My lungs are angry, and sleep doesn’t feel like it’s on the agenda tonight. I struggle to pull my hoodie on, resigned to another night on the couch—not sure what I’ll watch given that Ryan stole my DVDs—or hope he has because they’re not in the living room when I came to find them the other morning. I guess it’s back to bad late-night TV. This is precisely why I have DVDs in a digital age. I make my way through the semidarkness and discover I shouldn’t have worried because Ryan’s beat me to the couch.
He sits there, hands buried in his hoodie pocket, his black hair curling over his eyes. I’m sure he’s Mr. Popular to go along with his jock status at school. Two cups of tea steam on the coffee table. BSG plays on low, and if I didn’t know any better, I’d swear he was waiting for me. I waver on the line between the hallway and the living room. This feels like something more. Like if I step across this line, I’ll have crossed some Rubicon. I’ll be on his side—start trusting doctors or something.
Like getting your life back, my brain supplies.
I’m ready to retreat, but he looks up and smiles at me. There’s something like relief there, and now I can’t leave. And what’s scarier is I don’t want to. I want to hang out with him and do one thing that I can count on being great: watch BSG.
“This is my spot,” I say, plopping down next to him. He’s jumped ahead several episodes, already deep into the first season.
“You okay?” he asks.
“Skip,” I say. I slump back on the couch to stare at the ceiling. In the last twenty-four hours everyone has been some sort of mad at me. Caitlin. Jack. Mom—I think?
“You only get one skip.”
“Who died and made you ruler?”
“Those are the rules for tea.”
Deep in my chest my lungs crinkle, the little air sacs heavy with virus or whatever gunk that remains a mystery to my doctors. I want tea, but even the thought of hauling my body to the kitchen to make my own is a herculean task.
I slant my eyes toward him. “Since when are there rules for tea?”
He shrugs. “Since I made them up.”
I reach for the cup.
He blocks me with his leg. “Foul.”
“I’m fine,” I bite back.
“Not an answer.” His muscles shake and he can’t hold the pose for long. I catch the ghost of pain across his face. Pain mixed with something darker—hatred? disgust? Maybe Soccer Boy is human after all.
“What rule am I even breaking?”
“I can’t help you if you don’t tell me the truth.”
“The truth.”
“Rule number one—always tell me the truth.”
My lungs split into a cough that leaves my ribs stinging. He leans away, more of an automatic response than anything, I’d guess. “Rule number two,” I choke out between coughs. “Don’t stand between a girl and her tea.” When I can finally breathe without interruption, I sit up. “To answer your question, I’m the same. No worse and no better.”
Except … I’m not the same, because the same would be me struggling to keep Jack away from this place. There’s now a chance I can see him outside of the hospital without actually going home. Morelands can be a sort of safe space where we can both be without the hospital tainting us. Even if I’m not well. Yet. Not well yet. And that curls my lips into a smile.
He offers me the cup—my answer was satisfactory. I accept, our fingers brushing. I pull back quickly; touch is something I avoid. Especially when the person could touch parts of me that are different. I wait for some recognition of what happened to cross his face. Some people flinch, others get curious and want to run their fingers over my skin like it’s a priceless jewel. Ryan doesn’t even notice.
And it’s a relief.
Even Caitlin couldn’t help but examine my hand the first time we met. Oh, she offered up her own, comparison and all that, but I’ve never had someone not remark on it.
“Except?” Ryan studies me and seems to see right into my thoughts.
“Thinking about what’s different,” I say, abiding by his new rules. The things I will do for tea. And someone who listens.
“Progress, finally.” He struggles to raise his arms in victory. Only then do I realize he thinks I’m talking about listening to doctors, and maybe in a way I am. A small lie, because some things should be just for me.
“Not like that. I mean yeah, I want that. But it’s more like a brief reprieve—enough to see Jack. Assuming Mom lets me go.”
“Hmmm.” Ryan nods like he understands, but his eyebrows draw close to his eyes like he wants to say more.
I blow on my tea and want to know what he’s really thinking. So I keep adding to our growing list. “Rule three—if I have to tell the truth, so do you.”
“You’re making all the rules now?”
I pull out my phone and start a new message to him. “And writing it down to hold you to them. So tell me, how are you?” I ask. He wants to play this game, fine, let’s play.
Ellie
Rule 1: I will always tell the truth.
Rule 2 (which is bogus): Don’t stand
between a girl and her tea.
