“Yeah.” Eileen recaps her lipstick and shrugs again. “You’re right. She’s probably not worth wasting my lipstick on.”
Eileen used to like Sharon when we first started dating, but now she makes comments like this. I’m not sure why.
I sit down on the bed. My G-tube surgery is scheduled for tomorrow morning, which means in twenty-four hours, in addition to looking horrible, I’ll also have a hole in my stomach. I feel like crying. I wish I could ask Eileen for a hug. She used to be the huggiest little girl I’ve ever known, sitting in my lap during my doctor’s appointments so I wouldn’t get scared, but that was all a long time ago.
“Thanks for sticking around, Lee-lee.” I’ve been coughing most of the day. My voice sounds like I could audition for an anti-smoking ad.
“Mom and Dad will be right back. They went downstairs to get something to eat.”
“That’s okay. This gives us a chance to talk. You and me.”
She gives me a funny look. “About what?”
She sounds nervous. This whole fall, we never talked. I gave her rides to school in the morning, but never after school. Usually I had club meetings or else I was driving Sharon home, which meant I couldn’t take her because no one has to give their little sister a ride when they’ve got their girlfriend who they don’t see enough of as it is. Those were my rules. No wonder she doesn’t mind telling me the truth about how I look.
I try to think of a topic. “How about G-tubes. Do you think they’re gross?”
Eileen widens her eyes and smiles. “Not at all. I told Dad we should pour a beer in there and see what happens.”
Eileen likes to say shocking things to get our parents’ attention. Unfortunately, it works, so this year she’s started doing shocking things to up the ante.
“Did he laugh?” I feel a coughing fit coming on. I hold my breath so it’ll pass.
“Of course not. He gave me the David’s-very-sick-we-can’t-make-jokes speech.”
Holding my breath doesn’t work. Laughing turns into a coughing fit instead. She watches me carefully. Unlike Sharon, Eileen doesn’t look away. “You’re not that sick, right? This is just one of your tune-ups, I assume.”
I shouldn’t be surprised, but I am. I’m not doing a great job of talking about what’s happening with my friends, but apparently our parents are doing an even worse job. I go for some water to calm my heaving chest. “It’s a little more than that this time,” I say through my heaving coughs.
She narrows her eyes. “Is that why Mom and Dad are being so weird?”
“Why—what are they doing?”
“Mom keeps calling doctors, saying she wants a second opinion, and Dad keeps going to Whole Foods and buying food for you.”
This sounds about right. He’s been annoying the nurses for days, filling their refrigerators with containers of food he’s hoping I’ll eat. What I don’t understand is why they haven’t told her the truth. “I’m sorry Lee-lee. Seriously. They’re screwed-up, and I know my being sick doesn’t help.” I don’t have the breath right now to tell her anything else. I need to, though. We need to start telling each other the truth.
She closes her eyes, and for a second, I think she might start to cry, but no. Eileen is fourteen now and doesn’t cry anymore.
Our parents’ mistakes with Eileen started so long ago, it’s hard to know exactly where they began. Seven-year-old Eileen would test a limit, get punished, and then, riding on a wave of parental guilt, get whisked out for Froyo, where she’d wordlessly ask, Can I fill a cup with all candy toppings and no Froyo?, to discover the answer: yes, apparently, but with an eye roll.
It’s like we’ve had two sets of parents. Mine have their eyes trained on me all the time, attuned to every numerical fluctuation in my life: PFTs, GPAs. A dip in one and we spend a whole dinner discussing next steps. For Eileen, who established herself as a solid-C-student-reaching-for-Bs years ago, they’d just as soon not look too closely at anything, so they don’t. “Oh, Eileen,” they say, and then feel guilty at what their tone implies: exasperating Eileen. Overindulged Eileen. It must be hard for parents to resent a child for seeming spoiled and not recognize their own hand in the problem.
