Fallen: A Trauma, a Marriage, and the Transformative Power of Music (18 page)

“I’m Simon,” he says, in his most assertive yet gracious voice, “And you are...?”

The way Simon handles these interactions impresses the hell out of me. He has to constantly assert his selfhood to medical workers who often defer their queries to me or his parents. As a previously physically strong, very physically present person, he now has to find that sense of selfhood without the use of his body. Since he is recovering from a head injury, he has to do this while in the process of reassembling himself. As someone who is suddenly utterly dependent on a stranger’s assistance for the most basic of bodily functions, he has to engage in these relationships from an oddly imbalanced interpersonal dynamic. And he does. Not only does he do it, he does it without anger or resentment, without complaint or shame or defensiveness. His “Si-ness,” which I had felt even from the depths of his coma, is immediately present when he awakes, independent of the physical functioning of his body. This, to me, is impressive—inspiring.

The word
inspiring
tends to be used in a vague, general way when the able-bodied comment on somebody with a disability, so I believe it is important to be precise: What impresses me is how effortlessly Simon’s sense of selfhood remains intact, independent of so many things we typically take for granted, and how effortlessly he asserts it when confronted by a medical system whose first introduction to him is with the label “traumatic brain injury patient.” Inspiration is located in a very precise moment—“I’m Simon, and you are...?”—and it convinces me, compels me, to work at being a better, stronger, more internally intact human being.

RETURNING TO SOLID
food is an agonizing process for Simon. He must undergo multiple “swallow” tests in which he takes small sips of food of various consistencies: pudding, a fruit puree, and thickened water, each colored with a blue dye. A few hours after the test, when Simon’s lungs are suctioned through the trach hole, blue dye colors the phlegm, indicating an inability to co-ordinate the complex acts of breathing and swallowing: every time he swallows, particles of the blue food and liquid are aspirated into his lungs. With this type of uncoordinated swallowing, choking and the development of pneumonia become potential hazards. Simon is not given clearance for solid food. He is starving and dehydrated, and when his hunger becomes overwhelming he drifts toward despondency. Eventually he is given a swallow test while being
X
-rayed and receives clearance for everything but liquids. It is a triumphant moment when he is able, finally, to dig into a tray of blended beef and peas, pureed pears, and a glass of “water”—a gelatinous lemon-infused monstrosity thickened with cornstarch.

As the days pass, there are small increases in movement in Simon’s left hand and fingers. His head can now easily roll toward the midline of his body. With difficulty, he practices tracking his eyes, but every time his line of vision passes to the left of midline, his vision doubles, even quadruples. Damage to the optic nerve, we are told—a permanent state. But days later, this too improves to the point of being a non-issue. A physiotherapy schedule is established. The physiotherapist, Brian, slides a mesh sling under Simon’s body and attaches it to a hook suspended from the ceiling; when a flip is switched, the sling hoists Simon into the air and Brian guides his body to the wheelchair the hospital has provided. Initially, the entire physio workout consists of Simon’s surviving this difficult transfer, holding his big head upright, and not falling asleep. Simon, despite the staggering challenges of navigating this situation, remains playful and positive. He gives Brian the nickname “Chuck” because of his passing resemblance to
UFC
fighter Chuck Liddell. After a few days, Simon has progressed to attempting some exercises in the physiotherapy room. His left arm is strapped onto a skateboard-like contraption, which he is asked to move in a figure-eight motion across a tabletop. He stares at the arm, sweat breaking out on his forehead, willing it to move.

Nothing happens.

He stares some more. Then, grinning, he reaches for his left forearm with his right hand and pushes the skateboard, which rolls an inch or two.

“Cheater!” Brian laughs.

“I’m trying, Chuck, I’m trying,” Simon says. “Don’t give up on me, man.”

SIMON IS CONSTANTLY
being assessed. He is—according to various therapists—too swift and impulsive when eating, gobbling a whole plate of food down in minutes. Cognitive tests indicate he has deficits in his executive functions, the more abstract and complex functions of the frontal lobes such as problem solving and short- and long-term planning. He is, perhaps, too cheerful and positive given his current situation. When an occupational therapist explains to Simon that the hospital will lend him an electric wheelchair until he has one of his own, he politely says no thanks.

