wouldn’t play it at all,” I tease.

“Well,” he says, still red-faced, “it is something he and I can do together.”

The Wii is a hit. Christmas morning, Simon and Eli play several rounds of electronic golf while I stuff the turkey and coat it in a sage and pancetta butter. Mom arrives midday with her two dogs and three oversized Christmas stockings, one for each of us. She wanted to have Christmas in the new house on Cooper, but I refused. Even without the snowbound roads, it would have been too much work to transition between houses.

“I stopped at Cooper on the way through,” she says as we all sit down for dinner. “It’s going to be great. I really wish we could have had Christmas there. It’s your first house. It’s a big deal.”

“Next year, I promise.” We snap open the red crackers. Simon reads his joke out loud while Mom and I don our green paper crowns. “At least we’re not buying cold takeout to eat in Simon’s hospital room like Eli and I did at Thanksgiving.”

“Yeah,” Eli grumbles. “No leftovers.”

“And no more chemo either,” I say. Mom’s hair is now a fine silver bristle covering her whole head.

“To surviving,” she says and we all raise our glasses, clinking before we dig in. “Your gravy is better than mine,” she adds, her mouth full. It is less a compliment and more an accusation. Nobody messes with my mother and her gravy. She sighs, smiles, and raises a turkey-laden fork: “Well, honey, I guess it’s time I pass on that gravy torch.”

JANUARY IS A
difficult month. Simon, being so dependent, is acutely aware of every pulse, every shade of my shifting moods, and often I am ashamed as he witnesses how frequently my will falters. He knows the exact moment when I want to give up, go back to bed, and pull the covers over my head.

“Oh, Stan. I’m so sorry all this work lands on you.”

“Don’t apologize,” I say. “It’s okay.” But it is not okay. I am frequently overwhelmed by the daily chores and the work needed to care for his body. Even my lists can’t save me. I am daunted by the idea of rebuilding our lives, which seems a futile pursuit, impossible and illusory, now that we live with the sure knowledge that everything can change or be destroyed in the span of a few seconds. I might as well be trying to construct a three-bedroom family home out of pieces of driftwood gathered on the beach.

I worry constantly that we are not doing enough rehab or are wasting the “critical healing time.” I book Simon for weekly physiotherapy sessions at the hospital, though they depress him. I find them depressing too. After a month of nesting and watching
DVD
s, it is hard to face the reality all over again of how sore and depleted Simon’s body is and how compromised his left-side strength is. And the physio room at the hospital is depressing all on its own. Small and understaffed, it is full of elderly, mostly overweight and radically underdressed people, missing limbs, suffering from strokes, or fighting for some postsurgical mobility. Signs are posted all over the hospital advising people to avoid the building if at all possible because of an outbreak of Norwalk flu—Simon’s nightmare. Jennifer, the physiotherapist, is long-limbed and athletic, and she and Simon get along well, but often she manages two or more patients at the same time, and there are long stretches where Simon lies on a plinth halfheartedly lifting weights, trying to avoid the invisible flu germs. When she does work with him, she is indignant about his lack of progress.

“No floor-to-chair transfers yet?” she exclaims. “When I worked at
GF
you wouldn’t have left rehab without being able to do one. And what’s with the anti-tippers on the back of your chair?”

The anti-tippers are two rods with small caster wheels that act as a backup balancing system. New wheelchair users often remove these wheels, as without them the chair can more easily traverse uneven surfaces. But because Simon’s balance is so challenged and we are afraid of another fall, not only has he left his anti-tippers on, but he still wears his seatbelt at all times.

“I know Jennifer is just trying to motivate me, but I can’t get with the whole macho para thing,” Simon says after his first session. “I want to be healthy, but I’m no Rick Hansen. I’m keeping my safety belt and anti-tippers on, and I’m not going to turn into some weight-pumping gym dude now that I’m in a chair. I wasn’t that guy before my accident.”

“I hear you,” I say.

Despite Si’s lack of enthusiasm, we continue to go. It’s good exercise at least to get out of the house and practice the difficult transfers in and out of the car.

SIMON’S FEET BECOME
massively swollen, and every night I massage them when he gets into bed, trying to encourage some blood flow back up his legs. Then one Sunday morning at the end of January, he discovers a sore while getting dressed.

