Between Two Kingdoms

by Suleika Jaouad

  23

  THE LAST GOOD NIGHT

  TO THE POLICE officer, we must have looked like two more tough girls with terrible attitudes. We were decked out in matching black leather jackets. I was sporting a fresh buzz cut and heavy eyeliner, and a large tattoo of a python glistened on my neck. Melissa’s hair spilled to her waist, a dozen silver rings adorned her fingers, and her pupils were dilated from the pot she smoked almost hourly these days.

  What the police officer couldn’t have known was that my neck tattoo was fake, that Melissa was wearing a wig, and that she had recently learned that her Ewing sarcoma was terminal. Earlier that week the doctors had told her there was nothing more they could do for her. She had started exploring clinical options, shopping for time, but the prognosis was grim. To cheer her up, I’d proposed a night out on the town. So we’d made our way to a motorcycle and tattoo festival, then danced on our chairs under the sparkling lights of a disco ball at a drag burlesque show. And now we were here—standing face-to-face with a cop on a subway platform in Coney Island, the first hints of dawn seeping into the night.

  A few minutes earlier, we’d jumped the turnstile, even though both of us had MetroCards in our wallets. When facing death, the phrase YOLO—you only live once—takes on new meaning. But we had broken the law, the police officer said, and he threatened to haul us down to the local precinct. Without missing a beat, Melissa pulled off her wig, revealing her bald scalp. Her eyes glossed over with tears as she launched into an impressive fib about being in a rush to get home so that she could take her cancer meds. Her performance worked, and the cop let us off easy, issuing us two hundred-dollar tickets. He even apologized for having to give us tickets at all, but said that since we’d been caught on camera, he didn’t have a choice.

  “Partners in crime,” Melissa said to me under her breath after the cop wished us well and sent us on our way.

  “Bad to the bone—literally diseased,” I quipped back. The second we got on the subway and the doors closed behind us, we fell over each other, shrieking with laughter.

  It was the last good night we’d have together, but we didn’t know it. One rarely does.

  * * *

  —

  Eight weeks later, on a Monday morning in early March, I went to Sloan Kettering for my second-to-last cycle of chemo, but instead of feeling relief that I was almost done, my thoughts kept turning to Melissa. Her cancer was spreading through her body with terrifying speed and the tumors were ruthless. They had fractured her spine in two places and were pushing through her skull, distorting her delicate features and swelling one of her eyes shut. Melissa said she felt ugly and didn’t want anyone to see her. With the exception of me, Max, and a few of her closest friends, she refused all visitors.

  When people imagine dying, they seem to gravitate toward certain stories. In eulogies and obituaries, they invoke phrases like passed away, being called home, or gained her angel wings. These euphemisms make death sound so passive and peaceful, like drifting off into a midday nap. They prefer to think that when the time comes, a person feels somehow prepared. That was not the case with Melissa. She raged as death grew more imminent. “I’m not ready,” she’d say. “I still have so much to do.” She was also terrified, obsessing over what it would be like—and how her parents would cope.

  Every day that week, after I finished up my infusion, I rode the elevator to the eighteenth floor, where she was an inpatient. Each time I showed up she seemed sicker and sicker. One day, before entering her room, I saw her parents in the hallway. “The doctors keep telling us to prepare ourselves, we need to prepare ourselves,” her father said, rubbing his puffy eyes with balled fists, as if trying to wake from a nightmare.

  When I went to see Melissa another day, she asked me if I wanted to go on a trip with her back to India. She thought we should leave right away. “I don’t have much time,” she slurred, her voice soaked with morphine. I sat quietly for a moment, searching for the right words to respond. Over the last few years I’d watched my friends and family force upbeat smiles and blink back tears as they sat by my own hospital bed. Now, as I struggled to do the same, I stared up at the ceiling and swallowed hard, then bit my bottom lip as I tried to keep my composure.

  “Where should we travel to first?” I asked.

  There was no way Melissa could board a flight to anywhere. But we planned an itinerary anyway, imagining a trip that we both knew would never come to pass: the rickshaws we would ride through downtown Delhi, all the hand-painted marionettes we would buy at the market to add to her collection, a visit to the Taj Mahal at sunrise. I smiled brightly, nodding as she spoke, jumping in here and there with suggestions and murmurs of encouragement. India had become a metaphor rather than a destination.

  As Melissa began nodding off, I got up to leave. I squeezed her hand and stooped down to give her a hug. “I’m not ready,” she said tearfully. I tucked her in, pulling up the white hospital blanket and drawing the blinds. “Get some rest,” I said softly. “I’ll be back to see you tomorrow.” I paused in the doorway, just a moment, to watch her sleep.

  The next morning, Melissa was loaded into an ambulance and transferred to a hospice center in Massachusetts so she could be closer to home. She posted a photograph to Instagram, taken from inside the ambulance, two frosted windows looking out onto a busy avenue. “Bye New York. I loved you. My heart is broken,” she wrote in the caption below.

  I didn’t get to see her before she left. At the same moment that her ambulance pulled away, I was tied to an IV pole, a last bag of poison dripping into my veins.