Rule 3: You always have to tell the truth.
I hit send and watch him look at the message and scowl. He lets out a breath. “Waiting on test results and I couldn’t sleep.” Not for the first time, I wonder if he tells this sort of stuff to his friends. Does his friend Sarah get to hear this, and what advice can she offer? Or am I the only one who hears his confession?
“Worried?”
“The best doctors in the world are here. They’re going to figure it out.”
“Not an answer, and I’m pretty sure you’re now in violation of rule three,” I parrot back to him. Doubt creeps into the corners of Ryan’s face, pulling at his eyes and lodging his lip between his teeth. What is going to happen to Ryan when he realizes that medical dramas often leave out that medicine is a science? It’s full of hypotheses and sometimes not a lot of answers. Hopefully, he’ll get answers. Me, I’m used to a lot of unknowns. That word squeezes in between all the others in my medical charts.
“Why do you hate doctors? What did they ever do to you?” he asks, still avoiding my question.
I run my finger around the lip of my cup. What did they do to me? Where to start—bigger question, where to stop? “You know people always tell you to have faith, but they never tell you what happens when doctors don’t figure things out. That’s when the blame game comes out. You didn’t do something right. They stop having time for you; stop believing your pain is real; stop trying. Doctors stop being gods and leave you in the rubble of their empire.”
“How long have you been practicing that last part?”
I scoff. That’s what he took from my speech? “Just wait. I’m sure if they can’t find answers, the litany of how this is your fault will come out.”
“Why is everyone angry at you?”
I cut him a sideways glance. Deflection—again. He motions for me to go on. “My mom wants me to have surgery—and I’m still struggling, but doing it. Caitlin is angry because I didn’t tell her about Jack or you. Jack is angry because I’m here.” I stare at my hands picking at my chipping nail polish. Is that why Jack’s angry? He’s angry that I can’t tell him things, but I know the doctors’ prognoses won’t make sense to him. If I weren’t here, we wouldn’t have this issue. Ryan’s gaze weighs on me like one of those lead aprons they give you for X-rays. Somehow, I doubt this will be as protective.
“That’s a lot.”
“Yeah, I mean…” This is what I’m not used to. Someone just getting it, admitting it’s a lot, and not trying to talk me down, to make me see the other side—the brighter side. Just getting that, right now, this sucks. A. Lot.
“What’s up with your mom?”
“Well, you know she wants me to have surgery—she also blogs about it like she can’t handle me, so she has to tell my business to family, real-life friends, and strangers on the internet. She never stops to think what those things might do to me.”
“What about what they give to her?”
“This is not a sport.” My anger spikes; wasn’t he supposed to be on my side? But then again that’s the other edge of this whole thing, that Mom has a right to complain. I just … wish what brought her happiness didn’t ruin mine.
Ryan holds up his hands in a T-shape. “Time-out. There are no sides, but your mom is dealing with a lot. If this were a sport, your mom would be your coach. They talk to other coaches to try to get the best results. They talk to other people to let them know how great their team is.”
I squirm in my seat, his words hitting all my sore spots. I know all of what Mom does is about me and this is how she deals with caring for me. “And when you fail, does the coach get to feel as bad as you do? Do you feel bad for letting them down?”
Everyone wants to feel sorry for Mom, because of how hard it is to take care of a disabled kid. And I get it. I’m not easy. “When I was about two, I got my first Milwaukee brace—it’s basically some metal and plastic wrapped around my body, meant to teach my spine to grow a new way.” Ryan looks lost. Not surprising. “I had to wear it for the majority of the day from when I was two to when I was twelve.”
I hated it.
I still hate it.
“What does that—”
“My mom was the one who put me in it. And do you know how many times I’ve been reminded of how I screamed at her? It’s one of her recurring stories. For about five years, I screamed and threw a tantrum every day because I didn’t want to wear that stupid brace and she made me.” There’s every reason why I should cut Mom some slack, because she’s done so much and given up even more. And yet every time I get a notification for her stupid blog, I hate her just a bit more. Every time I’m used to make money for other families … Just because she saved my life doesn’t mean she gets to own it. And then I hate myself for how much she cares about me.
“It was for your own good.” There’s no judgment in Ryan’s tone. No hesitancy. Not so much as a hint of what he’s feeling. It’s just a statement. A pause that he’s forcing me to take to make me think past the anger of old transgressions.
