“Your unhappiness? Your professional disappointments? Those are my fault?” I asked. My hands were starting to tremble. I grabbed the prescription bottle of Xanax on the kitchen counter and crunched a couple of the baby-blue pills between my molars; they worked faster if you chewed them up rather than swallowed them whole. I wanted to avoid another eruption like the one with the glass globe, but it was too late. “Fuck you,” I said in a low hiss. “Fuck you for making me feel like more of a burden than I already do.”
To be a patient is to relinquish control—to your medical team and their decisions, to your body and its unscheduled breakdowns. Caregivers, by proxy, suffer a similar fate. But there are crucial differences between the two. More than ever, I wanted to walk away: from the changing treatment protocols and timelines, the exhaustion and the humiliation of having to ask for constant help. But as a sick person, I was bound to the mess of it all, to this wretched marrow of mine. As a caregiver, Will had been there out of love and also, perhaps, from a sense of obligation. The continuous refrains of “You’re a saint for sticking by her—a good man, a model partner,” surely did not lessen the pressure he must have felt. But being here, enduring this with me, was a choice. The truth was that he could leave. And he would.
* * *
—
Everyone did their best to support me when Will went to California that fall. My friends made a renewed effort to reach out and to drop off home-cooked meals from time to time, a neighbor volunteered to walk Oscar during chemo week, and my parents found someone to help clean the apartment. Will did his best from afar, calling several times a day to check up on me. For the most part, our conversations were full of the usual warmth and humor, but there were moments, especially when I was back in the emergency room or flailing under the stress of having to manage on my own, when it was hard to keep the resentment from creeping into my voice. But mostly, I just missed him. I thought often of Will’s words from that first night in Saratoga after my diagnosis: A lot of bad things are about to happen. We need to put our relationship into a box and to protect it with everything we have. And at first we had, the illness bringing us together, closer than ever before. But somewhere along the way, both of us had stopped protecting our relationship—worse, we’d turned against it, against each other in moments. Now the illness had pushed us three thousand miles apart.
In Will’s absence, I began spending more time with the cancer crew. Without my ever having to ask for anything or explain, they understood I was in a low-down place. Erika made sweatshirts with the words Team Susu printed across the front in varsity lettering, and Kristen accompanied me to urgent care or to my chemo appointments so that I wouldn’t have to be alone. Max was always showing up at my apartment with ninety-nine-cent slices of pizza and expertly rolled joints, and Melissa rallied the troops, organizing game nights, dance parties, and the occasional outing. A hiccup of genetics had brought us together—all of us bound by rogue, malignant cells and a heightened sense of our mortality—but at some point we’d become more than circumstantial friends. We were family.
* * *
—
One chilly evening later that fall, Melissa and I set out to meet Johnny at the Ronald McDonald House on Seventy-third Street and First Avenue. It was snowing a little, and we shivered as we stepped under the red awning and into the revolving doors. Johnny was waiting for us inside, dressed in a black suit, loose on his disappearing frame, and a large red tie that lapped down the front of a white dress shirt. His latest rounds of chemo had turned his skin a waxen, yellowish hue. I remember thinking how much frailer he seemed since we’d celebrated his twenty-first birthday just a few weeks earlier. Sick as he was, he had scrubbed up like a stud—and for good reason.
The Make-A-Wish Foundation is in the business of granting sick kids and teenagers a wish of their choice. I’d heard of wish recipients traveling to Spain to see matadors in bejeweled vests wave their crimson flags at testosterone-fueled bulls. Some went to Disney World to ride roller coasters with their favorite celebrities. Others requested beach vacations with their families at Hawaiian resorts. Johnny’s wish, by contrast, was simple. He wanted to take the cancer crew to a nice dinner and a Broadway show, but I suspected I had been invited as a foil. Going solo on a date with Melissa would have made his crush on her too obvious.
