Shooing Carolers Away for a Love That Stays

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My parents, roommate and I could hear carolers down the hallway. “Deck the Halls” shook me out of the haze that had kept me floating above myself in bed, disengaged from a body that was 22 pounds lighter than when I had started chemotherapy weeks before.

Eventually the carolers would reach my room, but I was more drawn to the view from my window. I liked staring out at the healthy world’s layers so as not to forget my place in them — a street, a garden inside a black gate, the East River, Roosevelt Island, Queens, Long Island, the ocean.

Stuck to the glass were Christmas and Hanukkah decorations made of gummy material: fat Santas twirling around dreidels with snowflakes falling upon colorful boxed gifts. The pediatric oncology floor felt as festive as a suburban mall. My once-a-day walk of the unit was a stroll through a malignant winter wonderland.

The carolers were getting closer. A volunteer would soon knock and ask if it was O.K. for them to come in. All day long there were unwelcome entrances, a revolving door of doctors, nurses, aides, physical therapists, social workers, psychiatrists and one diligent nutritionist. Sometimes, at day’s end, I would hear the quiet knock of a friend, or better yet, Rachel.

Rachel wasn’t my girlfriend, but she wasn’t not my girlfriend. We had met in September, kissed in October. Soon after, I woke up with her in her twin bed. We saw each other a few times a week, sometimes sleeping over. In early November, she made me dinner. As we washed dishes, I decided I liked the smell of her shampoo.

At some point during that idyllic fall, I developed a cough that wouldn’t go away. Rachel encouraged me to see a doctor. When I finally did, the doctor sent me for a precautionary X-ray, but the machine was broken, so I left, relieved to return to my life as a busy recent college graduate.

The cough remained, however. A few hospital visits later, I learned I had an aggressive form of pediatric leukemia that can also occur in young adults. When I sought a second opinion, I was admitted on the spot.

Only months earlier I had graduated from Fordham University’s Lincoln Center campus, having majored in directing and acting. I even forfeited a winter break to study in Russia at the Moscow Art Theater. Now, at 22, I had never been so happy with my life — going to auditions and rehearsals, applying for jobs, and seeing Rachel in between.

I told her I had cancer over dinner at Whole Foods.

“You don’t have to stick around for this,” I said.

I thought we would end things there, but she showed up at Sloan Kettering days later, finding me in pediatrics with greasy hair and wearing size 14 pink sweatpants, provided by the unit. And she kept showing up.

The morning of the carolers, my body tensed as a team of doctors, nurses and students stopped by on their rounds. They frowned at my chart, seeing I hadn’t gained any weight. At 5 feet 6 inches, I weighed only 93 pounds.

“When can I get this feeding tube out?” I asked.

“Not today.”

When they asked how I was feeling, I said, “I think I’m a little anxious?” And Ativan was added to the long list of prescriptions brought to me in tiny plastic cups.

Lying in bed, I could easily imagine the carolers’ lives. They were probably unemployed musical theater actors hired to sing basic harmonies while wearing velvet costumes. Later they would go to a Christmas party with other actor friends, and if someone asked, “What are you working on?” they would say, “Oh, nothing right now. But I’ve got this day job singing Christmas carols for children with cancer. It’s so rewarding.”

In high school, I spent nights and weekends during the holiday season in medieval garb, going to Christmas parties that hired our choir to sing carols for their guests, something I used to joke about in the dorm. It wasn’t until hearing the carolers that I realized how much I had loved singing our jazzed-up version of “Rudolph the Red-Nosed Reindeer.”

During one of the performances of “Deck the Halls” that day, I had tried to hum along, but my vocal cords produced only a strained rasp. Losing my voice meant sacrificing yet another anchor of my identity, a new loss added to the long list I didn’t want to say out loud. If I were to talk about my inability to sing, or how my leggings no longer fit snugly over my hipbones, it would make those losses feel more real.

As predicted, a volunteer appeared in the doorway and said, “Do you want to hear the carolers?”

“No,” I said.

“No,” my roommate said. I liked her already.

Allison was 20. She had started her sophomore year of college in September but left a month later because of “a cold that wouldn’t go away.” She had a blog and often posted about her treatment on social media.

Meanwhile, my Facebook feed had just a few photos of me with a shaved head, enough to make an acquaintance think I was going through a rebellious phase. Although I envied Allison’s online presence, I realized that my disengagement was more about shame than self-preservation.

“How long is your treatment?” I asked.

“Six months.”

Her answer staggered me. By the time she finished, I would be only a quarter of the way done.

“Why?” she asked. “How long is yours?”

“Two years.”

“Why so long?”

“I don’t really know,” I said, embarrassed.

Unlike Allison, I hadn’t asked questions. Ignorance was my survival technique.

That night, long after the carolers had left, there was a quiet knock on the door.

“She’s here,” I thought, and a moment later Rachel walked in with her signature lightness. Her positivity was stubborn but welcome in that room, where my parents and I didn’t even notice that the sun had gone down. We were still stunned to even be there. We had thought I would be an outpatient. No one knew the side effects would be so extreme.

Rachel came bearing gifts, one in a cookie tin and the other in a wrapped cardboard box.

Opening the tin for my parents, Rachel said, “I made these for you.” Inside were blueberry muffins.

“Wow, thank you,” my father said.

“Yes, thank you, Rachel,” my mother said, her tone softer than the polite tolerance from when they first met at the hospital weeks ago.

My parents left so Rachel and I could be alone (well, almost alone — a curtain separated us from Allison). After they stepped out, I felt nervous and relieved because it was the first time Rachel had seen me this sick. I couldn’t pretend I was anything other than how I appeared — skinny, balding, a tube stuffed up my nose and taped to my face.

I patted the side of my bed, gesturing her to come closer.

She handed me my gift and squeezed in beside me — another twin bed. Unwrapping my present, I felt my dry hospital skin against her soft, warm clothes.

“It’s silly,” she said nervously.

That she would feel nervous struck me as ridiculous. Making those blueberry muffins had instantly made her part of the family.

“It’s a Russian stacking doll,” she said, “but a tree.”

I held the wooden Christmas tree, which was painted black with gold, green and red ornaments and a glittery gold top. I opened it to find a series of round, smiling Santas stacked inside, each smaller and more thoughtfully painted than the previous one.

“It reminded me of you,” she said. “It’s unique and pretty, and because you went to Russia, so ——”

“I love it,” I said, placing the gift prominently on my nightstand.

Now, six years later, I have neither leukemia nor Rachel. Still, her gift sits on my coffee table every December, a reminder of when I was so sick, but so grateful. That gift meant I had a person, one who not only made baked goods for my family, but also gave me a silly stacking doll just because it had made her think of me. It meant I existed outside of the hospital, carried along in someone’s thoughts as she walked through a Christmas fair.

In the bed, Rachel held me close, and I folded easily into her arms.

“I’m sorry I’m so small,” I said, letting her in on my fearful inner monologue.

“Shh,” she said.

In the quiet that followed, I knew I loved her. Loving her wasn’t a choice or something I needed to say yet, but it became my one untouchable thing. As my body disappeared, I still had a person to care about. Unable to sing, speak normally, walk without help, look at a screen or read a book, I existed because I loved.