Fallen: A Trauma, a Marriage, and the Transformative Power of Music (30 page)

“It looks like the pressure sore on my heel, doesn’t it?” Simon asks.

I agree, and even though it is Sunday night I leave a message at the office of the very amiable and approachable podiatrist. “Simon’s right toe isn’t healing. I think we need to see you as soon as possible.”

But in the morning the blackness on the toe has continued to grow; the whole round tip is mushy with pus. And it continues to grow at an alarming rate, doubling in size by the time we reach the ER, and smelling sickly sweet, like rotted fruit.

“It’s necrotic,” the surgeon tells Simon. “We’ll have to admit you. I’ll try and save the toe.”

Simon is in the hospital for a week, and everything is so terrible it is almost funny. Almost. First there is the diagnosis: a superbug
MRSA
infection in the toe, which will require twice-daily doses of the end-of-the-line intravenous antibiotic vancomycin for six weeks to two months. Second there is the accessibility, or lack of it, in our local hospital. Not a single washroom in the rooms on the ward is wheelchair accessible, meaning that Simon must perform his daily constitutional in a commode chair in the middle of the room. As in interim housing, this setup does not allow Simon to be fully independent: he once again needs assistance to get through his morning routine. Third, the mid-August weather, as if in accordance with our mood, turns unseasonably bleak; an early autumn chill descends, and the clouds lower and grow heavy, as if at any moment they might fall from the sky and cover us in a suffocating blanket. Our new home is drafty, cold, and lonely when I return in the evening without Simon.

We push to have Simon discharged early, but there are logistical problems. He needs the antibiotics twice a day, precisely twelve hours apart, a process that takes two hours each time. It is not reasonable either for Simon to remain hospitalized or for us to visit the acute care unit twice a day for the next two months. So the surgeon puts a
PICC
(peripherally inserted central catheter) line into Simon’s upper right arm that leads straight to his heart, and I am taught how to hook up the
IV
antibiotics. We return home with a bag full of vancomycin, an
IV
stand, a box full of medical supplies, and, at least for the moment, Simon’s toe intact. Simon is giddy with relief to be home, but I am unnerved by the prospect of living with an invisible superbug, especially when Simon has an open portal from his arm straight to his heart. I spend my days scrubbing: hands, sinks, door handles, Simon’s shoes.

THIS SUMMER MARKS
the last year Eli will be eligible to play in the annual Chilliwack soccer tournament. As we approach the end of August, Simon reminds me of the promise I made last year.

“We have to go,” he says.

I agree, but the idea of traveling to Chilliwack is daunting. Because Simon’s health is so precarious, we arrange for Eli to travel with his best friend, Jesse, and, despite my reservations, I go ahead and book a room at a Cozy Court, the only accessible room I can find. I release some of my neurotic exhaust by calling the hotel several times to clarify how the rooms are set up.

“There are grab bars by the toilet, right?” I ask. “On both sides?”

This time last year, getting to Chilliwack was an impossibility. This year, we can do it. When I find myself overwhelmed with doubt about the wisdom of making the trip, I repeat this phrase over and over, like the Little Engine That Could:
wecandoitwecandoitwecandoit
. But right from the start, nothing goes well. The day before we are to leave is my fortieth birthday, and that morning Simon wakes me up with shocking news.

“There’s blood in the bed,” he says, pushing himself into an upright position. “Oh. Oh no. The
PICC
line has come out. I must have snagged it in my sleep.”

As I get up to investigate the bright red stain spreading across our white sheets, Simon starts to breath rapidly. “I feel dizzy,” he says, his skin pasty. “Light-headed. Like I might pass out.”

I rush for the phone to dial 911, recalling the nurse’s words when the
PICC
line was inserted: if Simon felt light-headed or short of breath, we should get medical help immediately. By the time the ambulance arrives, Simon’s breath has returned to normal and I have realized that the blood stain, while dramatic-looking, does not constitute a large amount of lost blood. Embarrassed, I apologize to the ambulance attendants who arrive.

“If you are questioning whether you should call an ambulance or not, then it’s a good idea to call,” the female attendant says, smiling. “I’m only glad it’s not more serious.” They give Simon a thorough check and okay him to proceed with his morning routine at home. He and I drive to the hospital just before lunch to meet with the surgeon.

