Chapter Five
DAVID
“JAMIE KNOWS YOU,” I tell Eileen the next day. “You have life science together. She sits three rows behind you, and she likes the way you dress. She says you have an artistic eye. Some of your outfits remind her of Van Gogh.”
Eileen looks wary. “She didn’t say that.”
“She did. I swear.”
“Is she a freak?”
I smile. “Maybe. But in a good way. It’s good for us to get to know someone different. She makes me think about things.” I don’t bother trying to explain. I’m hoping she’ll understand when she gets to know Jamie.
Eileen looks at the shelf beside my bed, where I’m displaying my small paper menagerie. “What? Like origami?”
“Yeah. Plus, other things. I like her. You will, too.”
“Okay.”
She shrugs as if this doesn’t matter much to her one way or another. I’m not sure why I care so much. “You have to be nice to her, though. She doesn’t have a lot of friends.”
“I know. I can be nice.”
“I know you can, but sometimes you aren’t.”
“But I know how. Why are you being so weird about this?”
“I’m not being weird. Or if I am, so what? She’s a tenth grader who watches Fred Astaire and Ginger Rogers movies. If you mention a TV show from the last five years, she’ll have no idea what you’re talking about. How often do you find someone like that?”
“Never.”
“Exactly.”
Suddenly, I’m nervous. Maybe this isn’t such a great idea. Spending as much time with Jamie as I have over the past week is confusing. Visiting with my friends is hard; visiting with Jamie isn’t. Some afternoons with her, I’ll look up and realize two hours have passed and I didn’t even realize it. Even Sharon doesn’t stay that long. She hates the disinfectant smell and is scared of the tubes I’m still attached to. She doesn’t want to pull anything out or knock anything over. Back in school, Sharon and I have almost everything in common (three classes, two clubs, plus student council). In here, not so much.
It’s not like that with Jamie, but maybe that’s because nothing in a hospital room resembles real life. To me, Jamie seems like a perfect friend for Eileen—smart and funny, with a good head on her shoulders. But maybe that’s because she’s been a great friend for me. Suddenly I wonder if I want to share Jamie, even with Eileen, who I love and want to help. “You’re right. I’m being weird. Never mind. Skip it. Do dance classes by yourself and see how you like it.”
“No way. I’m curious now. I want to meet this weird girl.”
After Eileen leaves, I think about how hard it’s been lately, seeing my school friends. Every visit, they spend the first minute pretending they’re not shocked at the sight of me. I’m getting used to it now: the inhaled breath, the widened eyes. Everyone starts with the obligatory lie “You look good, David,” then we quickly move on to school topics. Yesterday, Ashwin spent an hour talking about a new crisis on the fund-raising committee. Toward the end, I dozed off, which made me feel bad. I think of Ashwin as my best guy friend, even though we’ve never done any of the things boys usually do—sleep over at each other’s houses or waste whole weekends playing stupid video games. How can I when my breathing treatments mean nebulizing medicines for a half hour every morning and evening? Sharon is the only one in our friend group who knows that my bedroom is lined with breathing equipment and my bathroom shelf is lined with medications. It’s weird to realize this now: No one else has been in my bedroom.
Maybe it’s not so strange. The only time I’ve been to Ashwin’s house was in ninth grade when he invited me over to “make pies.” It didn’t make sense until I got there, and then I understood: the idea was his mother’s. Nervous that Ashwin wasn’t making friends, she suggested this party and bought six pie crusts and the ingredients to fill them.
“I invited two other guys, but they thought it sounded weird,” he said sheepishly. I saw it all then—his mother in the background wearing a sari, religious talismans on the wall. He had his own secrets tucked away at home, just like I did.
We had a great time that day. We ate ourselves sick, and for years afterward, we’ve made jokes about bringing pies to school events. I’ve always meant to become better friends with Ashwin, but I never have. I don’t know why. I was busy with Sharon, or it seemed risky. Like spending more time with him would mean letting him see the truth about my CF, that it was a bigger deal than I let on, and more work to take care of.
Now it feels like it’s too late. He can see the truth, but thinks it’s better to talk about our old subjects. To pretend I’m the same person I was last month even if I’m not.
Jamie was right about origami. To me, it’s more relaxing to sit here, working on something that’s hard and also doesn’t really matter, than it is to see my old friends. I’ve been doing it for two weeks now, and each animal I make is a little better than the last. It’s comforting to line them up. A row of legless creatures, wounded and waiting. Like me.
I also like the conversations Jamie and I have while we fold. They have nothing to do with school or which colleges everyone is applying to. They’re random and weird and make me think. Last time she was here, Jamie explained, “In Japanese, the words for ‘frog’ and ‘return’ are pronounced the same way, so a geisha would fold a frog and give it to a favorite patron to let him know that she would welcome his return.”
I laughed, even though I don’t think she was trying to be funny. “That’s an amazingly strange detail to know.”
“I agree. The origami book I read was from the 1970s. I don’t think the women’s movement had made it to Japan at that point.”