I suspect that’s why they’ve adopted the myopic, hands-off approach they maintained all last year, until the end of August, when the police brought Eileen home at three o’clock in the morning wearing only a bathing suit bottom and two tank tops.
“Found her at a party with all older kids,” the police said. “You should probably keep an eye on this one.”
Of all our parents’ ineffectual responses to Eileen’s transgressions, my dad whispering to me, “Should we ask her where her pants are?” might take the prize.
You’d think such a warning would have produced a bigger response than it did. Instead of being angry, they took Eileen out for a “special lunch” to talk. Later, Eileen did a hilarious imitation of Mom avoiding the subject of the party the whole meal. Though we laughed about it, we still haven’t talked about what she was doing at a party with older kids in the first place. I’ve tried to fill in the gaps that our parents miss, but there are some even I can’t bear to look at. Some weekends neither parent can remember which friend Eileen is supposedly spending the night with. This fall, Dad read an item from the police blotter in the paper about a party by the railroad tracks. I watched Eileen’s face ready itself for the confrontation: Yeah, I was there. I wasn’t doing anything wrong. And then it never came.
To me it’s so obvious that I’ve tried to find a way to say to our parents: Parties are pretty appealing to Eileen, have you noticed? Alcohol, bands, boys—they’re all like a cup full of candy toppings these days. Hard to resist and definitely more interesting than getting good grades. Thinking about this worries me. If I’m in the hospital for a long time, I’m scared that Eileen will go down a self-destructive path, because in our family, dying or coming close gets you the most attention.
As screwed-up as all this is, Eileen has never resented me, which still surprises me. When she was younger, she used to sit with me through my treatments, thirty minutes a day, morning and night. I couldn’t talk because I was breathing medications from a nebulizing machine, but she didn’t care. She’d sing or tell her own stories or lean with her forehead against my buzzing machines.
I want to talk about all this now, but I’m not sure how to start.
“This isn’t one of my regular tune-ups. My lungs are getting worse, and I’m going to be in here for a while. There’s nothing I can do. You have to stay out of trouble.”
“What do you mean?”
“You know. Maybe find some new friends who aren’t into breaking the law.”
“Are you saying I should join some clubs?” Maybe one of the reasons Eileen stopped liking Sharon is because she was always suggesting that Eileen should join more clubs and “get more involved.”
“It’s not a terrible idea.”
She makes a face to say: Yes, it is. Eileen once told Sharon that clubs are for people who are too anxious to have real friends.
“I’m saying maybe you should find things to do that aren’t dangerous.”
“Like what?” She smiles, even though I haven’t said anything funny.
I’m stuck. It’s impossible to imagine her volunteering in the Smile Awhile office without thinking it would be funny to sneak her own DVDs onto the cart and offer five-year-olds Reservoir Dogs or Kill Bill.
“I don’t know. I don’t understand your friends. I don’t know what you guys were doing at that party in August.”
“Aysa made me go. There was a guy she wanted to see, and then she left with him after ten minutes, so I had no way to get home.”
She doesn’t say the rest. Except with the police.
She looks sad. Aysa used to be her best friend. Why would her best friend think it’s okay to leave her alone at a party where everyone is older and she knows no one? I still remember Eileen as the little girl who worried so much about her stuffed animals�
� feelings she rotated who got to sleep on her pillow every night. I also remember the ways she used to help take care of me. How she’d line up my pills in the morning and put a gummy worm at the end. Even if our parents haven’t told her what’s going on, she understands more than they think. She knows what I’m up against. That’s why she’s here.
We don’t have parents who know how to talk about the messy truths in our lives: that one of us is dying, and one of us sometimes acts like she wants to. We have to talk about it with each other.
“You’re a good person, Lee-lee. You deserve to have real friends who won’t do crappy things like that.” I can’t tell if she’s listening. She seems to be studying the ends of her hair.
“Yeah, maybe. I kind of hate my friends these days.” She looks around the room like there’s something else she wants to say but she’s not sure what it is. “I don’t know. Sometimes it’s like I’ve spent all this time with them and we don’t really know each other. I’ll say something, and everyone will just stare at me.”