“Yeah, sure, but am I always going to be held responsible for my actions as a toddler?” Anger singes the edges of my words. He can be nonjudgmental all he likes. Me, I’m very much coming down on the side of judgment, and Mom has been failing for a while. Time to make him see that. “She still writes about those stories. When I was in sixth grade my mom wrote a whole long post about me. About surgery—what it was like. There were photos. Do you know what happened to me? All my friends started asking questions. It was bad enough I showed up with a frame on my arm to school—do you know what that is?” The words come out of me in a pile, each one stronger than the next, unleashing years of stored-up rage. I pause, waiting for an answer, trying to catch my breath. I feel like I’ve just run a race. I push myself forward.
“No, I didn’t think so—it’s six titanium pins shoved perpendicular through my arm attached to screws. You turn those screws every day.”
Ryan’s jaw hangs open, but I don’t stop. I’ve never told anyone this, never knew how. But here I am ready to spill it all.
“People tell you to just act normal and no one will notice how different you look. But they never stop telling the stories that keep your differences alive. If I was the monster of my mom’s life as a toddler, she made me into a freak in sixth grade. There were some rumors—about what happened to me, what I had—what was wrong with me. If my family hadn’t moved, if my dad didn’t get a better job, I wouldn’t have had any friends.”
This story turns my anger into tears. I didn’t know how to tell Mom that, or even Dad. Hell, anyone. I read enough books; I knew what happened to kids like me. Writers seem to have only two ideas about disabled people: we die or we’re completely cured. The last is not an option for me, so I guess death it is. There are no happy endings for us. Those thoughts I keep locked away, too afraid that if I let them out, I would have to face their reality. I am alive because of a lot of calculated risks, experiments, and the sheer luck of being born in this decade. Kids with VACTERLs even five years before me are not alive. Caitlin knows a handful of others who died or routinely escape death by some miracle of modern medicine.
On top of knowing just how breakable I am, that my life just might be borrowed time.
But talking about that, any of that—only sends Mom into a spiral.
I stand up, wanting to run away as fast as I can. I make it all of five steps before he calls after me. “You’re not really a team player, are you?” He pushes himself to his feet and wavers. He holds still, waiting for his balance to return.
“Excuse me?” I sniff and brush away my tears with the back of my sleeve, prepping for a fight. Did he hear anything I just said?
“What I mean is—you don’t feel like you can rely on anyone. You choose to face everything alone.”
“I am in this experience alone. We are in this alone. Does my mom have to go into surgery? No. Do my friends have to spend time at Coffman every year because their genes got fucked up in development? Hard no. What part of any of this is a team sport?”
Ryan holds up his hands, trying to calm me down. “You never played sports, did you?”
I cross my arms over my chest. “For your information, I couldn’t play contact sports. Want to know why? One kidney.” I bite the words out, each one stoking the anger flaring in my chest.
“Lucky. My parents put me in every sport they could. Basketball, baseball—”
“Soccer?” I supply.
A smile latches on to the corner of his mouth, but he’s doing his best to suppress it. “Yeah, soccer stuck. But here’s the thing, we all have our roles to play on the team. Some of us are defenders, some of us play offense.”
“You are speaking a foreign language to me.”
He sighs again and gives me a dark look, his eyes going hard like the blackness of X-rays. I motion for him to go on, not apologizing. He’s the one who wanted me to tell him the truth. “Some of us are meant to score points—offense. But we win as a team. Doesn’t matter who scored or who defended the goal—we all have our parts to play.”
“Are you saying my life is like a soccer team?”
“We’re all trying to help you, but we can’t if you don’t want to give too.” He leans back on the couch and seems to pray to the ceiling for guidance. “Ellie, I am on your team. No matter what. You want to yell at me, fine. Cry, I can take it. Because I think you need someone.”
I pull back and narrow my eyes at him. “You did that on purpose—the whole ‘not a team player’ thing.”
He ducks his head, his black hair falling in his face. When he looks back up at me, he lets go of his smile. “You’re not as complicated as you think.”
I gape at him, open-mouthed. No one has ever said that to me. I think Caitlin has tried, but I always wanted to protect her so I just clammed up. What is there to be angry at if I don’t let it out?
“Stick with me and I’ll get you back for your party.”
He holds out his hand like we’re making a deal, a bargain. Everything is messed up and he seems to be offering me the only way through this.
“Count me in, Coach.”