Fallen: A Trauma, a Marriage, and the Transformative Power of Music (14 page)

It’s a real place, the watery paradise I imagine: Scott’s Falls. Simon and I biked there once when we were seventeen. We walked on smooth, round stones to the bottom of a large waterfall and splashed and swam in our underwear. It is a moment in my mind that existed so long ago and was so perfect, it feels more made up than real.

At night I wonder if Simon’s soul will remain the same even if his brain has changed. I have never before thought about the soul as a distinct entity, because I never before saw the point of such speculations. But experiencing how thin the veil is between the parallel states of taking or not taking a next breath has created a new kind of openness in me, and I wonder if it is Simon’s soul that speaks through his right hand. I wonder if that conversation is ours and ours alone and will go on, unchanging, regardless of what recovery happens within his banged-up body. These fanciful questions, however, remain forever unanswered and relegated to the nighttime hours; by day I work on gradually building a picture of the brain so that I can begin to understand what is happening inside him.

AUGUST 4, DAY 14

7:30 a.m. The nurses just kicked me out of your room so they can wash your back and do bowel care. There are bruises and horrible blisters on the top of your right foot from the boots
ICU
strapped on to prevent your feet from drooping, and a horrible sore on the back of your head, there maybe since the fall but big and mushy now from lying on it. Oh, the indignity of the body! I worry this will make you feel depressed. How could it not? It makes me feel depressed. Or maybe not depressed, exactly, just something different than the elation I felt when you first opened your eyes.

Early this morning, you reached your arm for me and put your hand on the small of my back. As if you know it’s hurting me. It’s impossible to know how aware you are in the semiconscious cloud you drift in and out of and yet, even in this state, you still are trying to take care of me.

The respiratory therapist was trying to get a baseline for your breathing capacity and, for the first time, you breathed more deeply when she asked you. This morning you seem less agitated and disoriented.

Your mom worries that you don’t recognize her, although I am sure you do. I worry that your mother—in her frantic need to do something—is too much: too loud, too anxious, too stimulating. She is, like you, a person of action, and she feels there must be something that can be done to wake you up. She has been showing you tiny pictures of Ormstown on her camera’s image viewer, images too small, I think, for you to focus on. She wants to put coffee in your feeding tube and give you a guitar. She blames everything right now on the tracheostomy, wishes that it had never been performed, as if this is the key factor in the speed of your recovery. I want to tell her that when I signed the consent for the trach, there wasn’t a third, magical option for you to be all better right now. But I know she just wants to help. To do something. She, like all of us, is desperate, wanting so badly to lessen the pain of what your body is going through. And maybe she’s right: maybe there is a certain type of stimulation that is the key to waking. Music, I think, must be the answer for you. The idea of bringing you your guitar right now seems beyond cruel to me but... you do need music. Bach, I think. And Bob Dylan.

Oh, Beau, these are tough days. I’m trying to be so solid in that room for you. To let you know that this is transitory, that you are moving through it (at your own pace), that we are moving through this together, that one day we will be on the other side. And I believe it almost all of the time. I am trying to know it, in every molecule of my being. But there are moments too when I feel myself surfacing from the shock; like you, I am waking from a dream-state, but still the nightmare continues. Is only beginning. For you: dealing with the indignity, the pain, the confusion, the changes in your body, the absolute lack of control. For me: figuring out how to be here, for you, while at the same time figuring out the new logistics of our life. For the glimpses of despair Eli and I see on your face. For all of us: the grief of being so brutally wrenched from the flow of our life. Walking in the woods with Paloma. Listening to you play your Dobro by the rock garden. Watching you promote the Precious Littles’
CD
. Picking blackberries and plums and getting wood ready for the winter.

Lao Tzu said, “When I let go of what I am, I become what I might be.” I find myself repeating it like a mantra or a prayer when I stray toward too much sorrow or despair. There is something there, in the Taoist’s assertion of nonattachment, for all three of us: a plea, maybe, to not hang on, kicking and screaming, to the idea of our past life. Change is coming. I have found a kind of solid peace by focusing on being present and in the moment, yet, as I start to look ahead into our very uncertain future, it seems difficult, if not impossible, to sustain that type of presence in the daily, larger operations of the world.

