Fallen: A Trauma, a Marriage, and the Transformative Power of Music (8 page)

It is also easier, when I stop number-watching, to observe the intricacies of the neuro-intensive care Simon receives. The nurse carefully charts every aspect of his bodily functions: heart rate, blood flow, oxygen and glucose levels, body temperature. The pressure inside his brain, the intracranial pressure, or
ICP
. All of it, more than I am capable of being aware of, is closely monitored or altered by her ministrations. Every whisper of Simon’s body is dependent on her care. He is a patient: a nameless, broken man with little chance of recovery, absolutely, utterly dependent on the nurses for his survival. Anonymity, I think, must help doctors and nurses do their jobs, but I recall the words of my friend Rachel Rose. She told me recently of a project she had embarked on, writing biographies for the elders at the Louis Brier Home and Hospital so that even though they may have lost their mobility or their speech, their continence or their cognition, the doctors and nurses and caregivers would be reminded of the things these people had accomplished during their lifetimes: becoming a physicist, surviving the Holocaust, bearing eight children. And so I compose an introduction to Simon and our family to tack up beside the note reading
zero Left Side bone flap
that is posted over Simon’s bed.

My name is Kara and I’d like to introduce you to my husband, Simon. I met Simon when I was 15 in grade 10 history class. We married when Si was 21, and our son Eli was born a year later. Si celebrated his 38th birthday last month with sushi, pecan pie,
good
Scotch, and a game of poker. His pet name for me is Stan, and I call him Beau or Baloo. He is the great love of my life.

The most important thing to know about Simon is he is a musician. He has a Fine Arts degree from Concordia University, where he studied jazz guitar. His passion is roots-based music and he has two bands: Gut Bucket Thunder, which leans toward the rock side of roots, and the Precious Littles, which leans to the country. Si is a pivotal and much-loved figure in the Sunshine Coast music scene.

For his birthday this year I gave him a trombone, an instrument he has never played. Initial attempts can best be described as melodic, rhythmic fart noises which cause spontaneous and uncontrollable laughter for me and Eli and acute distress for our dog, Paloma.

Simon is very close to his parents, Marc and Lorna, who still live in the farmhouse he grew up in, in Quebec. Also, his sister, Emily, and her wife, Sarah, and their two kids, Oscar and Alice, who live in Toronto. Simon’s most enduring weekend routine is to rise a half-hour earlier than the rest of the house, drink endless cups of coffee, and chat with his parents or Emily.

Eli, our son, is sixteen and an athlete, a soccer player. Saturday is soccer day, and every Saturday Si and I are on the sidelines (with more coffee) cheering him on.

Si is an improviser; he has a sharp, quick wit and a mercurial mind able to string widely diverging bits of info magpie-like into a cohesive whole. A musical mind. A mathematical mind. He is a gifted talker: loud, gregarious, engaging, generous, charming, entertaining. He’s the guy in the room who puts everyone at ease; the guy who pulls out a punch line for almost any situation. Si doesn’t just make people smile, he makes them laugh out loud.

For me, and many others, he has always been someone who is relentlessly healthy. Gentle-hearted but rock solid. A fighter. Impatient always, with his own weakness or vulnerability.

Some loves in no particular order: aged cheddar by the chunk, banana bread, watching hockey, Paradis clan parties,
CBC
’s
Ideas,
intelligence, skilled craftsmanship, Eli-in-motion, a soulful musical moment.

Dislikes: kale, humorlessness, affectation of any kind, lack of conviction, New Agey faux spiritualism, sentimentality, mediocrity, smelly perfumes, slow drivers, gangsta rap.

My most profound thanks to all the people at
ICU
who are taking such good care of him. He is a beautiful, good man, cherished by so many: me, Eli, his family and friends.

I DON’T KNOW
how often or by whom my wordy missive is read, and I do not think it has any impact on the overall excellent care he receives. But I notice two things: when I arrive at two in the morning, the on-duty nurse takes time to give me a detailed update or, if they are busy, a note addressed to me by name is waiting.
(Kara, Si had a pretty good evening. His pressures (
ICP
) have been much better and I’ve given him minimal extra meds. I have not had to paralyze him at all. I’ll be back at 4:00 and we can speak then. T)
Also, now, many of the nurses refer to him by name.
Okay, Si, I’m just going to moisten your lips.
Or:
Easy, Si, we’re going to roll you on your side.
And with this simple gesture, the use of his everyday name, he is, even in the depths of a coma, more present—the essential Si-ness of him—in that sterile, foreign, digitalized, glass room.