“What the fuck,” he hollers. From the kitchen I hear the tone of someone’s heart dropping to the bottom of their gut and I come running. “What the fuck is that?” he says, pointing at the image of his right foot in the mirror adjacent to our bed.

There is a two- by three-centimeter oval of purple necrotic tissue on his heel. A deep tissue wound. We call the nurse at WorkSafe
BC
who came by only two days ago to inspect the swelling in Simon’s feet and legs. She instructs us to take pictures of the sore and outline its shape with black marker so that we can chart whether it is getting bigger or smaller. A battery of visits and consultations with doctors, nurses, occupational therapists, and physiotherapists follows, each of whom has slightly different suggestions, though the basic principle remains the same: allow no pressure on the heel at all.

Simon and I make a twenty-four-hour plan. We promise each other we will be diligent and resolute until it heals. I lie and say it will be fine. Simon agrees with my lie and says, yes, it will be fine. But the truth is that skin this thin is the ultimate betrayal, and the idea of a pressure sore flattens us both. It robs me of all my remaining energy, and I spend days running to the bathroom every few hours to crouch or cry or vomit. I am horrified that I didn’t notice the sore before it got so bad. Fear and doubt about my ability to cope, unlike anything I have ever experienced, worms its way into my heart. The kind nurse at WorkSafe
BC
tells me over and over not to blame myself, that a pressure sore can happen terrifyingly fast—in less than four hours. Despite her good intentions, this fact brings no relief.

SIMON’S FOOT HEALS
, slowly but, thankfully, without any sign of infection. Our days become a little busier and more structured. We begin to develop some consistent routines and rituals, and they fill our days like a full-time job. Simon’s daily bathroom, shower, and dressing routine takes the entire morning to accomplish, and then, just before lunch, I help him with a series of stretches and range-of-motion and balancing exercises. The afternoons vary according to the day of the week. On Wednesday afternoons, Simon visits with the psychologist, Bruce. Based on my reading of
The Brain That Changes Itself,
I encourage Simon to try out new skills, so on Mondays he takes an hour-long lesson with a classical guitar teacher, Paul, and on Fridays I drive him to the Sechelt Art Centre for a figure-drawing class. Tuesdays and Thursdays, I return to a three-o’clock Pilates class in an attempt to decompress my cranky lower back while Joe Stanton visits with Simon. Saturday afternoons we watch Eli play soccer, and Sunday is our rest day: we snack on mandarins and popcorn and watch the boxed set of The Wire
DVD
s that Simon’s cousin Lia sent us.

I also buy the Posit Science brain-training program featured in Doidge’s book, and it becomes a daily afternoon activity. There are two discrete programs—one that targets the auditory cortex; the other, the visual cortex—and Simon spends an hour on each every day. The auditory cortex program begins by differentiating pitches and various phonemes—a
ba
and a
da,
say—and progresses to various memory games. The visual cortex games are more colorful and varied and work at increasing the speed at which visual detail is processed. Simon is occasionally frustrated by these games, especially differentiating
ba
’s from
da
’s, and he curses the software in a way that is out of character for him, but he perseveres. We eat dinner by five-thirty because by six, Simon is bone-tired and ready to get back into bed. This combination of brief but intense physical activity (getting through his morning routine and exercises), mental activity (the classical guitar, drawing lessons, and brain games), and extra sleep is extremely productive, and almost daily I notice improvements in his overall focus and clarity of thought.

Joe’s visits are always comforting. Joe doesn’t like to talk a lot; he just comes to play. “Hey, Simon,” he says when he arrives. In my mind, the way Joe says “Hey” is always spelled with an a: Hay, Simon. “Hay, Joe,” Simon returns, mimicking Joe’s ageless cowboy drawl. Joe’s wisdom and grace lie in knowing that when words fail, as they so often do, there is always music, and he coaxes Simon into a lyrical and rhythmic conversation. With an intuitive sense of when to push and when to pull back, Joe provides a framework for Simon to explore musical thoughts and ideas. At first Simon can play along only for a few minutes, but gradually their playing time lengthens, and soon they start practicing specific songs. Often, returning home from Pilates, I hide around the corner of the kitchen in the carpeted hallway so I don’t interrupt. I call Emily, holding up the phone, so that she and I can listen to them sing together.

The Precious Littles delayed having the official
CD
release party after Simon’s accident, but a date has finally been set for the end of February, and one day Joe asks if Simon wants to play a song with the band.