Already, my memories of the hilly streets of San Francisco, the echoey halls of PCCA, and even the audition itself are fading. It’s like when you wake up from a dream and at first it’s vivid in your mind but then by the afternoon, it’s gone. But the Zephyr is real. If I close my eyes, I can practically feel the movement of the train. I wish I could keep riding, back and forth through the flatlands and the mountains, and let everything else fade.
We’re halfway home, the plane still and dark except for the occasional reading light marking the other sleepless passengers, when I remember that “This Land Is Your Land” isn’t actually a children’s song—it’s a folk song. By Woody Guthrie, the world’s most famous Huntington’s patient.
* * *
Dad seems exhausted when he picks me up at the airport early in the morning. I pile my stuff into the trunk and settle myself in the car next to him. There are dark circles under his eyes and I swear he’s even balder than he was four days ago. He leans across the gearshift to give me a kiss on the top of my head.
“So, child, tell me everything. We missed you around here.”
“Okay, Dad,” I say. “I was only really gone four days, you know.”
“Sure, sure. That’s what they all say when they grow up and leave their pitiful fathers behind.” He’s acting normal, cueing up his usual mix of self-deprecating Dad jokes, but there’s something about him that seems off. Like he’s trying too hard.
“So you had a good time?” Dad says after a few minutes of silent driving.
I think about the Zephyr, the whole country passing by us outside, and all those people with their lives and their stuff, and the audition that might be the final moment of my dance career. “Good time” hardly seems to cover it.
“Yeah. It was good. The audition was … It went well.”
“Of course it did. And if they don’t let you in, you know what I say to that.” I do know what he’s going to say, but I let him say it anyway because it’s his favorite line. “Fuck ’em if they can’t take a joke.”
Hearing Dad drop an F-bomb makes me well up with affection for him. I actually get a little bit teary for a minute.
“What’s up with Mom?” I ask.
It’s started raining, almost-ice crystals forming in the raw, April morning air and racing along the windshield. Dad clears his throat. He hesitates. “What? Did something happen?” I say.
He shakes his head, like maybe he’s pushing back some tears. “Nothing in particular. Just, you know. It never really sinks in that it’s not as bad yet as it’s going to be.”
I focus on a single ice crystal and watch it trace its way across my window until it disappears where the glass meets the door. It’s an old habit, watching the raindrops rush along the car window. I used to pretend they were racing each other, each with some place really important to be. Now I see they’re just following a path they can’t deviate from. The winners and the losers are predetermined by the angle of the window and the rain and the wind; nothing those raindrops can do will change their fate.
* * *
My bedroom is cleaner than I left it—Gram must’ve vacuumed and picked up. It smells like fresh sheets, and there’s a pile of laundry, folded and sitting on my armchair. I have a strange feeling, like I’m somehow different than I was the last time I stood in this room. I climb into bed without even bothering to close the blinds against the morning light.
Who knows how long later, my phone buzzes with a text, waking me. It’s almost one already.
Caleb: Home yet?
I write him back quickly: Affirmative. Just woke up.
Caleb: Can I swing by?
Me: Yes please.
Twenty minutes later, I hear a knock at the front door, then Dad’s voice. “Caleb! You didn’t waste much time, did you?”
Caleb laughs. “Hey, four days without Rose is a long time.”
“I’ll give you that,” Dad says. “Good to see you, come on in. The child is upstairs, of course. I think she might be sleeping.”
The stairs creak and then Caleb’s in my room, and then my arms. I almost forgot how solid his chest feels against my face when I press my cheek up against it, breathing him in. His shirt smells like Tide, the ocean-fresh kind. Usually when we kiss, he starts and I follow. This time, I lean up toward his face and find his mouth with mine.
* * *
“Young people!” Dad yells upstairs, fifteen, maybe twenty minutes later. I really have no idea how much time has passed. Caleb does that to me. “Chinese okay for lunch? We’ve got a ton of leftovers.”
“Great,” I whisper. “Because it went so well the last time we all had Chinese leftovers together.”
Caleb kisses the tip of my nose. “I think it went well. I got you to kiss me, didn’t I? Pretty sure your mom and I were in cahoots about that.”
“In cahoots, huh? Okay.”
I kiss him back, this time on his eyebrow, which has one crazy strand twisting away from the rest. “Sounds good, Dad!” I call toward the door.
I give them the full play-by-play of the trip over lunch. Mom doesn’t seem completely focused on my retelling of where I was, but every time someone nudges her, she acts excited all over again. At least we’re not repeating the conversation we had before I left for San Francisco—if you can call it a conversation. Maybe one-sided irrational disease-induced rampage is a more accurate descriptor.
When I get to the audition itself, I struggle to find the right words to describe what happened. “I don’t know,” I say. “I can’t explain it.”
“Is that a good thing, or a bad thing?” Caleb asks.
“Good. It felt really good.”
“All right!” Dad says. “That’s my girl. I’m sure they were all blown away.”
“Everyone was really good, Dad. It’s a different league than NEYB. Don’t get your hopes up.”
But I saw the way the judges looked at me, and every fiber of me felt how well it went. Even though the competition is stiff, I know I’ll be right in the mix. So maybe I’m really warning Dad about something else.
