Fallen: A Trauma, a Marriage, and the Transformative Power of Music (21 page)

Simon’s sense of smell is gone. His right ear is gone. A piece of his temporal lobe, gone. His legs. Gone. I hate the word
permanent
. I start to shake.

“I do not want to make any predictions about what Simon is capable of doing in rehab, but, given the severity of his injuries, he will most likely qualify for the full 90 percent.” Janet smiles, kindly. “Several times over, actually—with the loss of his legs, the loss of sexual function. It is a long process before all this is actually confirmed, so nothing is guaranteed, but I want to give you as accurate a picture as I can.”

Simon’s parents are relieved when I return and outline what Janet has told me. Part of me is relieved too. Ninety percent of Simon’s current salary is a workable amount of money. Significantly less, yes, without Simon’s extra gig money and my income, but I can run the household on that amount, at least temporarily. But the relief I feel is distant, abstract, a pale beacon in the cold fog that has filled me since my talk with Janet. I don’t blame her. She handled a difficult situation with sensitivity. But it is horrible. Awful. This breaking up of Simon’s body parts into an income percentage, a morbid living dissection. Our current financial relief bought by his ability to take a piss, have a dump, get an erection. Has Simon lost his sexual function? What is sexual function or pleasure without sensation? What would that mean to him? To me? To us? These are questions too big and messy for either of us to face at the moment, so I torment myself with the idea that each body part is worth a certain amount of money. What would you pay for a right ear? A left hand? A penis with the ability, once more, to ejaculate?

Many would categorize
SCI
as one of the greatest survivable catastrophes experienced by a human being.
—
RICK HANSEN INSTITUTE

AS SIMON ENTERS
into his rehab program, the focus for him is on his spinal cord injury. Once again there is a very sharp learning curve as we gather and process information. This includes learning the acronyms of spinal cord injury, or SCI. An injury is classified according to two related measures: whether it is a complete or an incomplete injury and where it ranks on the American Spinal Injury Association, or
ASIA
, scale.

The spinal cord is the multilane pathway that connects the central nervous system with the rest of the body, channeling the world of sensation from our feet and fingertips to our brain, and the brain’s subsequent commands back to the feet and fingertips, in a continual loop. Bony vertebrae surround the spinal cord and provide a sturdy shelter. The spinal cord itself is continuous with the brain stem and, like the brain, is surrounded by three layers of protective tissue: the dura mater, arachnoid mater, and pia mater. In opposition to the organization of the brain, the spinal cord has an inner core of gray matter and an exterior composed of myelinated white matter. It is the level of damage sustained by the spinal cord—not by the vertebrae—that indicates the level of injury. Most often, damage to the spinal cord occurs when it is squeezed, pinched, or bruised, injuries that are further complicated by swelling or a decrease in blood flow to the injured area. This type of spinal cord trauma constitutes an incomplete injury, and although initially these injuries often present as full paralysis, there is the potential—especially with the dramatic improvement over the last twenty years in acute care and rehab for spinal cord injuries—that some recovery of motor function and/or sensation can occur. A smaller percentage of spinal cord injuries occur when the cord is entirely, or almost entirely, severed, as is the case for Simon. This type of injury is classified as a complete injury.

An
ASIA A
, or complete injury, means there is no movement or sensation below the level of injury. In an
ASIA B
injury, there is some sensation but no motor function. For an
ASIA C
, there is both sensation and motor function below the injury, and this only increases for an
ASIA D
. The farther into the alphabet you are, the more hope there is for some recovery while a complete injury equals almost no hope for any significant change to occur. Generally, rehab for a complete injury is geared not toward healing the injury but toward learning to live with it.

Simon was classified as an
ASIA A
, complete injury, at the time of his spinal cord operation, but because he was in a coma, none of the typical exams could be performed. Now he has whispers of sensation in his right hip flexor, which is, technically, below his level of injury.

“The doctor thinks it might be possible I’m an
ASIA B
,” Simon tells Sean.

“You’re an
ASIA A
floppy para all the way,” Sean says. “Sorry, man.”