Hanging out with Jamie is easier than seeing my friends. It just is. She doesn’t walk in the door and gasp at the sight of me still attached to these machines after almost three weeks. She doesn’t look at me and see everything I’m currently not—healthy, stable, on top of my game. I know I’m a mess right now. Seeing me sick doesn’t make her sad. Maybe it’s a low bar to build a friendship on, but there you have it. There’s a tube in my chest and a hole in my stomach. All the bars are pretty low right now.
JAMIE
Every time we have a nice conversation, I almost tell David the truth. It’s happened a few times. The words float up, right there, on the tip of my tongue: Something happened last spring after my dad died. At first it was like I was numb and sleepwalking. I couldn’t taste food or understand what anyone was saying around me. I couldn’t read more than a sentence at a sitting. I couldn’t do homework or anything else except compile examples in my mind of how phony my supposed friends were. Finally, during a sleepover, I told them they were shallow and manipulative and I hated them all. I left in the middle of the night, and when I got home, I realized the person I hated most of all was me.
I want to tell him, I volunteer in the hospital because I have no choice. I have to stay busy to keep the darkness away.
I haven’t because I don’t want to scare him.
He might know about brushes with depression because of his illness, but I don’t think he knows the terrifying depths of it. If I tell him I was in the hospital this summer for three weeks, it won’t feel like we have more in common. It won’t mean laughing about hospital food and orange-juice cups with peel-off foil lids. It’ll mean we won’t laugh about anything again because nobody thinks depression is funny except for other kids on a psych ward who laugh more than you might expect, but of course I don’t see or talk to any of them anymore.
I almost tell him the truth.
But I don’t.
Chapter Six
DAVID
APPARENTLY, MY MOTHER IS softening. She’s talked to enough outside specialists to agree with Dr. C’s assessment, and now my parents are doing what’s required to get me on the transplant list. They’re submitting their own health histories and talking to a psychologist about their ability to support me in the year I’ll spend recovering from the o
peration.
“A year?” I gasp when I hear this. “Is that what they’re saying?”
“Yes,” my mom says. “That’s what they’re saying.”
This news sends me back to the message boards on my CF websites. My mother doesn’t think I should spend too much time on these boards. “It’s not good for you to read depressing stories. CF is the only thing you have in common, and you aren’t defined by your disease.” I don’t tell her, I’ve been lying in bed for three weeks, draining bile from my chest and breathing with one lung. At this point, I’m pretty defined by my disease.
Breathing Together is my favorite CF site. As a general rule, the sicker someone is, the more time they have to write posts, so it’s not hard to find other people my age on the transplant list. I weigh where each person seems to be, healthwise—who sleeps with oxygen, who needs it all day, who’s using a bi-pap 24/7. I’m not approved for the list yet, but I’m curious where I’ll end up once I make it on. My number will be determined by how sick I am, which makes it one of those competitions you don’t want to win, but also do. It’s confusing.
Everyone who goes on the list says some version of the same thing: I don’t want to die without trying my hardest to live. They also concede that there are some problematic statistics to consider: a third of transplanted patients reject their new organs right away. Another third develop chronic rejection after a year or so. Only about half of transplanted lungs last more than five years. Meaning a lot of people go through all of this and don’t live that much longer. Even so, everyone on this board still wants to try. I hope to be part of the lucky 50 percent and still be alive in five years, they say.
Five years is the goal everyone is shooting for.
Some people on Breathing Together are already old by CF standards. One woman is thirty-one and married with an adopted child. To me, she sounds greedy, wanting five more years than she’s already gotten. “My goal is being alive until my child turns ten,” she writes. “Is that too much to ask?”
It kind of is, I think. Especially if my goal is being alive next year.
I think about Lester Freeman, the only person I’ve known personally who’s had a lung transplant. I was thirteen when we met; he was the same age I am now, a senior in high school. We were hospital roommates because back then they didn’t keep CF patients apart the way they do now, for fear of spreading our bad bacteria to each other. At the time, he seemed sicker than I am even now, but going on the list energized him. He told me if he got a transplant, he was going to make some changes in his life, which he did. After the surgery, instead of going to college, he moved to San Diego to spend all his time surfing. Three months after the move, he wrote me a note saying he was happier than he’d ever been. “I spend every day on the beach and every night with my girlfriend.” I pull up his old messages now and reread them, which I shouldn’t do, because I know how the story ends: after six months, he contracted an infection in his new lungs that raced through his body and shut down his organs in the course of a single weekend. On a Friday he posted pictures of himself smiling on the beach. On Monday he was dead.
Now that my parents have adjusted to the transplant idea, Sharon is the hardest person to talk to about it. I put off telling her as long as possible. She’s accepted the tube snaking out of my chest, the hole in my stomach, the cannula under my nose. She can look at these things without stopping midsentence and losing her train of thought. But a surgery that will involve cranking up my rib cage like a car hood, cutting out organs, and replacing them with ones from a dead stranger will be harder for her to handle, I fear. She likes to be in control, or at least feel like she is. Getting on the transplant list means you control almost nothing about your life. You wait. You don’t make any big plans. Even little plans are hard, because you don’t know how you’ll feel or how much energy you’ll have.