* * *
After lunch, I force Caleb into an intense Scrabble match on my bedroom floor. We kneel opposite each other on the floor with the board between us. I’m crushing him. He’s a visual person, as he always reminds me whenever he’s losing at Scrabble.
“Prepare to be impressed,” I say, adding an I and an S to the Q in “quietly.”
“God. You are freakishly good at this.” He leans over to survey the board. “Wait. ‘Qis’ is not a word. No way.”
“I swear it is.”
“You swear wrong.”
“Are you really going to make me go to the dictionary for this?” I ask, sitting up on my knees.
“We’re so going to the dictionary.”
I’m dead certain that “qis” is Scrabble-eligible—only because I’ve spent some time perusing all the legit Q-words in the online Scrabble Word Finder—but I let him pull his phone out and check anyway. “You’re going to be embarrassed…” I say.
“I am rubber and you are glue,” he says, waiting for the Internet to give him an answer. “Your words bounce off me and stick to you.”
“What are you, ten now?” I toss a tile at him.
“Evil twins’ influence,” he mutters. “Qis…”
His face falls and he puts his phone back in his pocket. “So, never mind, then. What were we saying?”
“Oh come on!” I say. “What’d you find, my friend? Do tell.”
“Fine,” he grumbles, pulling his phone back out. “But this is truly ridiculous. It says: ‘No definition of “Qis” found—it’s still good as a Scrabble word, though!’” He looks up at my grinning face. “What does that even mean?”
“It means I’m right and you’re wrong,” I tease. “Obviously.”
“Who knew you could use words that don’t even have definitions in Scrabble?”
“Um, well, I did.” I lean across the tiles and put my face so close to his that our
noses practically touch. “So there.”
Caleb leans a few centimeters closer. “Well,” he says, barely audible, “you are a nerd who studies obscure, definition-less vocabulary for the express purpose of winning Scrabble.” His lips brush against mine with every word.
When we pull apart, just by an inch, he holds my face gently in his hands. “Hey,” he says.
“Hey.”
And suddenly, I can tell where this is going. It’s like the Zephyr pulling out of the station, slow and steady but unstoppable.
“I love you, HD.”
There it is. Those three words stop everything. They stop the white noise from the street outside and the sound of our hearts beating. Maybe if I don’t breathe, if I don’t move, I won’t have to respond. I want to say it back. I want to be a person who can love back the person who loves me, especially when he is so good.
I can’t. This is why I have a rule about this in the first place. It’s one thing—one extraordinary thing, apparently, judging from the way it makes my chest want to explode—to be loved by someone else. But to let yourself love them back, to tell them that, that’s like … setting yourself up for loss, right? What if I let myself love him and then he lets me down? What if he changes his mind? I don’t think I can love another person who’s going to disappear. It’s too much.
Instead, I kiss him again. He kisses me back, but even without words I can feel his disappointment.
“I should go,” he says, getting up and zipping up his sweatshirt.
I walk him downstairs and stand in the foyer in my socks, the welcome mat prickly under my feet, wanting to get rid of this terrible awkwardness that seems to have materialized out of nowhere.
“Sickle Cell…” I say, tugging at his sleeve. “See you tomorrow?”
“I have some stuff to do for my dad, but maybe. Give me a call.” He kisses me one more time, just lightly on the cheek. Then he goes, leaving me with the moments before tying themselves in knots in my stomach.
* * *
Trying to shrug it off, I import all 386 new photos from my phone to my laptop and find Mom. She’s more than happy to sit at the dining room table and watch as I scroll through them, giving the best explanation I can of each one (all the various rock formations start to blur together—I wish I’d taken notes).
Midway through the pictures of what I think is Utah and the salt flats, she closes her eyes, breathing in sharply through her nose.
“You all right?”
She holds up one hand to stop me from saying anything more. Then after a moment, she opens her eyes again. “Wish I could see it … myself.” She reaches out and tries to smooth my hair with an unsteady hand. “Okay. More.”
“There’s like three hundred and forty more to go. We can skip to the highlights if you want.”
“No.”
So we paw through picture after picture, even the ones that mostly look the same. I try to make up interesting details to help the narration. “When I took this one, I was talking to the French couple,” or “This is when I was eating lunch—the veggie burger was shockingly good!”
It feels good, hanging out with Mom—sometimes, she still seems like the parent in the equation, and it’s like a balm on everything else going through my brain right now. Once we’ve finished going through the pictures, I turn on the TV and find us some House Hunters International. In the current episode, a young, hip American woman has moved to Paris to be with her French boyfriend, and now they’re looking for an apartment in the eleventh arrondissement, which apparently used to be run-down and precisely for that reason is now the place where all the young, hip people want to move.
It seems like Mom’s body is more committed to a project of constant motion than it was less than a week ago. Or maybe a few days away just makes it that much more obvious to me. The skin on the pads of her thumb and forefinger is raw from the way she constantly rubs them over each other. Her limbs, her head, everything looks like it’s on vibrate all the time, with the mild vibrations punctuated by more violent movements. I know this is the chorea advancing—Dr. Howard has been honest with us about how this would happen—but it doesn’t look anything like a dance. That part was a lie.