“Fuck,” Simon says, smiling. “You know I never wanted to get a
D
so badly in my life.”

Both Simon and I rely on Sean’s no-bullshit approach. The reality is that, with the head injury complicating his recovery, Simon will have difficulty reaching even the basic level of mobility and independence that someone with only his level of spinal cord injury could achieve. It also becomes apparent as Simon and I meet his fellow
GF
rehabbers that a classification of an incomplete injury can be a mixed blessing. Often when people with an incomplete injury are up and walking they are, to the world at large, perceived as “healed.” But for many of them some of the more devastating effects of a spinal cord injury—the bowel, bladder, and sexual dysfunction, the debilitating neuropathic pain, and the fatigue—remain but are invisible to the outside world. Often, for those with a diagnosis of an incomplete spinal cord injury, hope traps them in an uncertain, seemingly unending, and extremely challenging rehab regime. In the cafeteria one day, we meet a young man, a mid thoracic complete injury paraplegic, who sums up the contradiction beautifully.

“When I arrived here, there were other patients on the spine ward in electric chairs with no movement at all and I felt like I was so much better off. Three months later, some of them are walking out of here. It’s hard not to feel a little jealous. But in a lot of ways, I’m glad I’m a complete injury. There’s nothing I can do about that,” he says, “which means I can focus on the things I
can
do something about.”

Still, Simon cannot quite yet accept the prospect of no hope. Although I have clearly outlined the doctors’ diagnosis of a complete spinal cord injury, it is inconceivable to him that his legs will not heal. And there is no shortage of well-intentioned but ultimately misguided visitors who want to share the inspiring story of a friend of a friend who was told he would never walk again but who, three months later—three months!—is running marathons. When Simon asks me, as he does randomly and often, what I think will happen with his legs, I don’t know what to say. When Simon was in the
ICU
, I reckoned with the fact that there would be little room for improvement with the spinal cord injury. Legs schmegs, I said, just give us his brain back, and I meant it. But I also believe that how healing is approached can potentially affect the outcome. And—maybe—I’m hoping too, blindly and unreasonably, that there is still a little more injury-defying magic left in Simon’s body.

So I can’t say “Simon, you will walk—I know you can.” But, even after reminding him of the doctors’ predictions, I also can’t say “No, you will never walk again.” I say the only honest thing I can: I don’t know. I don’t know what your body is capable of. I don’t know what the future of medical research will bring. I don’t know. But for now, let’s commit to continued healing.

LORNA AND I
return to the coast to go house hunting. I am haunted by Simon’s absence. For the past three years, buying a house has been a central preoccupation for us. We saved a down payment nest egg in our retirement accounts, but in the prohibitively expensive West Coast market, our meager savings couldn’t buy much. We looked seriously at one place in the springtime: a beautiful heritage home on the outside, a structural mess inside. With that last disappointment, Simon and I decided our best course of action was to buy and pay off a piece of land while remaining in our wonderful little Hobbit house with its exceptionally reasonable rent and then, eventually, take out a loan to build our dream house. For his birthday, I bought him a book on innovative architecture that incorporated alternative, off-the-grid energy sources. We spent cold spring evenings by the fire pawing through the pages, trying to better understand the difference between passive and active energy systems and discussing the feasibility of wind turbines, geothermal energy, solar panels.

Still, even without Simon, it is a pleasure to have a day away from
GF
Strong imagining a potential future in the various houses Lorna and I look at. With the promise of financial support from Simon’s family, Lorna and I create a list of houses, all bigger and better than anything Simon and I viewed before. There are several promising options, but it is Lorna’s last-minute addition to the list that we fall in love with. Newly built, the house has a beautiful wood finish and gorgeous windows, an open concept that incorporates a raised hull-shaped ceiling, an intelligent, streamlined design with magnificent built-in shelves and cupboards. Even though it is at least a forty-minute drive away from our Halfmoon Bay neighborhood, it is simple and elegant, a gazillion times nicer than any other house we see that day. I worry that it is too expensive but, swayed by Lorna’s insistent enthusiasm, put an offer in that evening.