It’s strange that she’s saying this. This is exactly how I’ve felt every time my school friends come to visit. I spend all day waiting for them, and then when they get here, I can’t understand what they’re talking about. When I tell them something funny that a doctor said, they don’t get the joke. I wonder if what’s happening to me feels like it’s happening to Eileen, too—where everything ordinary seems wrong all of a sudden.
“What do you talk about with your friends?”
“Nothing really.”
She shrugs and flips through a few pages of her magazine. I don’t know how much longer we’ll be alone, but suddenly I want to say something important in case I die in the next six hours, which isn’t likely but seems possible, as sick as I feel. The problem is I’m not sure what I want to say exactly: We didn’t get super lucky in the parent department. You have to look out for yourself. Don’t give up on school just because it’s hard.
What I really want to say is: Don’t let me (and my illness) define you. Find what you’re good at and throw yourself into that.
Or maybe this: Mom and Dad don’t see the truth like you and I do.
I open my mouth, but instead of words coming out, I have a coughing fit that goes on and on. For a second, I’m afraid my nose will start bleeding or I’ll throw up in bed, both distinct possibilities in this new fragile body of mine.
When it subsides, Eileen’s eyes are wide. “I’ll kill you if you die” is all she says.
Our parents aren’t the only ones bad at talking about what matters.
JAMIE
This is the first time I’ve seen David since we started emailing. It’s my regular Smile Awhile shift, so I don’t have to worry that walking into his room might be weird.
“Knock knock,” I call. “Smile Awhile is here.”
This is what we’re supposed to say in every room we walk into so no one mistakes us for a nurse or a doctor. As if anyone might.
He looks thinner than he did last week, and paler. His face is gaunt, like he’s losing weight in places he shouldn’t lose weight—his shoulders, his eye sockets. At the same time, his cheeks look puffy. It makes me realize that I never took his picture last week. When I stopped by, Sharon was here, so I wrote him later to apologize, and he said it was fine—his sister was happy to take as many bad, unflattering pictures of him as he wanted. Now it’s pretty clear, whatever miracle I promised a G-tube would produce hasn’t happened yet.
A few days ago, my mom told me she’d talked to her old friends on the floor and, yes, I was right, David has CF.
“It’s okay to tell you because it makes him an ‘extra precautions’ patient. Masks and gloves are recommended when you visit. They’re not required, but you should definitely wear them for his sake.”
He’s sitting in the dark, which I assume means he must have been sleeping when I walked in. “I’m sorry,” I whisper through my mask. “I can come back.”
“No,” he says softly. “It’s okay. Don’t go.”
I leave my cart full of DVDs by the door and step closer to his bed. “Are you okay?”
I haven’t heard from him for two days. Yesterday, I wrote him but tried to keep it casual. Just checking in to see how you are. He never answered. I assumed he remembered what grade I’m in (tenth) or who I really am (nobody) and realized we shouldn’t pretend to be friends, online or otherwise. Now I wonder if it’s something else completely: He’s sicker than I realized.
He’s attached to more machines than he was last week. His breathing is shallow, like lying here in bed is making him pant. “I don’t want to be alone. I thought I did, and I told people not to come . . .”
His voice is thin, like he’s not getting enough oxygen. He should be wearing a mask, not the cannula. I almost suggest it, but he obviously wants to talk, and he wouldn’t be able to wearing a mask.
“I don’t know what to do. I can’t stand having visitors, and I can’t stand being alone.”
I know this feeling. I pull a chair over and sit down next to his bed. I may not have many (or any) social skills, but I know how to sit quietly with someone who is sad.
For a while, we don’t say anything. His eyes are shiny but he’s not crying. He wouldn’t do that in front of me, of course. He might be sad, but he hasn’t lost his mind.
Or maybe he has.
“I think I’m losing my mind,” he finally says.