Grunting at the television, Mom shakes her head with great effort (the irony being, of course, that her head shakes on its own with no effort at all when she doesn’t want it to). “It’s always the ssssame,” she says. “Some girl gives up her life … for a man.”
It’s a fair point, really. By now we’ve seen countless episodes of this show that involve American women moving overseas to be with their foreign boyfriends/husbands. And somehow the boyfriends/husbands always seem to get what they want in a house, while the women are inevitably like, “Oh, I’d really like to be near the city because this is my first time living abroad, but okay, Francois/Alejandro/Baz, you’re probably right that we’ll get more for our money in this run-down suburb where you can easily commute to work in your Smart car/motorbike/Segway and I’ll be stuck forty minutes by public transport from the city center.” You can sort of see the unraveling of their relationships before it even happens.
Sure enough, the second house the realtor shows this particular young woman and her particular French boyfriend is a bigger, cheaper place in the suburbs, and I don’t have to watch the next twenty minutes to know how it’s going to end.
“Rose. Listen,” Mom says over a commercial. “Don’t ever give up your life for a man.”
“Okay, Mom.” If only she knew what just happened with Caleb. Throwing myself too far, too fast into a relationship probably needn’t be at the top of her list of worries for me.
“Or for me,” she goes on. “I don’t want you to put your life on hold, for me.”
I put my hands over hers on the couch. They stop moving, fluttering gently to a halt like a butterfly you’ve cupped in your hands. “I won’t, Mom. Really.”
She doesn’t say anything else, and we turn back to the show.
“Ma,” I say when the episode ends (spoiler alert: they take the place in the ’burbs), “you know we’ll take care of you at home, right? No matter what?” Dr. Howard has warned us that this is almost impossible, but I’m sure Dad has said it to her a thousand times anyway. I don’t know if I ever have.
“Babe,” she says, her head quivering continuously, “one day ssssoon, I won’t even … be myself.”
My face gets hot and a lump forms in the back of my throat, solid and painful. I don’t say anything. I can’t.
Mom shakes her head determinedly, forcing it to move the way she wants it to for once, instead of its own way. “I want you to live better.”
With that, she takes my hand and pushes herself up off the couch with a grunt. I help her into her chair, and she buzzes off toward the kitchen, leaving me alone in the living room with her cryptic message and an ensuing marathon of Love It or List It.
Twenty-five
On Monday morning, when I’d like to be catching up on my sleep—school’s out for some kind of professional development day—Dad bangs loudly on my door. “Rose, I need a favor!” he says, busting straight in, per usual.
“What the—Dad, what?” I come to, trying to orient myself to the day and time. I’ve been home from San Francisco for two days, and my body is basically clueless as to the time zone. When I find my cell phone, I see that it’s barely eight o’clock.
“Sorry to wake you. I’m late for work. Gram has a headache and wants to stay in bed and your mother has an appointment for physio at ten. I need you to take her. Sorry, babe.”
I groan and force my eyes all the way open. “Okay. Fine.”
“You’re the best, love you, ten o’clock, don’t forget, bye!” He closes the door behind him.
An hour and ten minutes later, I’ve got Mom situated in the car, her wheelchair folded up in the back, and we’re headed to Mass General, to her physical therapist’s office.
“Thanks for taking me. It’s your day off.” I can tell it pains her to need me l
ike this—to have to rely on her only child when I should still be able to rely on her.
“It’s okay. I don’t have any plans today.” That’s not totally true—I was hoping to see Caleb, but we haven’t talked since the other night. I’m not sure he wants to see me.
“Good. I don’t want to be a bother.”
“Okay, Mom. You’re not.” I don’t know why it exasperates me when she says stuff like that. I know she’s being genuine, but for some reason it irks me. I don’t like the idea of her being some saintly sick person. It doesn’t feel like Mom, the saintly or the sick.
“What do you do in physio, anyway?” I ask her, to head off any more maudlin comments.
“Bullshit. Pick things up. Put them down.”
I laugh and she joins me. Even though her speech is slurred now, her laugh hasn’t changed that much.
“Hey!” She jabs my right arm. “Let’s play hooky.”
“From physio? No way. Dad’ll kill me.”
“Come on! Don’t be a spoilsport.”
I know that Dad will kill me. But I also know that it won’t kill Mom to miss a physio appointment. One might ask what is the point of them, period. They’re not actually making her better. I suppose they make Dad feel like we’re doing something other than watching her deteriorate.
“Where would we go instead?”
Mom doesn’t say anything for a minute. She looks like she’s concentrating really hard.
“The theater?” she says finally. “The ballet?”
I shake my head. “It’s Monday. No shows. Anyway no matinees, for sure.”
“Oh right.” She pauses again. I’m mulling it over too. Where could Mom and I go, where we could have fun? Fun like we used to have. Not shopping—I can’t remember ever enjoying shopping with Mom. Something special and unusual that only she and I would want to do together. Then I remember the signs they’ve got plastered all over the subway stations.
“Hey, Mom—we could take the train to Maine.”
Rules for 50/50 Chances Page 21