Fallen: A Trauma, a Marriage, and the Transformative Power of Music (24 page)

SEPTEMBER 14

“I came back.”

His eyes were wildly bright when he said that. He was asleep when I first came into his room with Mom and Dad and I was moved to tears by the sight of him: clean-shaven face, hair on his head, mouth dropped open in the classic Paradis sleeping pose—utterly himself. Then his eyes opened and he said, “Hey, Em.” I leaned over his bed and we hugged. When I stood up, that’s when he said, “I came back,” with that kind of frozen-cheeked jester smile people get on acid.

“
Thanks,” I replied. “I appreciate it.” Also smiling.

“So does Kara,” he said. “I traveled through time and space to come back so I could be with her.”

It took me some time to get used to his new rhythms. A new flatness, hollowness, in his voice—maybe due to the hearing loss? A new intensity, earnestness. Sincere abandon in laughter. Touching honesty about his hopes and wishes, like breaking a silence or entering a conversation with “I’m really hoping my legs come back.” He’s really hoping his legs come back. Altogether it’s a new vulnerability. Of course he’s vulnerable—broken, legless, dizzy, wearing diapers, exhausted. But it’s something else too. His wit is as quick as ever and he sees beneath what’s going on just as penetratingly as before. But there is some meta level of his old thought—a fortress of his thinking about his thoughts about your thoughts about his thoughts—that’s quiet right now. In its place, an expanse of compassion.

THE NEXT DAY
is game time, Simon’s first day trip outside of his daily rehab routine. Arrangements have been made to meet Emily and Sarah at the park not far from
GF
Strong where Eli’s soccer team is playing a match. I have purchased a bike helmet for Simon and preordered a wheelchair-accessible taxi. Simon doesn’t appear nervous, just eager to get to the game, so I am surprised to find he is silently crying when I join him and Lorna in front of the nurses’ station.

“What is it?” I ask. “Are you worried about the game? Are you worried about seeing everyone?”

“No, no,” Simon says, his green eyes veiled with tears. “I just want my legs back and I don’t know. I don’t know if it’s going to happen.” He brushes his right hand across his face. “The taxi is waiting.” Tears gone, he smiles. “Let’s go see a soccer game.”

The team manager, Cam, a big-hearted curmudgeon who for years has done the thankless work of ordering uniforms, retrieving soccer balls, and keeping errant boys in line, is the first to meet us, his familiar gruffness a good cover for the tears I see sparkling in the corner of his eyes. He helps us navigate the electric wheelchair over the bumpy sidewalk to a spot on the sideline with a clear view of the soccer pitch. The wind picks up and the cold rain falls with greater determination. Cam rushes off to his truck to exchange my useless little umbrella for a big green canopy to cover Simon.

Emily and Sarah arrive. Sarah, a comedy show producer, was at
GF
Strong the day before, but I missed her. This is the first time I have seen her since Si’s accident, and I too burst into spontaneous and extravagant tears when she hugs me. When I finally look up from her soft, round shoulder, the entire team is lined up, and one by one the boys shake Simon’s hand with a solemnity and respect that completely undoes me. We’ve known these boys since elementary school, and I have never seen them more serious or beautiful. I hang back and lean into Sarah’s embrace, not wanting to spoil this moment for Simon with more tears. The boys dedicate the match to Simon and then go out and play the most exceptional game of soccer ever. In a tight, highly competitive league where most games are, as Simon would say, wars of attrition and end in only a goal or two being scored, this game is outstanding. Simon has no problem concentrating or following the complex action. When a speeding ball veers toward him, Cam throws himself in front of Si’s chair. Despite the cold and the rain and the rocky terrain, Simon navigates the day without any significant complications.

The final score is 9–0 and doesn’t include the two disallowed goals on weak off-side calls. Eli and his co-captain, Nate, lead the team in an inspired game. Eleven times they hit the soccer ball into the net for Simon.

We all return to
GF
Strong for an impromptu family reunion. Eli changes out of his mud-soaked uniform into cozy sweats, and he and his grandfather go on a foray for takeout; they pick up burgers and fries for all of us except Emily, who has sushi. The evening is cut short when she starts puking.