“We’re lucky,” the surgeon says pointing to the small cap on the line that is threaded into the heart. “It’s still intact. If it had come loose when the line came out, we’d be calling a vascular specialist right now.” He would like to insert another line, this time in Simon’s left arm, but if he does this, we can’t go to Chilliwack, as Simon will have to return to the hospital twenty-four hours later for a checkup. We compromise by making an appointment for Monday to have the
PICC
line inserted, and a nurse puts in a temporary butterfly line into Simon’s forearm. Once again we leave the hospital with our bags of
IV
vancomycin and a box of supplies, as well as a stamped letter attesting to the fact that Simon’s
IV
line is for therapeutic—not recreational—drug use, just in case we end up in another ER.

We leave for Chilliwack early on Saturday morning and have just enough time to check in to our hotel before Eli’s first game. “Oh,” the desk clerk says when she sees Simon’s wheelchair, “I just filled the accessible room.”

“What?” I am aghast. “I called you guys, like, four times to confirm we had an accessible room and to ask you specific questions about the setup.”

“Well, you could just use a regular room, right? The wheelchair would just have to enter from the patio doors.”

“Can the wheelchair get in the bathroom? Are there grab bars on the walls?” It is unusual for me to yell—throughout our relationship Simon has usually taken on that job—but I am straight-up shouting. “Look. We have just traveled more than five hours and we have nowhere else to go. We need that room. We need it tonight.”

Yelling, as I’m sure most yellers would attest, proves a very effective method of getting what you want. The desk clerk places a call to the newly checked-in inhabitants of the accessible room. Elderly and slow-moving but not disabled, they readily agree to switch. As I unpack our car, my back, tight and achy since I called the ambulance the day before, suddenly starts to spasm so fiercely I can barely straighten up enough to drive to the soccer pitch. I hold onto the back of Simon’s wheelchair and try to stretch it out as the ref’s whistle announces the start of the game and the red versus white jerseys thunder past, feet flying and torsos twisting as the kids, agile as gazelles, leap into the air for headers. It is a new team for Eli this year, and the players are not yet accustomed to working with one another. The afternoon matches go poorly. They lose 5–1 in their first game and are shut out 3–0 in the next. When the games are over, it is too late for Simon and me to join the team for the annual meal at Earls. I give Eli money for dinner, and he leaves with Jesse and his father, while Simon and I return to the hotel to start his medication.

The
IV
stand didn’t fit in the car, so I rig up the bag of vancomycin on a coat hanger and hook it over the shower curtain rod, but when I connect the
IV
nothing works. Simon has blown the vein transferring in and out of the car. I get directions to the hospital from the front desk and we leave, my back complaining loudly as I dismantle Simon’s wheelchair so that it fits in the trunk. The ER waiting room is packed, mostly with people in various states of inebriation, and a posted sign states that the expected wait time is four hours. Shortly after we arrive, a very large, very drunk man stumbles into the waiting room holding a hot dog. He lies down across the three remaining seats, places his hot dog beside him on the tiled floor, and falls asleep.

“I hope he’s not planning on eating that when he wakes up,” Simon says. He is genuinely worried. “Someone has got to stop him from eating that hot dog. It’s not sanitary.”

An hour later, a drunken scuffle over a missing cigarette lighter breaks out beside us in the waiting room. Simon turns to me, eyes glassy, and says, “This might be the worst night of my life.”

“That’s saying a lot,” I say, “considering the year you’ve just had.” I have to do something. When a nurse opens the locked door to call the next patient in, I barge into the treatment rooms.

“He doesn’t need to see a doctor,” I say. “We just need a nurse to set up the butterfly line. He needs to get on his meds; we’re already two hours past when he should have started. I have a letter.” I brandish the signed note from our hospital and, thankfully, this works: a nurse leads us into a treatment room and finds a new vein.

It is after eleven o’clock when we return to the hotel room. As I once more attempt to set up the
IV
, I realize with dismay that the butterfly line attachment from the Chilliwack
ER
is completely different from the one used by our hospital. Try as I might, I cannot figure out how it works. The vancomycin has to slowly drip into Simon’s veins, and I worry that if I do something wrong, the liquid will rush into his system and cause a toxic reaction. I call the hospital, and the nurse we saw tries to walk me through the process. But my nerves have gotten the best of me, and I am so terrified that I will do something wrong that I can do nothing at all.