On the website, people write about this all the time. Thought I could manage seeing a movie today. I was wrong.
I finally break the news to her the day after she gets the fundraising totals from homecoming. Apparently, it went really well—plus they’ve raised more money for senior events than any planning committee in the past—so she’s been in a good mood this whole visit.
“I have a little good news, too,” I say.
She looks up, surprised. “You’re being released?”
“No, not that good. The doctor thinks I’m ready to get on the transplant list. I’m going to try for some new lungs.”
Her hand goes to her mouth. Tears rim her eyes. “Oh my God. Oh, David—”
“It’ll be okay, Share! It means I’ll be able to do things again. I can climb a flight of stairs! I can sit near a candle at a party and not have a coughing fit! I’ll be almost normal!”
She nods with her hand still over her mouth. She doesn’t say anything.
“I might not get approved for the list yet. And if I do, it might take a long time for lungs to show up. It doesn’t change anything right away.”
I don’t want to tell her too much at once. Like how long recovery will take if I get the surgery this year. Or how, after a transplant, you shift from managing one condition (cystic fibrosis) to managing another (transplant rejection), which requires taking more pills (if that’s even possible), and more vigilance. I won’t have CF in my lungs anymore, but I’ll still have it in other places like my pancreas and my liver, which are, at best, only limping along in the jobs they’re meant to do.
Finally, Sharon takes her hand away from her mouth. “It’s great. I’m so happy for you,” she says, even though she’s crying.
I laugh.
“I am,” she snaps, wiping the tears away. “It just changes our plans for this year, that’s all. I’m not crying about you, I’m crying about stupid things, like the winter dance. This means you probably won’t make it back to school in time for that, I guess, right?”
“Probably not.”
“I know that doesn’t matter. I’m being so stupid.” She turns away to blow her nose and wipe her face. When she turns back, she takes a deep breath. “What matters is you getting well. That’s all. Don’t even worry about me.”
I hold out my hand. She comes over and sits down on the side of the bed. This whole time, she’s hardly done this. She’s scared of pulling out a tube or unplugging a machine, I think. I’m so grateful, I almost start crying, too.
“With new lungs, I’ll be able to dance again. Maybe we could go back to Starlight.”
“Why do you keep bringing that up?”
“Wouldn’t it be nice to go back there and dance again? Especially if I’m not breathing like an eighty-year-old with COPD?”
“You never did that.”
“Yes, I did, Share. That’s why we quit.” Isn’t it better to be honest about all this, I think, but looking at her face, I’m not so sure.
“I don’t know if I want to go back. Aren’t we kind of done with that?”
Are we?
She doesn’t look at me, so I’m not sure what she’s thinking. Now that she’s seen how fragile I am, maybe the idea of doing anything like that scares her.
After she leaves, I log back on to Breathing Together, where I find a message board for older teens with a thread titled, The 50K Question—Is College Worth It for Us? The posts seem equally divided on both sides of the question. One person argues that dying in our twenties and leaving our families with a big student loan debt is kind of like “screwing them over twice.” Others point out that college is full of health-compromising issues for us—sleep deprivation, alcohol consumption, lots of young people who don’t wash their hands. “It’s like paying a lot of money to increase all your risk factors.”
A few people maintain that whatever the risk, it’s worth it. “College is the place where most people discover who they really are. You can’t learn about independence living in your parents’ basement.”
For my friends, college—where they’re applying, what their chances are—has been an obsession since last s
pring, when everyone started their school visits. Ashwin fell in love with Brown; Hannah with Bates; Sharon called me from Tufts.
“This is it, David. I can really picture myself here.” I was too sick to go on a college tour, though I told my friends that my parents couldn’t get away from work. Still, I pretended to fall in love from afar with schools in the same area. “They all look great,” I said. I told people Brandeis was my first choice because it was thirty minutes from Tufts, Sharon’s first choice. I couldn’t picture what I’d do in college, so I imagined it being like an extension of high school, where all of us would meet up, wearing down jackets and hats. On my college questionnaires and “interest inventories,” I checked “engineering” and “math” as possible majors, but it’s hard for me to imagine pursuing either one. Those majors sound like a mind-numbing grind of hard work and stress with no real point beyond the lucrative job you’d get if you survive four years of that drudgery. When my posttransplant odds are five years, at best, I have to ask myself: Do I really want to spend four years working toward getting a job I’ll never be well enough to do?
The more I read on Breathing Together, the more I think the pro-college people sound a little deluded. If I only have a few years left, why spend them fulfilling other people’s expectations? Especially when I’ve spent most of my life doing just that. Starting clubs, running for office, piling up AP credits. It all made sense while I was pretending my health wasn’t an issue. Now it doesn’t.
Of course my parents don’t see it this way. A few days ago, my mom asked how the essays were going for my applications. Today she’s at it again.
“Maybe it would help if someone read what you’ve written so far.”
I tell her, as gently as possible, that it might be better to wait.
“Wait for what, sweetheart?”
“Just wait. I want to see how I feel in a month.”
“I don’t understand why you’re lying in bed with all this free time and not using it productively—”
Just Breathe Page 7