“Sorry, Si,” she says, as she gives him a shaky hug, her face a clammy leaden hue. “Our flight leaves first thing in the morning, so this is good-bye. Sarah and I will bring the kids to visit. Soon. When you are ready for us.”

“Love ya, Em.”

“I love you too.”

SEPTEMBER 22

SIMON WAKES THIS
morning so tired he is on the verge of tears.

“I don’t know if I can do it. I don’t know if I can get up today. I might throw up.” His fatigue is excruciating. And it is impossible to get what he most needs—a full night’s sleep. “The nurses wake me up every four hours to catheterize,” he explains. “Between that, the pain, and Danny’s
TV
, I can’t get to sleep. I know he can’t sleep either, but who watches
Friends
at midnight!? I fucking hate laugh tracks.”

“You could talk to Danny,” I say.

“I know, I did. He’s a good kid. And the nights are hard. I know when I can’t sleep, I feel alone and scared, distant from everything I love. It’s a cold wind blowing straight through my heart when you’re not here. But... At least I have the mornings to look forward to.” His lopsided smile is resigned. “Except for this morning. I am so fucking tired I don’t know how I’ll face Sean.”

The day does not get any easier. During the physio session Simon’s condom catheter slips off, urine staining his sweatpants and wetting the exercise plinth. Sean is relaxed, philosophical (“Don’t worry, man. Go back to your room and get changed. We’ll pick up where we left off tomorrow”), but Simon is devastated. So upset he can barely speak.

“It’s a drag” is all I can think to say, trying to convey in that overused phrase both acknowledgment of the enormity of Simon’s emotions (anger, humiliation, exhaustion, despair) and the mundane, practical reality we have no choice but to embrace: equipment failures are likely going to be a part of our life and, as much as possible, we have to deal with them without shame or apology.

Simon doesn’t want to talk about it. He wants to be dry and clean. After the long, difficult process of changing out of his sweatpants is over, he asks me to pass him the guitar. He strums the chords to “Hickory Wind,” singing along. He has yet to be able to sing it without breaking down on the third verse and once again when he arrives at those lyrics—“It’s a hard way to find out that trouble is real / in a faraway city with a faraway feel”—he is overcome with emotion.

“What is it?” I ask.

“Those lines. They just slay me. It’s the way I feel,” he says. “The loneliness. At night, when you’re not here. Like my mind is teetering on the edge of something too big and too lonely to even understand let alone try and explain.”

We are interrupted by the appearance of Richard at the door of Simon’s room. He takes one look at our sad and disheveled faces and puts his hands on his hips. “Well. You two. I have some good news. Simon, your heparin medication has been canceled and, as soon as your head sore heals up, we can schedule the skull replacement surgery.”

We celebrate this news by agreeing Simon should have dinner in bed—a frowned-upon indulgence in rehab—just this once. We eat fruit salad and watch the season’s first exhibition game of hockey. The Canucks, fronting a rookie team, win in 4–3 shoot-out.

The following day, Melissa, the
OT
, requests that I join Simon for his occupational therapy session, and when we arrive at the big gym, she apologizes.

“I hate to do this to you guys,” she says, “but we have to go through the pressure sore material.”

“Christopher Reeve died of complications from a pressure sore,” Simon says as Melissa opens up her reference manual. This piece of information is often traded in conversations at the cafeteria, and the message is clear: pressure sores are kryptonite to a person living with a spinal cord injury.

“They can be really serious,” Melissa says. She explains that while a sore may look small at the surface, it may be much larger underneath. She uses the analogy of an iceberg. Pressure starts at the level of the bone, where it forms a base; what you see on the skin is only the tip. She shows us a stage one pressure sore: a dark red blotch of unbroken skin. At stage two, the skin has broken into a small, raw blister. The stage three picture shows a deep crater of mushy, ulcerous tissue.

“That’s worse than the pictures on smoke packs,” Simon says.

“It gets worse,” Melissa says. “I’m sorry, guys.”

At stage four, the wound is so deep and open that the underlying bone is visible. Stage four is a horror show of pictures of gaping, puckered holes and blackened dead tissue that parades on until Simon says he has had enough.

“Look, I’m doing a seat lift,” he says. Melissa has coached him to shift his weight in the chair throughout the day to relieve pressure.

“Do it every few minutes,” she says.

