Our Year of Maybe

Until we learned Sophie was a match, I’d given up hope that I’d get lucky twice.

Sophie and dialysis have been the two constants in my life. We performed for our families and for ourselves as the Terrible Twosome. She told me stories when I was bored and made up games for us to play, new worlds for us to live in. Sometimes she just sat next to me and watched movies. So many goddamn movies. On days I couldn’t stay awake, she took naps next to me, her body warm against mine.

I liked waking up when she was still asleep, her chest rising and falling with her steady breaths.

Later that evening my mom buries herself in what must be the twelfth revision of chapter eight hundred of her book and my dad scrolls through Netflix, spending an inordinate amount of time deciding what to add to his queue. I’m down the hall in my room, in the middle of my post-dinner exchange. It’s then that I’m struck with a sudden thought: After the transplant, I won’t have to do this anymore. All these medical supplies, which make my room feel more like a hospital than I’d like, will be gone, a revelation that nearly chokes me up.

If it’s successful.

I shake that thought away. No pessimism. Not after all these years on the list when a match was right across the street.

Optimism only, I remind myself. Okay. I allow myself to imagine September. While I like homeschooling, I’ve thought about returning to school for a while, and summer will give both Sophie and me enough time to recover before school starts. Mainly, homeschooling was just . . . easier. Easier not to explain my exchanges and unusual diet, bodily functions most people find embarrassing, my entire medical history when someone asked what they thought was an innocuous, curious question. At North Seattle High, I can be an entirely new person.

After I finish the exchange and clean up, I thumb through my record collection. Normally I’d put on my headphones and play keyboard, but I’m exhausted and still have to submit that final paper. When I realized I didn’t only have to play classics on piano, I started learning as much modern, piano-centric music as I could: Rufus Wainwright, Ben Folds, Regina Spektor. I put on Soviet Kitsch, one of Regina’s older albums, filled with clunky piano melodies and irreverent lyrics. Years ago I started writing my own music, which at first borrowed chord progressions from my favorite songs before I endeavored to create something of my very own.

When Sophie and I played together, sometimes she offered suggestions. “Try going lower on that part, instead of higher?” or “Can you slow down the beginning?” There was something about our collaboration, about watching her move to my music, that messed with the tempo of my heart.

My parents tend to go all out for my birthdays: baby grand piano, keyboard, top-of-the-line speaker system. I got a vintage record player off eBay when I turned fifteen. And then there’s Mark.

For the longest time, I wanted a sister or brother. When I was nine and my parents made it clear a sibling wasn’t going to happen, they said I could have a pet instead.

“Anything I want?” I asked.

“Anything you want,” my dad said.

“Except for a dog,” my mom added quickly, because we all knew who’d end up walking a dog. So we went to the pet store that weekend, and I picked Mark.

He’s nocturnal, so he’s waking up now. Chinchillas can’t get wet—they come from desert climates and their fur can be slow to dry—so they take dust baths to get clean. Mark gets really into it, rolling and flopping around. Sophie and I used to film videos and put them on YouTube for all our literal dozens of subscribers.

I get what my parents were trying to do. They wanted my home to make me happy—not just because they felt sorry for me, but because they wanted me to have a reason to stay here. If I had everything I could possibly want in my house, I’d never want to leave and risk one of those freak accidents they were always worrying about.

I accepted it. It was easy to curl up in here with Sophie and hide away. Easy to get complacent.

I dump dust into Mark’s dust house, unlatch his cage, and reach a hand in.

“Hey, you,” I say to him now. His tiny black nose twitches, and I bury my fingers in his soft fur. “I’m going to miss you when I’m in the hospital. I want to think that you’re going to miss me too, but . . . that might be giving you too much credit.”

I pull him out of the cage, holding him against my chest before I let him into the dust bath and he loses his little mind.

Then I do what I always do when I’m lonely and Sophie isn’t here: I message her.

How’s the party?

She sends back a picture of herself in a party hat, a finger drawn across her throat. As usual, her hair is spilling out of its ponytail. She’s always wanted to grow it long, but she’s never had the patience. So many times I’ve stopped short of telling her I like it the length it is. That I always like her hair, whether it’s damp from the shower or untamed in the morning or curling softly onto her shoulders.

But I’ve never been very good at giving Sophie compliments, and even if I did, I worry she’d laugh them off. Assume I was just being nice.

That good? I write back.

I stare at my phone for two, four, eight minutes, until it becomes apparent she’s gotten wrapped up in party festivities. Sighing, I drop the phone onto the bed and flop backward, frustrated for more than a few reasons. At the top of the list is my complete inability to articulate my feelings to Sophie. The one and only time I tried, it was disastrous.

Sometimes I feel so utterly trapped by these four walls, by this house. I’ve never done anything to lose my parents’ trust. It was my body that betrayed them. My illness isn’t what’s prevented me from fully participating—it’s everything that goes along with it, my overprotective parents and my perpetual exhaustion and how easy it was to say thank you for the flat-screen TV instead of “Could I take driver’s ed next semester?”

No matter how much stuff I have, I’m almost always alone in here.

Complacency.

It’s suffocating.