I also know this feeling. I know it doesn’t help when someone else says, You’re not.
Instead, I say, “Okay.” I see a pile of textbooks in the corner that looks as if it hasn’t been touched. Calculus on top; physics underneath. I’m not going to tell him his schoolwork matters now, because it doesn’t.
“You’ve got a lot of time on your hands. Maybe you need a project. Something that requires using your brain but doesn’t tax it too much. If your brain is busy, it’s harder to ruminate. Ruminating too much isn’t great for anyone.” I know a lot about this, obviously. I look back at my cart. “I have something we could try if you’d like.” I pull out a box of origami paper and put it on the rolling table in front of him.
His mouth flickers, like he wants to smile at the idea of origami, then he changes his mind. “No thanks.”
“Maybe you’re a little intimidated by origami. That’s okay. I was intimidated at first, too. It requires some dexterity. I don’t know how good your fine-motor skills are.”
He narrows his eyes. “My fine-motor skills are fine. They’re the only thing that is.”
“Well, good. Then you should try it.”
He looks at me for a long time. I feel my armpits tingle. I’ve never sat so close to a boy and had him really look at me.
“Is this what they teach you in Smile Awhile school?”
“No. There isn’t any Smile Awhile school. There’s six hours of training that feels like sixty, but, no, there’s no school.”
I wait for a bit. I know that when someone is in this state of mind, “suggestions” can feel like water filling up your brain and drowning out any other thoughts. They can make you angry and sad at the same time. Still, I have a hunch about this. I move his table closer and slide a piece of origami paper toward him. I take my own paper and demonstrate a few basics: a mountain fold, a valley fold, a few reverse folds.
After a minute of watching, he starts to fold, too.
“What are we making?” he finally asks.
“I’m not saying. One of the first lessons origami teaches is the pleasure of delayed gratification. Sometimes you make a hundred folds before you see anything take shape.”
We keep folding for a while until, without looking at me, he says, “Do you know what I have? Did anyone tell you?”
“My mom did, yes. But only because you’re on precautions. Ordinarily she wouldn’t.”
“Is that why you’re sort of wearing the mask?” He almost smiles because I’m not wearing it anymore. It kept falling off, so finally I’ve let it stay bunched under my chi
n.
“Should I put it back on?”
“No. You won’t make me any sicker than I am, I promise.”
I keep folding, staying a few steps ahead of him so he can get the idea of where we’re headed: with two reverse folds, what looks like a broken kite becomes a perfect, long-necked bird. I hold it out for him to admire.
He smiles—a real smile, for the first time since I walked into the room. “Wait, are you pretty good at this?”
I smile back. “I don’t want to brag, but yeah.”
“Like are you one of the best teen origamists in the country or something?”
“The best, actually.” I laugh. Behind his nose tube, he laughs, too. It’s a nice feeling, cheering someone up. I don’t know if I’ve ever done it before. “No, I just started this summer. But I like that it takes a little concentration, and you definitely get better with practice.”
He nods and looks down at his own. He’s made a mistake somewhere; it doesn’t look right. “Is there such a thing as abstract origami? Where it doesn’t technically look like a bird but it captures the essence of bird?”
“No. There’s really nothing like that. If that happens, you pretty much throw it away and start over.”
“Wow. This isn’t stressful at all then.”
DAVID
To make the bird Jamie’s just finished out of the mess of folds I have, she has to take me back, step-by-step. “Are you keeping up with your homework?” she says as she unfolds my mistakes.
“I don’t have much. I took light classes this semester because of college apps.”
“And how are those going?”
I point to the bag draining bile from my chest. “Not great. It’s hard to get excited about applying to college when you may not have lungs to breathe with when you get there.”
I never talk like this. I never do things like point to a bag of disgusting bodily fluids and make someone look.
Jamie looks down and shrugs. “Right. But working on the assumption you’ll get better, what colleges are you interested in?”
“I’m pretending Brandeis is my number one choice.”
Just Breathe Page 4