“How about every minute?” Simon presses his hands onto his wheels and lifts his bottom again.

“Even better,” Melissa says, then reviews the places on the body that are at the most risk for pressure buildup: the tailbone, hips, sit-bones, and heels. She gives Simon a long-handled mirror designed so that he can lie on his side and view the vulnerable skin on his butt. She instructs him to check twice daily, morning and night.

“Prevention is ultimately much easier than healing a wound,” she says. “Sometimes they can get so bad surgery is required.”

“You must have seen some bad sores in your travels,” I say. Before working at
GF
Strong, Melissa had traveled with a rehab team to areas of India where people living with spinal cord injuries have little money or access to the types of resources available to Simon.

“Oh yes,” she says. Her face momentarily crumples in recollection before her usual bright-eyed smile returns. “Honestly, you don’t want to know.”

OCTOBER 1

Yesterday I left the Willow St. apartment. Sad, a little, to leave its white saneness. I stayed at the Easter Seal house last night which was loud and not very comfortable—but relatively inexpensive, and I’m not sure where I’ll be sleeping tonight. I feel dislocated. Homeless.

In the morning, we had a meeting with Gayle, the sex therapist, who wore a long silk scarf. Typical, I thought, although what do I know? I’ve never met a sex therapist before. She had an in-your-face sex-positive frankness that was annoying at first but, really, she was charming and informative and very quickly succeeded in wearing down the resistance of my inner prude, the part of me that resented having to sit down with a stranger and talk about our sex life. I now know more about the penis and erections than I could have ever anticipated. Once again we are told that every injury and every body is different. People with higher-up injuries might experience “reflex erections” (the penis becoming erect through the slightest touch, even in a nonsexual context), while people with lower injuries might have mental erections, mild arousal by the thinking of sexy thoughts. Your injury, at L1, is right in the middle, the place where the spinal cord transitions from a unified whole into the “cauda equina,” or horse’s tail of separate nerves. You might experience either type of erection, Gayle explained, or neither.

So far, you said, pursing your lips, it’s neither.

In any case, any type of erection is either created or maintained with the use of a pill, pump, or injection, and it is unlikely, unless there is further mechanical intervention, that it will end in any type of ejaculation. Pills or pumps, Gayle said, should work for you. Some experimentation might be needed. The phrase “use it or lose it” applies here, she said. What’s the point of an erection, I wanted to say, if you can’t feel it? But I don’t. That’s something I guess we’ll have to figure out on our own. Besides, I can almost 100 percent sure predict she would have said something true, but nonetheless outrageously infuriating, about the brain being the biggest and best sex organ of the body.

Gayle only crossed a line one time—when she told us that some couples report having a BETTER sex life after a severe spinal cord injury—but I think she knew that was a ridiculous statement to make even before she got to the end of the sentence. You and I just stared at her incredulously. “Hmm,” you said, a universe of pained disbelief contained in that single utterance. She gave us both “homework”: you, think dirty thoughts; me, take time for myself—get a massage, eat well, read a book.

Later in the afternoon, Sean took you into the pool for the first time. Your smile, in the water, was saintly, but your mother worried you seemed too childlike.

SINCE THE MIDDLE
of September, the newspaper headlines have heralded the decline of the economy, with news of the disintegration of the Lehman Brothers, the largest ever corporate bankruptcy in
U.S.
history; of Wall Street meltdowns and world market collapses. I, determinedly oblivious to this financial apocalypse, make an offer on the Cooper Street house.

OUR FRIENDS STEVE
and Nikki give me a key to their city apartment, an attic space I fall in love with. I imagine a starving nineteenth-century artist writing or painting here in romantic, picturesque poverty, complete with porridge and lentil stew, becoming famous only after dying of consumption. It’s mine every night of the week except for Tuesdays, when I will share it with Steve and Nikki while they are in Vancouver to take yoga and sculpting classes.

Tonight, though, Simon and I sleep together in the Livingroom for the first time. The Livingroom is a private space on the second floor of
GF
Strong where couples can book a night together. The purpose, at least in our case, is more practical than romantic, as it gives us a safe place to practice managing Simon’s physical care without nursing support. Although its name implies a haven of coziness, I am disappointed to discover that it is no more than an oversized hospital room with a private bathroom and a double bed.