The next day, Simon and I travel by transport van out to
UBC
for a
CT
scan. Everything goes smoothly until it is time to return to
GF
Strong. The driver who arrives to pick up Simon is cross and miserable, loudly complaining about his wife, children, and grandchildren as he tries, and fails, to lock Simon’s chair in properly. I sit in the front seat listening. As the driver bitches and Simon makes polite and helpful suggestions, a sudden and unexpected spasm, a hailstorm of fury, crystalline and pure, rolls through me. I hate this complaining man. I hate WorkSafe
BC
for performing a cost analysis of Simon’s injuries. I hate the thought of buying a house without his seeing it. I hate the new house for being something we could never have previously afforded. I hate the new house for what it has cost Simon. For what it has cost all of us. As the driver leaves to retrieve a second passenger, I start to cry.

It is the first time since his accident that I have cried in front of Simon, and it upsets him. I bend down, apologizing, and properly secure the wheelchair locks, for the moment beyond exhaustion and unable to stop the landslide of tears.

The next day Wilhelm is moved to a new room, and Simon’s new roommate, a seventeen-year-old boy named Danny, arrives. Neither Simon nor I have a chance to say good-bye to Wilhelm, but he appears later that day, silent as ever, to execute his regular evening routine in this more familiar room. As he turns on the tap of the sink at the foot of the beds and watches the water run, my cell phone rings. It is the realtor; the sellers have countered my offer with a new asking price. I decline it and, although Lorna and I return a few times more to view it, we make no further offers on that beautiful house.

I RECOGNIZE DANNY
, Simon’s new roommate, from the hallways of the spinal cord ward at
VGH
. I saw him dressed in the same white
TED
stockings and blue shorts that Simon wore there, being wheeled around by his family. Mother, father, a younger brother, no more than fourteen, glued to the armrest of the wheelchair where his big brother’s hand lay motionless.

Danny is a year older than Eli. Seventeen. His spinal cord injury is a high one, and he does not have the use of his hands or arms. He is tall and impossibly thin after his hospital stay, and his golden mane of hair looks to be the heaviest part of him. Well-spoken and poised, especially given his current situation, he is a fair-skinned beauty who I am certain sets teenage girls’ hearts aflutter. His parents and younger brother visit, along with his dog, but they live out of town and can’t be there every day. Unlike many of the people at
GF
Strong, Danny has no insurance claim helping to defray the cost. His mom and dad have to work, and in their absence, and Eli’s, Simon and I, parents to the core, worry about him—secretly, when he is out of the room at his own physio sessions.

“Look at that,” Simon says, pointing to the mini-fridge that Danny’s friends have left on his side of the room. It is stocked with Snapple and chocolate puddings. “He eats like a hummingbird. He’ll never gain any weight back.”

“His mom brought him homemade soup yesterday,” I say. “That’s exactly what he needs. Something warm.”

Danny has a hard time falling asleep at night and a hard time waking up in the morning. The nurses who feed him breakfast in the morning have a tendency to scold him about this, to transform from professional health care providers into overworked and vexed mothers as they ladle runny porridge into his unwilling mouth. He, in turn, is sometimes argumentative with them. On the other side of the curtain, Simon and I listen, our hearts breaking. We know this young man. We know this boy. He could be Eli or any one of his friends. We have made him pancakes on Saturday morning, driven him home wet and tired from soccer practice, picked him up from that party—you know that party, the one where the parents remained behind closed doors on the second floor and everyone had their first beer. Turned the music up a little too loud. Danced with something resembling your soul at stake. Stole sweaty kisses in dark corners. Came home, every atom still dancing, jubilant, knowing you would never be tired again. That party.

DURING THE FIRST
week of September, I sit down with Simon’s rehab doctor, Dr. Yao, to discuss the results of Simon’s latest
CT
scan.

Extensive encephalomalacic changes are present in both frontal lobes, worse on the left than on the right, which has progressed since the prior study with resultant sulcal widening. Post-traumatic tissue loss in the middle cranial fossa is present and has evolved in appearance in an expected manner.