So... I am praying for my own strength as well as yours, for courage beyond what either of us has yet to draw on. I am praying for peace and resolve and patience and resourcefulness and adaptability. I am praying, baby, for your mind. Your beautiful mind.

“WHAT IF HE
is a vegetable?” Lorna asks upon arriving at the hospital. We are standing outside Simon’s room while a nurse draws blood. “What if he ends up in a long-term care facility, drooling in a corner, alone and sad?”

“That won’t happen,” I say. I am angry and exhausted by the question, although Lorna is only articulating what we all fear most. It is difficult for me to talk to her first thing in the morning. She arrives, recharged after a night at Jer and Barb’s, with the energy of a hurtling cannonball, and after a sleepless night, I am often flattened by our exchanges.

Just as the nights are tiring to me, the days are long and difficult for her and Marc, and she is haunted by a story a friend of Jer and Barb’s told her. This woman’s brother-in-law was in a car accident and now lives in a group home because he never made it into rehab. The rehab center had decided he wouldn’t benefit from therapy because he could no longer learn. For several years he cried daily for his wife to take him home. Once a week they would take him by taxi to a physiotherapy class, but no one expected that he would ever leave the care facility.

Lorna is also still haunted by the tracheostomy and the image of the nurse vigorously washing Simon’s hair. She is convinced that the operation caused Simon to have a stroke and has been campaigning to have me, the nurses, and the doctors acknowledge that Simon’s condition worsened immediately after the trach and the hair wash, arguing this as she might a court case. I don’t agree that his condition worsened after the trach—in my experience, it briefly but dramatically improved—but in the last twenty-four hours, as I’ve felt him drift farther away, the constant campaigning has become more upsetting.

I leave the hospital and, after a nap, meet up with Guido and Eli. Guido has been searching for an apartment for Eli and me and has found one, three blocks from the hospital on Willow Street. It is a tiny attic space, clean and airy as an
IKEA
showroom, rentable by the month. There isn’t much room for both Eli and me, and the rent is more than I can afford for any length of time, but I sign a damage deposit check. I will remain at the Park Inn for the rest of August, and now Eli and I have a place close to the hospital, at least for September. We’ll figure out October, I tell myself, when the time comes.

When we return to the hospital, Simon reaches for Eli’s hand. I am certain he smiles too. When Guido leaves the room, Simon moves his hand from side to side. A wave? Later, as Eli and I sit on either side of the bed, Simon, for the first time, squeezes my fingers with the up-until-now dormant left hand.

Marc and Lorna have good news to report too. Today, as Marc sat beside Simon, holding his hand and singing the Band’s song “The Weight”—a family favorite—Simon squeezed the beat of the song in Marc’s hand.

“It was at the ‘and... aaand... aaaaand...’ and he squeezed... squeezed... squeezed,” Marc says. “He’s really in there somewhere, isn’t he?”

He’s really in there somewhere. We all take turns saying it: Emily, Lorna, Marc, Eli, and I. He’s really in there somewhere.

MARC AND LORNA
take Eli to the ferry, and Emily leaves for a nap. We are switching shifts: I am doing the early part of the night, and she will do the long hours into the morning so that I can get a little more than two or three hours of consecutive sleep. She is leaving in two days, and I have already started missing her. It’s hard to imagine not having her here, even harder, I think, for her to imagine leaving right now. I update my journal in the fading light of the sunset. Simon is asleep except for his constantly moving right hand. It’s as if it is overtired, overstimulated, and doesn’t know how to shut down for the night.

“Hmmm,” the new night nurse says after she performs a particularly brutal suctioning of Simon’s lungs and takes his temperature. “He’s still running a fever.”

AUGUST 5, DAY 15

Doctor’s History Sheet:

Pt. minimal response, zero verbal, blank stare.

Right upper extremity good movement.

Left upper extremity complete neglect.

Some confusion w commands, slow to follow but does.

Plan:

Repeat
CT
scan.