“Can you come back in?” the nurse asks. “I’ll walk you through it.”

And so I leave Simon in the hotel room and return once more to the hospital, where the kind nurse gives me a tutorial in butterfly
IV
s.

“Got it?” he asks.

I nod. It is a totally straightforward process, and I am embarrassed that I couldn’t figure it out back at the hotel room.

“Don’t worry,” the nurse says. “It’s not so easy when you’ve never done it before.”

It is close to one when I limp back into the hotel room. I get the drip started, finally, as Simon, weepy with exhaustion, droops in his chair. To pass the two hours needed to safely drip the vancomycin into his bloodstream, we discuss the feasibility of a reality show that visits the
ER
s of towns across Canada at twelve o’clock on a Saturday night.

“You could learn a lot about a town that way,” Simon says.

“An extreme reality show?” I say. “Or extreme unreality?”

“Lord,” Simon says, driven to uncharacteristic religiosity, “please let me make it through this night.”

A lot of Robaxacet, a brief sleep, and two more hours of the vancomycin drip later, we return to Eli’s soccer games. It is another frustrating day on the pitch. Eli’s team ties one game but loses the next two. Simon and I leave Chilliwack just before the final quarter of the last game. Emily calls as we arrive home, and Simon and I regale her with all the gory details of our trip. Now that it is over, it seems both epic and comic in its awfulness. Home, finally, our exhaustion dissipates into something closer to triumph than tragedy.

“By the way, happy birthday, Stan,” Emily says.

“If there ever was a weekend that could embody how the downside of forty should feel,” I say, “this was it: bad back, blood in the bed, an unholy trinity of trips to the ER.”

“Oh, guys,” she says. “I’m so sorry it was that horrendous.”

“It sucked from top to bottom,” I say. “But we did it. I’m so glad we did it.”

SIMON’S HEALTH ISSUES
dominate our life through the fall. Twice daily we repeat the time-consuming vancomycin and toe wound care routine. Almost daily there are medical appointments: bloodwork and bone scans, visits with our
GP
, the surgeon, or a wound care nurse. Almost every other week there is a visit to the ER: even on the vancomycin, Simon continues to get infections in his urinary tract, and every hint of a fever sends us scuttling to the hospital. Simon jokes that I am putting in my practicum hours as an URN, an unregistered nurse, but I do not feel very competent. I desperately mistrust my ability to read the severity of what is happening medically. I knew, for example, that Simon’s right toe was not healing as quickly as the left, but still, I thought it was all under control. Conversely, I panicked when the
PICC
line came out and when I was setting up the
IV
in the hotel room. The presence of a superbug completely undermines my ability to accurately gauge what a situation requires. The round of vancomycin ends the second week of October, but by November the infection in Simon’s toe has returned. More vancomycin, the surgeon tells us. This time for twice as long.

“You’re kidding me, right?” Simon says. “There’s got to be another option.”

The surgeon takes in our hostile faces, both of us reacting as if
MRSA
is something he personally cooked up for the sole purpose of torturing us.

“I’m on your side, guys,” he says. “You know that, right?”

We leave his office and stop at the grocery store to pick up dinner supplies. Simon stops wheeling and rolls to a halt by the coffee grinder.

“If this is it. If this is my life—infection, vanco, more infection, more vanco,” he says, looking up at me, “I have to wonder why? Why would the doctors work so hard to save me, if this is it?”

“Oh, Beau,” I say as we slowly start back down the aisle.

“I’m sorry, Stan,” he says. “I know that’s not what you need to hear.”

“It’s okay,” I say. “I get it.” I remind him of Bill, a guy we met briefly at
GF
Strong. He had suffered a complete thoracic injury in a car accident, and nine months after his initial surgery, he was returned to the operating room because the hardware inserted to support his spinal column had become infected. He told us he had been okay up until that point, but when he learned of the infection, all the potential depression that had been lying in wait descended on him, and he barely had the energy to eat or get out of bed.