THE DOCTORS—ALL NEW
, unfamiliar faces and most so young they must be interns or residents—arrive for rounds before sunrise and once again explain to me that there will be no operation on Simon’s spine until his
ICP
is stabilized. Yes, I tell them, I understand. And I do, a little better than I did the night before. I am learning the meaning behind the acronyms:
TBI
is traumatic brain injury; an
EVD
is an external ventricular drain, and there is one inserted into the right side of Simon’s frontal lobe to drain excess amounts of cerebrospinal fluid, or
CSF
, to prevent a condition called hydrocephalus, which is an accumulation of liquid in the brain. But the two most important acronyms right now are
ICP
and
CPP
. Because, a nurse has explained, there is only a limited amount of room inside the cranium, the vertebral canal, and the relatively inelastic dura mater, and when there is an increase in any of the brain matter due to, say, bleeding or swelling, the
ICP
, or intracranial pressure, rises. When the
ICP
rises too high, it lowers the
CPP
, the cerebral perfusion pressure, or blood flow through the brain. No blood flow means no oxygen, and no oxygen means cell death.
ICP
is measured in millimeters of mercury, and a normal rate for a resting adult is 7 to 15 mmHg. A consistent
ICP
of over 20 mmHg requires medical intervention, and if it remains over 25 mmHg, the situation quickly becomes critical. I have watched Simon’s
ICP
levels throughout the night. When they rise above 20, a nurse comes in and opens the
EVD
and drains out cerebrospinal fluid until the pressure comes down.

“Simon’s family have arrived,” I tell the doctors. “They have a lot questions. Will we be able to sit down with someone today?”

There is some hesitation. A few of the huddled group—very young, definitely interns—avoid meeting my gaze. I am told Dr. Haw will answer our questions, but I have yet to meet Dr. Haw, and before a firm Q&A time is established, the doctors dart away, remote and insulated in their cloud of critically important preoccupation. Next to the doctors’ professional detachment, I am achingly raw, feverish with fear and grief and lack of sleep, and I feel defeated by my attempt to communicate with them. I watch as the sun rises, its early-morning heat noticeably raising the temperature in Simon’s room. It has been not quite forty-eight hours since he stood at the foot of our bed, maniac birds chirping outside, and rubbed his sore paw, but it feels like a lifetime ago.

The hour of shift change for the nurses is 7:30 to 8:30, and I am required to leave. I buy tea and a muffin for Eli and take them back to the hotel, where he and I make a few phone calls to finalize arrangements for his return to the coast. At 8:30 I return to the
ICU
, where I am greeted by Mike, the nurse from the day before. It is a relief to see a familiar face.

“I’ve got news,” Mike says, smiling. “They are scheduling Simon for spine surgery later this morning.”

“Why?” I ask. I don’t understand. Not two hours ago I was told that there was too great a risk that his
ICP
would rise dangerously high during surgery. Earlier, Dr. Griesdale had told me Simon’s
ICP
levels would not be stable and would likely rise over the first seven days as his brain reached its maximum amount of swelling. A panic surges through me, similar to the moment when we arrived at the hospital and I didn’t know how to find Simon. “The spine doctor told me the cord was severed; surgery isn’t going to change his chances of walking, right?” I ask.

“That’s right,” Mike says.

“But it could risk his brain, right? If his
ICP
rises? Why would they do that?”

“Well, if his spine is mobilized, it will be helpful to us in taking care of him,” Mike says.

“That’s not a good enough reason!” I shout.

“We’ll get more information for you,” Mike says, “okay?” Since Simon’s family arrived, Mike has been nothing but kind and considerate. While he wasn’t necessarily expecting me to be happy about this news, I don’t think he was expecting this distress. “I’ll talk to a doctor.”

“I want to talk to a doctor,” I say. “I won’t okay this surgery until a doctor has explained the reasoning to me and the rest of the family.”