WHEN LORNA, MARC
, and I arrive in the morning, Emily is upset: Simon’s pneumonia does not seem to be responding to the
IV
antibiotics, and throughout the night, the gestures of his right hand became more vigorous and compulsive and less and less connected to any clear communication.

We sit down with the head nurse and request a trial withdrawal of all the morphine that Simon is on. It is impossible to say what Simon is experiencing in his body exactly, and while the last thing any of us want is to increase his pain, we all agree that we need to rule out morphine as a factor in his return to consciousness. The nurse, at first, is resistant.

“Extreme pain itself can interfere with a return to consciousness,” she says.

“He has consistently told me that he isn’t feeling any pain,” I tell her. She is unconvinced, but we, as a family, are united in wanting this. Lorna’s skill as a lawyer shines here, and she argues convincingly, refusing to take no for an answer. Marc contributes a story of his own bad reaction to morphine after surgery and a life-threatening infection years ago. The nurse agrees to consult with the doctors tomorrow morning.

AUGUST 6, DAY 16

EMILY IS LEAVING
today.

It has been two weeks since she arrived, two weeks that encompass a lifetime—every moment, every breath in, every breath out accounted for. Together, we have slipped into a natural rhythm, ensuring a twenty-four-hour presence at Simon’s bedside. She and I have shared stray recollections from our adolescence and conversations about relationships, aging, and trauma, but for the most part we have focused on the moment-by-moment task of making things work in this new, strange world, and we have accomplished this with blessed little need for conversation. We have shared the gift of being alone together. It is Emily’s presence, so full of strength and song (and so like her brother’s), that has kept me from being unbearably unmoored and lost during this time.

She has spent her final night with Simon, and when I arrive at the hospital in the morning, she is unusually rattled, even more so than the previous day. It has been a bad night. Simon’s right hand was ceaseless in its “talking,” becoming increasingly manic and jumbled, a compulsive tic-like movement rather than communication. After so many days and nights of constant vigil, Emily admits to feeling panicked at the thought of leaving, especially as it seems Si’s condition is worsening. But back in Toronto, her partner, Sarah, and her kids, Oscar and Alice, are preparing to move from the family home, where Oscar and Alice were born, to their new house. Emily is needed there. And so as Marc packs her bag into the car, I promise to keep her regularly updated, to call whenever I need to, even if it is in the middle of the night.

After Emily leaves, Dr. Anderson from
GF
Strong Rehabilitation Centre arrives to assess Simon as a candidate for therapy. The assessment is loud and vigorous, the trim, tiny doctor shouting out instructions: “Squeeze my hand, Simon! Simon, wake up! Wake up, Simon! Push my hand! Make a peace sign!”

And he does. Simon makes a peace sign, with no confusion, and I am very impressed, but after doing this he becomes so tired he closes his eyes and falls asleep, not to be awakened no matter how loud anyone shouts at him.

Dr. Anderson informs us that at this time Simon is not a candidate for rehab therapy and that she, too, is recommending a repeat
CT
scan. “Simon will remain here,” she says, “and we’ll continue to follow his progress.”

“How long will it take,” Lorna asks, “before he is a candidate?”

“It is hard to say.” She smiles in the particular way—kind but placating—that I have come to recognize as the precursor to bad news. “For some, it’s weeks or months. Some people can take up to a year before they are ready. Some people are never ready, and they are moved to long-term care facilities as opposed to a rehab center.”

Lorna and I retreat to the hallway to process this, the news we have been most afraid to hear.

“She says ‘long-term care facility’ and what I hear is ‘life sentence.’ I will never let that happen,” Lorna says. She is savage in her conviction. “I will never let him go to a place like that.”

“No,” I say. That night, as I doze off beside Simon, troubled visions of swimming out to the Merry Island Lighthouse thread my dreams: there are deer in the water beside me, and other, more frightening, things. Dark forms, indistinct and obscurely menacing: Bear? Cougar? Sea monster? The lighthouse’s flashing white beacon is obscured by a preternaturally thick fog, a fog so viscous and toxic it coats my eyes until I believe I am blind. I keep swimming. I grind my jaw so fiercely that I splinter one of my back teeth, waking with a mouth full of sharp bone.