  * * *

  —

  Death never comes at a good time, but getting a death sentence when you’re young is a breach of contract with the natural order of things. After years of being sick, Melissa and I had learned to coexist with the threat of death as best we could. Mortality was a stench we couldn’t wash off, no matter how hard we tried. We talked about it at length. Sometimes, we even joked about it. Melissa said she wanted everyone to cry a lot at her funeral. I said I wanted mine to have a raucous after-party, and together we drew up a rider, detailing the guest list and what kind of cocktails would be served.

  But nothing could have prepared me for actually losing her. The sheer number of times we had flirted with death and then recovered had, in a strange way, made us feel invincible. Even after Melissa left New York; even after she stopped answering text messages, her mind traveling to the watery space between the living and that other place; even after her parents wrote to say that in her final hours she was surrounded by family and dozens of doodads and trinkets and those hand-painted marionettes—it didn’t compute. It still doesn’t compute.

  The friend I could unapologetically talk to about everything was gone. But gone where?

  And why?

  Grief is a ghost that visits without warning. It comes in the night and rips you from your sleep. It fills your chest with shards of glass. It interrupts you mid-laugh when you’re at a party, chastising you that, just for a moment, you’ve forgotten. It haunts you until it becomes a part of you, shadowing you breath for breath.

  24

  DONE

  ON MY LAST day of chemo, my friends and family congratulated me on finally being “done.” After countless biopsies, antibiotic drips, and vomit buckets I was supposed to be rejoining the greater gathering. But in fact, the hardest part of my cancer treatment began once it was over.

  In the next month, I was hospitalized four times for a life-threatening C. diff intestinal infection I caught as a result of my weakened immune system. I nicknamed this month the “carnival of horrors” because each of the hospitalizations brought with it a relentless procession of surreal, harrowing events, breaking me piece by piece until there was nothing left of me to break.

  The night before the first hospitalization, Melissa died.

  During the second hospitalization, Erika
and the chef got married in a small ceremony in Colorado, but instead of being her bridesmaid, as I’d promised, I was tethered to an IV pole.

  A few days before the third hospitalization, Will began talking about taking a more drastic kind of break. He said he was thinking about moving out of our apartment and into one of his own. The idea was for us to live separately but still be together. He framed it as temporary, but I wasn’t buying it.

  Will’s proposition hit me like a shiv to the back. A part of me had been bracing for this moment for a long time, but still I found myself reeling. It seemed unforgivable that he would do this to me now, when I was raw from Melissa’s death and an infection was ravaging my guts. I wondered if this was his way of baby-stepping toward a permanent breakup. Even if, as he claimed, this was just a temporary arrangement and he eventually moved back in, I didn’t see how it would help us solve anything.

  I had always believed in a world where love could overcome anything. I believed love could redeem suffering and transform the brutality of a life into something bearable, even beautiful. But I was losing trust that the next time things got hard, he wouldn’t up and leave again. I was losing faith in us.

  I threw one last Hail Mary pass and did what the desperate do: I issued Will an ultimatum. “Either you stay and we figure out how to get through this together, or you move out and we are done,” I said. “I can’t keep doing this.”

  Twenty-four hours later Will found an apartment in Brooklyn with a move-in date scheduled for two weeks away. When he told me he was considering renting it, I did nothing to stop him. Rather, I pushed him away. “Go, what do I care?” I said, though every inch of me wanted to scream the opposite. Before I could fully process what was happening, Will signed the lease and I was back in the emergency room with another C. diff attack.

  It was my fourth and final hospital stay. I was admitted to the eighteenth floor and placed in a room next door to where I had last seen Melissa. It felt like a cruel joke that, out of the hundreds of hospital rooms at Sloan Kettering, I would end up here. Melissa and I even had the same nurse, a woman named Maureen with a fire-hydrant-red pixie and matching lipstick. I begged to be transferred to the leukemia or transplant floor, but the hospital was over capacity, so there was nothing anyone could do. Being forced to sleep just a few feet away from where I had said goodbye to my dead best friend felt personal—a punishment intended to push me over the edge.

  * * *

  —

  The day I was discharged from the hospital was the day Will moved out. When I arrived home, toting a large plastic bag from the hospital labeled Patient Things, the apartment was quiet, eerily so. You should cry, I told myself as I stood in the doorway, but I was too tired to cry. I wandered around the apartment, a confused Oscar trailing behind me, as I inspected the empty closets and dresser drawers with a strange methodical finality. In one of the drawers I discovered an old pack of cigarettes. I knew better, but I lit one up anyway. I sat on the kitchen floor and smoked it slowly, my hospital bracelet still wrapped around my wrist.

  The inner scaffolding that had been supporting me since my diagnosis had crumbled. While in treatment, I had been surrounded by the world’s best cavalry: my boyfriend, my family and friends, and a brilliant medical team that had worked tirelessly to keep me alive. The goal had been to get rid of the cancer. But now that I was done with the “cut, poison, burn” part of the disease, I sat dazed and alone in the rubble, unsure how to move on, wondering where everyone had gone and what to do from here.