“I prefer crutches over a wheelchair,” he adds—evidence of his general lack of awareness and acceptance of the severity of his injuries. But I see it also as a statement of his desire for independence. Of course he prefers crutches over a wheelchair. Who wouldn’t?

The doctors, nurses, and rehab health care workers we meet at the hospital are almost always professional, compassionate, and generous with their knowledge and skills, and they provide us with a wealth of information. Still, I often resent this atmosphere of constant assessment. Rationally, I know these assessments are necessary and are in Simon’s best interests; emotionally, they make me feel both enraged and defensive. I know, after years of working as an advocate for adults with various disabilities, how quickly a label can be applied and how limiting and self-fulfilling one can be. I know that these skilled and most often wonderful people are neither wrong nor ill intentioned. They are doing their job and they are doing it well, providing us with their reports, their recommendations, and handouts from various information resources. But it is my job to integrate that information into a larger perspective. Many of the assessments could, with a slight shift in focus, be reframed to reflect what Marc, Lorna, and I see in Simon: his humor and vitality. He has always wolfed down his meals. He isn’t necessarily impulsive; he is, as he says, fucking hungry.

I am not in denial about the severity of the injuries. His injuries are undeniable. But it seems unwise to rush headlong into naming and cataloging Simon’s “deficits” and preparing for a lifetime littered with various “compensations,” two words we are becoming all too familiar with. Unwise, even, to rush into facing everything all at once. The brilliant surgeons,
ICU
, and Step-Down staff have given this to Simon: a lifetime of learning how to accept and deal with his injuries. Dr. Griesdale had explained that three months was a likely timeframe for Simon to be in a coma. But although it feels like it’s been a lifetime, the accident happened less than one month ago. Simon doesn’t need to rush into anything; he is already way ahead of schedule.

I make a conscious decision not to worry about or obsessively evaluate his executive functions. Not yet, anyway. There are plenty of other, more pressing things to worry about. I worry about his elevated liver enzymes, spikes of fever, and dehydrated, collapsed veins. I worry about his description of his right ear: he says he can hear blood flowing through it but nothing else. And I worry about his left hand.

They are small miracles, human hands—no tool is more perfectly crafted for music, art, or love. A working left hand means, for Simon, the ability to fret the strings on his guitar. “Love the left” becomes my catchphrase as I work my fingers into his cold, swollen palm and clenched grip, channeling all my impotent worry, pouring whatever strength remains in my jittery and nervous soul into the small miracle of his left hand.

“WHO,” SIMON DEMANDS
as I settle into the cot beside him, “gave Lorna a book on brain injury?” It is early evening and his parents have left for the day.

“I gave her the Jill Bolte Taylor book,” I say. “And Sully and Patricia brought some type of head injury guidebook. British publication, I think.” Lorna has been running what she terms “classes” during the day, in an effort to push Simon to open up as many mental files as possible. It seems to me that most of these files—language, memory, spatial recognition—are opening on their own, but Lorna’s classes provide a lot of important stimulation for Simon, and she is the only one who has the energy to approach these activities in such a focused and directed way. Beside me, Simon groans with an aggrieved air of exhaustion.

“Why do you ask?” I say. “You okay?”

“I’m tired,” he says. “Lorna should never get ahold of medical books.”

“One book and she’s an expert, right?” Now that Simon is awake, we are all a little guilty of this, hastily cobbling together a Wikipedia medical degree, a modern phenomenon that must drive real doctors crazy.

“Well, then,” Simon snorts, “I think somebody must have given her a book on being a kooky-assed witch.”

I can’t help but laugh. It is Simon’s first expression of anger, and it contains his familiar bite. It is fitting that it is leveled at his mother, mothers being the safest place for children to lodge their disgruntled complaints about the inadequacies and stresses of the world. The person I would most like to share this flash of snarkiness with is his mother, because, of all of us, she is most worried that his manner is too easy-going, too accepting and complacent. It would be a relief to her to see a little anger or frustration on his part. But I worry at how she will receive his complaint. We are all fragile right now, and it might hurt her feelings. She and Marc have willingly joined Simon and me in this small, surreal fishbowl of medical trauma, and I know being here is of the upmost importance to her. I wonder if she sees, as I do, how much their continued presence means to Simon. How he absorbs every moment of his parents’ love and undivided attention, how it causes him to swell and settle and radiate a joy that is not childish but childlike in its purity. I decide it’s best for me not to interfere and say anything about his cranky outburst. Plus, I don’t want her classes to ease up or stop.