Johnny’s mom was there as usual, and his dad had flown in from Michigan for the week. They snapped dozens of pictures of the three of us as we posed in the lobby. Melissa and I stood on either side of Johnny with our arms looped through his, all of us grinning at the camera like we were headed to prom. A black limousine waited for us at the curb. The driver, dressed in a black sweater vest and a formal chauffeur cap, opened the door with a flourish. “After you,” Johnny said, stepping aside so that Melissa and I could climb in first. “Ooh la la! So chivalrous,” we teased as his ears turned bright pink.
The limo shimmied down Midtown’s crowded streets, passing Technicolor skyscrapers and mobs of tourists. We pulled up to a building with an enormous sign out front that said: Welcome to Flavortown. We had arrived at Guy Fieri’s eponymous restaurant in Times Square. A maître d’ escorted us through a maze of tobacco-hued wood-paneled rooms to our table. Johnny was visibly excited as he opened the giant menu, reading off the items he’d been wanting to try ever since he’d first read about the restaurant—specifically, the Bacon Mac ’n’ Cheese Burger and something called Awesome Pretzel Chicken Tenders. “Isn’t this amazing? We can order anything and the best part is—it’s all FREE!”
It made me happy to see him in such good spirits. He’d had such a rough go of things as of late. As an only child of mixed race, he hadn’t been able to find a donor match. The alternative for patients in his situation was a cord blood transplant, which required him to be in full remission before starting the procedure. But each time he got close to achieving remission, a barrage of infections and complications would set him back. Recently, his leukemia had stopped responding to the treatments altogether. Now the plan was for him to travel down to MD Anderson, the big cancer hospital in Houston, where he hoped to be eligible for a new clinical trial. He was leaving in a couple of days.
We ordered champagne and toasted to the success of Johnny’s upcoming clinical trial, to our crew, to better days, to Guy Fieri’s terrible taste in…everything. Half a dozen dishes arrived, covering every inch of the big lacquered table. Johnny took a few bites, but left most of the food untouched. As dinner went on, he got quieter and quieter. By the time the dessert arrived—a deep-fried “boulder” of ice cream—he looked shaky and pale, his forehead coated in a thin film of sweat.
“You feeling all right?” I asked.
“I’m good—no, I’m better than good. This has been one of the best nights of my life and it’s not even over. We still get to see a Broadway show!” he said with forced cheer.
When we arrived at the theater, the lobby was packed, and as we made our way through the crowd of shoving bodies, Johnny swayed unsteadily on his feet. We asked again if he was feeling okay, but he brushed us off, insisting he was fine. But as he walked up the carpeted steps toward the main floor of the theater, he stopped several times, leaning heavily against the banister. Melissa and I exchanged worried glances and walked discreetly behind him with our arms outstretched, ready to catch him in case he collapsed.
We made it to our section without incident, but when we showed our tickets to the usher, there was a brief, awkward moment as we realized only two of the seats were located together. Johnny looked a little uncomfortable, then mentioned that the tickets had been arranged last minute.
“So, who wants to sit where?” the usher butted in.
“Melissa,” Johnny asked shyly, “wanna sit with me?”
The usher guided Melissa and Johnny to their seats, which were located a row down and to the right of mine. Soon after, the show started, lights dimming, heavy velvet curtains parting to t
he thrum of music. But I couldn’t focus on the show. Instead, I leaned over in my seat, sneaking a glance at Johnny, checking to make sure he was all right. When I saw the ecstatic grin plastered across his face, I found myself chuckling, overcome with both pride and tenderness. Sitting next to the coolest, most beautiful girl of them all, he was better than all right.
Afterward, Melissa and I dropped Johnny off at the Ronald McDonald House. As we said goodbye, we knew there was a chance we might not see him again. I think he knew it, too. “Love you guys,” he said in an uncharacteristically earnest display of affection, then wrapped us into a gruff hug.