  I hadn’t noticed the fine print until now: When you survive something that was thought to be unsurvivable, the obvious is gained. You have your life—you have time. But it’s only when you get there that you realize your survival has come at a cost.

  * * *

  —

  It would take me a while to pick myself up from that kitchen floor—a lost year spent seething and grieving and struggling to find my way forward—and on that terrible day, all I could do was finish my cigarette, close the blinds, and crawl into bed. Melissa is gone. Will is gone. My cancer is gone. I repeated these facts to myself, willing them to sink in, willing them to feel real, but instead, I felt only numbness. It was as if the sentient parts of me had been put under anesthesia. I couldn’t tell you what I did the rest of that day, or the next, or the one after. I imagine I walked the dog, stocked up on coffee and milk, and answered the phone calls of my parents often enough that they didn’t show up on my doorstep, but I can’t say for sure. I was going through the motions, but in fact, I was barely there.

  The only thing that pierced the numbness was the specter of Will. He’d left, but not entirely. I could feel his presence—or rather, his absence—like a phantom limb. Will had been my caregiver, my confidant, my lover, my social buffer, my best friend. At times, he’d been my literal crutch, helping me walk, feed, and bathe myself when I didn’t have the strength to do so on my own. He had been too many things for one person to be for another, but I couldn’t fully see this yet—only that, without Will by my side, I had no idea how to navigate the world alone.

  Although I’d promised myself not to call him, the urge was never far from my mind. A week after he moved out, I caved. “Can you come over?” I said to him one night when I could no longer bear the quiet of the apartment. An hour later I heard his keys in the door. He opened it without knocking, as though we still lived there together. For a few minutes we pretended nothing had changed and he rolled around on the floor roughhousing with Oscar as he always did before standing up to hug me. Then we ordered takeout from Lil’ Frankie’s around the corner and made attempts at civil chitchat before things, inevitably, devolved.

  This became our routine, days of silence punctuated by late-night visits, which always culminated in one of two ways: Either we’d get into a screaming fight over who had done what to land us in the mess of the present, or Will would spend the night. We never had sex—that hadn’t happened in months—but I was terrified of sleeping alone, and it brought me comfort to know that he still wanted to stay over. I kept hoping that being together like this, curled up with the dog like old times, would make Will realize what he was risking and that he’d apologize and move back in for good. But our togetherness, what was left of it, felt hollow. Each time, when morning came and he got up to leave, I felt humiliated and hurt. Never again, I vowed as I locked the door behind him, promising myself to stop calling, to stop inviting him over.

  Alone in the apartment once again, I alternated between hating Will in a fervent, venomous way and lying dazed on the kitchen floor. In my mind, I was rewriting our life together as a simplistic screenplay, and the story arc went something like this: I got sick and Will got sick of my sickness, slowly distancing himself over time until he abruptly moved out, abandoning me while I was in the hospital. It was easier for me to frame it this way, to put all the blame on Will, than to reckon with the other parts of the story: all the ways in which I’d failed him, driving him to burnout—driving him to leave. The deeper truth of why we ended smoldered beneath the surface, still too hot to probe.

  Will was my great love—I was pretty sure that this would always be the case—but as much as I wanted to think that with enough time and space we would eventually find our way back together, I no longer believed this was possible. We’d been mired in the caregiver-patient dynamic for so long that our resentment had hardened around us, trapping us like flies in amber. To keep waiting for Will was to invite the probability of more grief, more pain, more fury, and that I didn’t think I could bear. For the first time in my life I had the distinct feeling of having reached a precipice that I hadn’t known was there until I was teetering on the edge. I’d reached the limit of what I could endure.

  The way I was beginning to see it, I had a choice to make: If I wanted a shot at finding my place among the living, I would need to stop fighting for a relationship that had flatlined long ago. I would need to start f
ighting for myself.

  PART TWO

  25

  THE IN-BETWEEN PLACE

  “EVERYONE WHO IS born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick,” Susan Sontag wrote in Illness as Metaphor. “Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

  By the time I reached my last day of chemo, I’d spent the majority of my adult life in that other realm: the kingdom of the sick no one cares to inhabit. Initially, I’d clung to the hope of a short sojourn, one in which I wouldn’t have to unpack my bags. I’d resisted the label of “cancer patient,” believing I could remain the person I’d been. But as I grew sicker, I’d watched my old self vanish. In place of my name, I had been issued a patient ID number. I’d learned to speak fluent medicalese. Even my molecular identity had morphed: When my brother’s stem cells engrafted in my marrow, my DNA had irreversibly mutated. With my bald head, pallor, and port, illness became the first thing that people noticed about me. As months bled into years, I’d adapted to the mores of this new land as best I could, befriended its inhabitants, even carved out a career within its confines. In its terrain, I’d built a home, accepting not only that I might stay there for a while, but that likely I would never leave. It was the outside world, the kingdom of the well, that had grown alien and frightening.

  But for me, for all patients, the end goal is eventually to leave the kingdom of the sick. In many cancer wards, there’s a bell that patients ring on their last day of treatment, a ceremonial tolling that signals a transition. It’s time to say goodbye to the eerie and changeless fluorescence of hospital rooms. It’s time to step back into sunlight.