I leave to go find Emily and my mother and to contact Marc and Lorna at Jer and Barb’s house. An hour later, we all return to the
ICU
. Mike tells us Simon’s surgery has been canceled because of an incoming emergency but was rescheduled for tomorrow. Dr. Griesdale will speak with us and answer all our questions later in the afternoon. The rest of the family is now at the hospital and the prospect of imminent surgery has been averted, so I leave to see Eli off to the coast.

I return alone to the hotel room to have something to eat and take a nap. Both concepts—eating and sleeping—seem foreign and impossible. Instead, I shower and cry. What if they canceled Simon’s surgery today because I made a fuss? What if the surgery today could have prevented some damage to his spinal cord? What if I had grabbed him by the hand as he deliberated at the foot of the bed and insisted he stay at home? What if I had never gone back to school and put us in the position of needing the extra income from construction? What if we had moved to Toronto instead of Halfmoon Bay? Or Halifax? Or Vancouver?

Over and over again I relive the moment when he stood at the foot of the bed. I can still feel the early-morning heat of our blankets. I am guilty for not dragging him back to bed. I am guilty for not properly reading the signs laid out before us: Simon’s moment of destabilization in the grocery store? Change, he had said, on an atomic level. And he rarely considered taking a day off. Why that Tuesday? I am convinced that the universe supplied all the evidence needed to predict this event, and I am guilty because I could have—should have—done something to prevent it. And I didn’t. I am consumed by imagining how, by simply reversing one of those decisions, I could alter this series of events. How far would I have to go back to ensure that what is happening now would be impossible? Would I return to British Columbia with Eli and leave Simon in Montreal all those many years ago? Would I give up my life with him to spare him this?
Yes,
I think,
yes, yes, yes.
This is a dangerous train of thought, one that pulls me apart, fiber by fiber. I am insubstantial as a tuft of carded wool. And I would make almost any deal with the universe if it meant I could undo the precise moment at which he fell.

Back at the hospital, I sit with Simon’s friend Sully, who, even in the summer heat, wears a plaid flannel work shirt, the cuffs frayed, and baggy, grout-stained jeans. I covet the flannel shirt, in all its tobacco-scented, oversized glory, and want one of my own to wrap myself in. If I asked, Sully would take the shirt off and give it to me now; he is that sort of friend. A big bear of a man, Sully plays bass and sings in a sweet Nashville tenor, one that Simon greatly admires. Sully tells me he wants to do Simon proud by being the kind of person Simon would be at a time like this. It is a common sentiment among those who gather at Sassafras. In this type of crisis, the person you most want around is Simon: strong, resourceful, constructive, positive. The kind of person who can be emotionally open and available without being crippled by those emotions.

“I know,” I say. “Damn Simon. Taking a nap when I need him most.”

“That’s the thing about Simon,” Sully says. “He always puts everyone’s needs before his own. He always thought first about you or Eli. Not himself, not his music.”

It strikes me then that Sully thinks I am guilty too. He doesn’t say it to hurt me, but I know Sully well enough, I know the life of a musician well enough, to know there is more than a hint of an accusation in this statement. Strangely, it does not increase my guilty feelings. For an instant, I see how ridiculous and self-centered my guilt is, how absurd. Simon is not, and has never been, a martyr. We made decisions
together
. Countless important life decisions and countless seemingly unimportant ones, like taking Tuesday off versus riding it out and reassessing come Friday. My guilt is useless and counterproductive. Indulgent, even. Perhaps I prefer to cultivate my guilt rather than confront my helplessness. Like Sully, I have to learn how to rise to this situation. Be as strong as Simon would be if our positions were reversed. Eat something. Get some sleep.

AT FOUR O’CLOCK
my mother, Marc and Lorna, Emily, Mike the day nurse, and I meet with Dr. Griesdale in the
ICU
conference room. Dr. Griesdale’s synopsis of this meeting includes the following statement:

They [the family] understand that Mr. Paradis may not survive & that if he does, his functional neurologic outcome remains uncertain. They asked many questions pertaining to progression of neurologic recovery which I am unable to answer. They appear to understand how very ill he is. I also explained the rationale for early fixation of his spine, but they understand the window for this may be closing. This will be answered tomorrow.