Three weeks later, Johnny’s mother called me from Texas. “Pneumonia, cardiac arrest”—her words came out in splintered sobs. “We don’t know nobody here. I need to get my boy home.” It was hard to make out what was happening. Then: “Johnny boy is with God now.”
22
THE EDGES OF US
WHEN WILL CAME home from California just after Christmas, I don’t know who was more relieved, me or the dog. I think it might have been Oscar, given that he peed all over the rug in excitement when Will walked through the door. In his absence, I’d realized some things. One was that I had been working and writing like I was running out of time, and I’d been running myself and our relationship ragged in the process. I also realized I couldn’t imagine life without Will and that I didn’t want to. The final thing I understood was that if something didn’t change soon, the damage to our relationship would be beyond repair.
Eager for quality time together, I suggested we head up to Saratoga. Since my parents were traveling, we’d have the house to ourselves. We packed a suitcase and the three of us boarded a train. We woke up the next morning to a foot of fresh snow, everything twinkling and untainted. Will and I wrapped ourselves up like mummies in hats and scarves, donned bulky coats and boots, and headed outdoors. Will began shoveling the driveway as Oscar raced through the snow in frenzied circles. I watched for a while, then gathered some snow in my mittens, pressed it into a ball and threw it at Will—resulting in a full-scale, exhilarating snowball fight. “I feel like Kevin McCallister in Home Alone!” I shouted, pinning him in the back of the head.
We passed the next few days this way, indulging in each other’s company, enjoying our little escape. Then on New Year’s Eve, we drove to a friend’s party in the nearby town of Millbrook. As Will steered the minivan down a frozen highway, we chatted about our resolutions. That year, there was an added sense of importance to the ritual, an urgency to get things right. We both agreed that we needed help and decided to look into couples therapy. We also talked about finding a change of scenery. Both of us were desperate to get out of the city, which had become synonymous with hospitals and heartbreak. We fantasized about moving into a little farmhouse in the Hudson Valley, somewhere quiet with a big backyard where Oscar could run free and we could plant a garden—where we could start over again. Or maybe we’d buy a car and live on the road for a while, exploring the country and camping in national parks until we found a new place to call home. “Let’s promise to lean on each other during these next months. We can’t let all that’s happened push us apart,” Will said. “The harder things are, the closer we should be. It’s our job. The most important job. I love you.”
It was everything I’d been wanting and needing to hear, and by the time we arrived at the party, I was glowing. In the hours that followed, we made good on the old edict—we ate, drank, and were merry. Our host took out a guitar and everyone sang along to Beatles songs. I sat on Will’s lap, our bodies swaying together to the music. Lizzie was there and at one point she pulled me aside. “I love seeing you and Will looking so happy,” she said. “I haven’t seen you like this in a long time.” She then told me that she and a handful of my closest friends had recently gotten an email from Will. In essence, he’d written that, although he wanted to respect my privacy, he also thought they needed to know the toll that my ongoing treatment had been taking on both of us. He wondered if they might be available as extra reinforcements, especially the weeks during and right after chemo, when the side effects were the worst. Will suggested creating an email chain, so that when he was working or couldn’t be home at night, someone else might be able to step in to help. Ending on an upbeat, he thanked everyone for their support: Most of all, I want to say if I haven’t in a while that I love you all and I’m so happy you’re looking out for Suleika. She doesn’t always let on how hard things are…But she’s strong, as we know. That Will had taken such a step made me feel both annoyed—that he hadn’t consulted me—and hopeful. It showed he was taking our problems seriously, that he was already looking for ways to make things better.
As midnight approached, someone suggested we go ice-skating. Everyone grabbed a bottle of champagne and a pair of skates, and we trekked through the snow toward the lake way out on the edge of the property. Will took my mittened hands in his as we skittered onto the ice. Everyone counted down to 2014, shouting at the moon. “To a better year,” I said, pulling him close. “To a better year,” he repeated, and we kissed.
* * *
—
When we returned to the city, we made good on our resolution to start couples therapy. We found our first therapist through the yellow pages. Her office had a ratty couch and a threadbare Persian rug. The air reeked of patchouli. She seemed ill-versed in the nuances of navigating a relationship during a long illness and she didn’t take insurance, so after a couple of unhelpful sessions we decided to move on. The second therapist we saw was part of the psycho-oncology program at Sloan Kettering and was covered by my insurance. Dr. T was kind and a good listener, but most of the time we left her office angrier about what had been said and heavier for what we’d learned of each other, feeling more rudderless than ever.
One day, Dr. T asked us if we might be willing to have one of our sessions observed by a group of residents. I agreed right away. Sloan Kettering was a teaching hospital, and I was always open to letting medical students observe. It seemed like a small sacrifice if our misfortunes could help someone else down the line. And I thought it might be helpful to hear other perspectives. But the session was a disaster. Will and I sat with Dr. T in the middle of a large conference room, as a row of strangers stood against the wall, observing us and jotting down notes on little pads of paper. It was humiliating to discuss the most painful and personal details of our relationship in front of spectators, and to have these details dissected into teaching moments.
“Most of the young, unmarried couples we see who go through extended cancer treatment together end up splitting up,” one of the residents informed us. “What would help you at this stage?”
“If we knew, we wouldn’t be here,” Will said, in a rare, open display of anger, the tendons in his neck twitching.
A dark cloud hovered over us as we left the appointment. “We’re never going back there again,” we both agreed. But we desperately needed guidance. Neither of us knew how to keep going, separately or together, anymore. And yet, the more guidance we received, the more defeated we felt.
Our friends and family would have been surprised to learn we were in such a bad place, as Will and I never fought or bickered publicly. In fact, it was the opposite—in front of others, it was all awe and affection. He marveled at me and I marveled at him, and we touched almost constantly, sitting shoulder to shoulder or holding hands. He was always doting on me—snapping photographs of me and bringing me glasses of water and tucking a blanket around my legs, or explaining my absence when I had to cancel plans to rest. We finished each other’s sentences without realizing it, and we were bound by a shared history that no one else could understand. Our loyalty to each other was oceanic.
In the privacy of our apartment, however, we had the same screaming arguments night after night. Why are you so distant, went my song. I need a break, went his. Oscar took to hiding under the couch until our voices returned to normal
decibels. I started popping small handfuls of Xanax each time I knew we were on the verge of a big fight. Sometimes, I’d reflexively take one as soon as I heard his keys jangling in the front door. My anger was slowly being replaced by a muted resignation. Any hints of intimacy, sexual or otherwise, were gone. Come bedtime, we’d switch off the lights and lie back to back, silently stewing, preferring to commune with our phones instead of each other.
Will had to return to work and as we said goodbye, I felt overwhelmed with a sense of something looming. I hugged him longer than usual, not wanting to let go, a lump of fear forming in my throat. It was the fear of loving someone whom you can’t bear to lose. Of knowing that the end might be near.
As I took the bus home that day, I reminded myself that Will was still here, by my side, after almost three years of treatment. I tried to convince myself that our relationship could still be resuscitated. I wanted to believe that it was simply a question of putting in more work, of trying harder and seeking out better help. Cancer is greedy, I thought. It has ravaged not only my body, but every single thing I’ve believed to be true about myself, and now it has metastasized to our relationship, ruining what was good and pure between us.
I wished more than anything that I could travel back in time. I would have been more vigilant about protecting our love. I would have started couples therapy on the day I was diagnosed. I would have refused to let Will sleep next to my hospital bed night after night and I would have leaned more on my parents. I would have tried harder to process the anger that, with no release valve, had welled and pressurized in me over time. But there was no turning back the hands of the clock and the way forward was unclear. The solution to our problems seemed beyond reach: a boat, lost in the fog, drifting farther and farther away.
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