AUGUST 16

ON A SUNNY
Saturday afternoon, a “Bring Simon Home” benefit is held at the Roberts Creek Community Hall on the Sunshine Coast. The event is spearheaded by our friends Sue Lasby and Patricia Van Der Veen, though many, many people donate time, money, and services to make it happen. Local bands and musicians put together a full day’s lineup of music, and a silent auction is organized. Marc and Eli attend the event, and I send an open letter to our community thanking them for all their support—emotional, logistical, financial—which Guido reads out loud.

Marc breaks down and cries, overwhelmed by this public show of love for Simon. It is a difficult day for Eli too, difficult to see his normally steadfast grandfather cry. Difficult to talk to so many community members about what is happening at the hospital when what he wants, more than anything, is for it not to be happening at all. Difficult and yet also amazing, because as much as he wants to run away and hide, he is embraced and loved and held in place.

“That kind of love,” Lorna says when Marc returns to the hospital and gives us a full account of the day, “it shows what kind of person Simon is.”

“Yes,” Marc agrees, then adds, “But even more, it shows what kind of community the Sunshine Coast is.”

It is true: the Sunshine Coast is a remarkable place. The support of our community works through me in a profound and transformative way. The amount of money the community raises is significant and ultimately will help in so many critical ways over the coming year. But, even more importantly, what our community gives us at this time is hope: real hope for a future with choices. This is no small thing. At a time when my most negative internal monologue is focused on how bereft I am of the resources, both personal and material, to deal with loss and change of this magnitude, our community makes me feel as if we are the richest family in the world.

All Your Junk And Your Catalog Too

MY EARLY MEMORIES
of waking are patchy and jumbled. I was sleeping so much and so deeply that each time I woke, it felt like a new day, so events I recall as having taken place over the course of a week actually happened in a single twenty-four-hour period. Even though I am told that I had been asking questions about my legs and that the nature of the injury had been explained to me, the first moment I recall realizing that my legs were paralyzed was when two nurses were transferring me from my bed onto a stretcher. They manually rolled my body onto its side and placed a long wooden board under me and then slid me over to the stretcher. I saw the nurse at the bottom of the bed grab my legs and lift them but I felt nothing. They were legs that could have belonged to someone else. That’s the first time I remember consciously realizing that I was paralyzed.

I also vividly recall the first shower I had post-accident, at the end of my stay at Vancouver General. A hulking male attendant wheeled me into a roll-in shower, soaped me, and rinsed me down. The warm water felt great. Afterward, I thanked him for “washing all my junk.”

“No problem, man,” he said. “I washed all your junk and your catalog too.” To this day I still don’t know what a “catalog” refers to!

When you are in the hospital, what Kara referred to as “the indignities of the flesh” are the norm. People see you nude and vulnerable. They wash you and perform “bowel care,” which, no matter how kind and skilled the nurse, is exactly as invasive and scary as it sounds. You have to get used to strangers taking care of your body in a very intimate way. God bless ’em. It’s a very heavy job, that one.

WHEN SIMON’S LUNGS
no longer need constant suctioning, his cough reflex is strong, and his breathing is deep and regular, a duo of doctors arrives in his room to perform a decannulation, removing the trach tube from Simon’s windpipe. The hole in his throat is covered with a simple gauze bandage; it is a wound, one of the doctors explains, that, for the majority of people, closes up and heals with almost magical speed. After this, the move to
GF
Strong happens very quickly. A bed is available there, so the rehab doctor returns to
VGH
to reassess Simon. There are concerns that Simon’s health is not yet strong enough for the rigors of rehab. He cannot tolerate being in an upright position for more than half an hour, and his
IV
antibiotics have only just ended. But this interview is much different from the first one. The rehab doctor asks Simon only one question: