Two weeks ago, I was okay. Or at least I could pretend. I was standing in the cafeteria, doing my lunch announcements, planning for homecoming. Then, one afternoon in AP Bio, I felt a new pain in my chest, like a tiny man with an ice pick was moving around my lungs, stabbing wildly. It was so bad I broke out in a sweat. I thought I might pass out in the middle of class. I held on to my desk and concentrated on not throwing up. And then . . . it passed.
By the end of class, I could stand up. In the hallway, Sharon asked why my shirt was wet and I laughed.
“Just running some wind sprints,” I said.
She raised her eyebrows in surprise. Sharon is the hardest part of all this. We’ve been together for two years, and she knows how bad this might get, but neither one of us wants to be the first to say it.
That day, Sharon didn’t ask again about the shirt I’d sweated through even when we were alone in the car, driving home. I didn’t mention it, either, or the tiny new hissing sound in my chest, like one of my lungs had popped a hole. For the next two days, I didn’t say anything to anyone. The pain had shifted to a dull ache—new but not alarming. On Wednesday night, I went to sleep thinking, Maybe this is nothing. Maybe I’m okay. Then, in the morning, I woke up so sick I coughed blood into the sink and crawled back to bed, where I vomited on myself and thought, I can’t pretend anymore.
The first time Sharon visited, she came with our best friends, Ashwin and Hannah, which meant that—for another day, anyway—we weren’t going to talk about how sick I truly am. We kept it light, like this was one of my usual hospitalizations. A round of antibiotics. A “tune-up,” as we call them. I saw her eyes slide away from the drainage tube in my chest and the new machines I’m attached to. By the end, it was hard for her to figure out where to look.
We talked mostly about school issues and how I shouldn’t worry about anything while I’m in here. Ashwin will cover student council meetings and lunch announcements; Sharon will run the senior-class-committee activities.
“You just have to get well, that’s all,” Sharon said.
There was a surprising firmness in her voice, though. I have to get well. She believes she can will these things to happen.
And maybe she can. Telling her it will be harder for me to get well this time isn’t something I can do in front of other people. It will throw us both off. It might even make her angry. It’s hard to predict and better to avoid.
All of which means, I’m writing this girl Jamie because it’s nice to talk to someone who isn’t horrified by the shape I’m in. I’ve never told her any lies or pretended to be fine around her. These machines I’m attached to and the tube snaking out of my chest aren’t scary to her. She’s seen puke in a nebulizer mask, which is at least slightly more unsettling than anything going on with my body right now, though not by much.
Chapter Two
JAMIE
“WHAT HAPPENS TO KIDS with cystic fibrosis?” I ask my mom, trying to sound casual. We’ve been living in this apartment for only six months, but its tiny size means we’ve developed new habits, like eating breakfast together, which we do every morning now.
“Why? Have you got one on the peds floor?”
“I don’t know. Maybe. I’m just curious.”
“It’s a tricky one. There’s a wide variation.”
“But in your experience—”
“In my experience it’s pretty bad.”
“How bad?”
“It gets worse as they get older. Their mucus gets very thick, and their bodies can’t clear it, so they get chronic infections in their lungs. Usually, they’re okay when they’re young, and then, when they hit adolescence, the infections get worse and put them in the hospital more. They keep getting weaker until eventually their lungs wear out.”
“But the average life expectancy is older now, right? Because of new treatments?”
“Yes, some people live into their thirties, but we don’t see them as much. The ones I knew got sick in high school and were trying to make it to college.”
“Did they?”
“One did! Her name was Fiona—I remember her. She was lovely. Very smart.”
“And the others?”
She hesitates. “The ones I knew didn’t make it, no.”
I know my mom will probably ask around and find out who I’m talking about. She won’t tell me his story, but she’ll know it.
Rita, the psychiatrist I haven’t seen in almost a month, said the secret to going back to my old life was to start living it and, sooner or later, I’d feel like my old self. It was probably good advice, but the problem is: I don’t have my old life. Or I do, but it doesn’t look anything like the one we’re living now. We used to have a small but nice three-bedroom ranch house. We owned two cars, and no one had to share a computer.
Since my dad died a year and a half ago, we have none of these things, but we do have bills we’ll be paying off for years from credit cards he never told my mom about. When the bills first came, she asked me if I recognized the charges. It looked like art supplies and groceries, the usual things. It took me a while to understand he’d been buying more of everything. Spreading it out over different cards. It didn’t make sense, but a lot of things didn’t make sense after he died.
My mom stopped talking about money (with me at least) and tried to focus on the positive. “It’s good to get a fresh start,” she said when we moved into this apartment complex next to the hospital, where the dumpster doesn’t get emptied until the trash spills over and takes up three parking spots. She works so hard to stay upbeat that I try to as well. I don’t talk about the other factors in my life that have also changed this year: the friends I no longer have, or the lunches I eat perched alone at the end of a table full of people I don’t know.
I don’t tell her that I sit in some classes with an open notebook in front of me and afterward I have a blank sheet and no memory of anything that was said.
I don’t say that it’s hard to remember my old straight As or why they once felt like little prizes when I mostly got them for neat homework and lab reports three pages longer than they needed to be. I don’t tell her the homework I turn in these days is scribbled illegibly ten minutes before class. It would break my mom’s heart more than it’s already broken, and I can’t do that to her. Which means I should concentrate and do a better job, but I can’t do that, either, so I’m not sure how all of this is going to end.
The odds are: not well.
For now, though, we’ve got a rhythm. Neither one of us spends too much time alone (unless you count school for me, where I’m alone for most of the day). After school, I come to the hospital most days, where I tell my mom some version of the same thing: my classes are going better than I expected, and yes, we were right to sign me up for a non-honors, lower-stress course load.
“I’m fine, Mom. I promise,” I say, because I am. Or at least fine enough that I don’t spend an hour (each way) traveling on a city bus to see Rita these days. Instead, I try to be like my mom and stay busy and cheerful. Saying that makes my mom sound superficial, which I used to think she was, but I don’t anymore. Now I understand it’s a survival strategy and she’s trying to survive. We both are.
Another thing Rita said before I left the hospital this summer was that I should trust my instincts. “You might not have a great deal of experience with friendships, but you’re smarter than you realize about other people.”
I’m not sure where she got this idea, because she couldn’t be more wrong. If I’ve learned one thing this year, it’s that my instincts about other people are horrible. Worse than horrible—they’re catastrophically bad. That’s why I spent my first month of school avoiding the girls who used to be my best friends and doing nothing with anyone after school. Usually, I do my homework at the hospital because, even if you don’t have a problem with depression, you might start to develop it if you spent too much time alone in our apartment. Two days a week, I volunteer. The other days, I meet my mom for dinner and make up
stories about school so she won’t worry too much. If she asks how I’m doing “making new friends,” I tell her it’s slow but I know it’ll happen.
“Don’t worry about me,” I say. “Seriously. I’m really okay, and plus, worrying doesn’t help.”
Am I okay? It’s hard for me to judge. At lunch I watch my old friends sitting at a table by themselves in the corner. I think about the only conversation I’ve had with any of them this year, when Bethany found me at my locker the first day of school and seemed so friendly at first that I thought we were going to pretend we’d forgotten what happened at Missy’s sleepover last spring. She asked me how my summer was and what classes I was taking. I studied her face for clues. Did she really not know how my summer was? I couldn’t tell.
Then Bethany said, “I just wanted to tell you, Missy thinks it’s a bad idea for you to eat lunch with us. She’s still pretty mad, so I said I’d talk to you. Is that okay?”
Is what okay? I thought. I didn’t understand what she was trying to say.
Later I figured it out. She meant, Is it okay if you don’t eat lunch with us? Apparently, she also meant, Is it okay if we all ignore you and don’t say hi even though we were best friends last year? Because that’s what they did.
Rita was wrong about me having good instincts for people. I’ve got a long history of having no instincts about people. Every Tuesday and Thursday afternoon, I roll a cart full of games, books, and DVDs into rooms with sick kids. Usually, they ask why my movies are so old and my games are so bad. No one even looks at the books. Most kids aren’t here long enough for me to learn their names or get to know the parent sitting next to their beds. Bad DVDs can do only so much, I’ve learned. I might wear an apron with a happy face on it, but I’m not sure if I’ve ever cheered anyone up.
Until now.
I can’t stop thinking about this simple fact: helping David shifted something inside me. It made me feel stronger. For a few days now, I haven’t thought about myself or my own problems, which is such a relief it’s hard to describe.
I can’t tell my mother about this, though, because I’m sure it won’t last. I won’t really become friends with David or anything like that. He’s senior class president, with a lunch group of friends that sometimes spreads out over two or three tables. He’s popular in a way that I couldn’t even, in my wildest dreams, imagine being. I know how imbalanced this is. If I say anything to my mom, she’ll tell me to be careful and remind me that I’m fragile, which I already know. I also know that, for some reason, I don’t feel fragile when I’m emailing with David. I feel like a different person. Like some version of myself I imagined becoming when I first told my dad I wanted to go to real school with regular kids and stop spending all my days making art with him.
DAVID
I was right. The tests are back, and the news is bad. Dr. Chortkoff doesn’t look up as he recites the list from his tablet: I have a collapsed lung on one side and an infection on the other. My pulmonary-function tests are lower than they’ve ever been. I also have a blockage in my intestine that’s keeping my pancreas from doing its job and is the reason I’ve lost so much weight recently.
It’s a lot to take in. I feel my throat tighten.
“Is anything working?” I say to fill in the silence.
“Your teeth look good,” he says. “But of course I’m not a dentist.”
I like jokes like this, but my parents don’t. They’re furious. They want to know what he’s going to do about all this. It’s my senior year, they remind him.
“He can’t spend the next six months sick,” my dad says.
My dad has a hard time sitting down in the hospital. He spends most of his visits pacing around rooms, which he’s doing now.
Dr. Chortkoff keeps going. “In my experience, there’s never really a good time to get sick. It happens when it happens. There’s not much we can do to control it.” He looks at my mother as if he’s trying to measure her state of mind. “There’s one option I’d like to broach with you all. Given these numbers I’m looking at and the overall decline in David’s health since last spring, I think it’s time to talk about getting him on the organ donor list for a lung transplant.”
My mom gasps and puts her hand over her mouth. I’m shocked, too, and I’m the one who’s been sleeping twelve hours a day and feeling terrible. Does he really think I’m that sick?
He stares at his tablet screen, as if he can’t bear to see my mom’s eyes fill with tears. Even I have to look away.
My mom believes that having a positive attitude is 90 percent of staying healthy. When I was younger, she used to tell me I had a different kind of cystic fibrosis than the other, sicker kids I saw in the clinic, some of whom were already wheeling oxygen tanks beside them as they played with the toys in the waiting room.
“We’re lucky. Your CF is milder,” my mom would whisper when we got to the elevator.
For a long time, I believed her because mostly I was healthy. I was thirteen the first time I was hospitalized, which is later than most CF kids. After that, it was once or twice a year for a course of IV antibiotics when an infection hung around too long, but it never felt scary or even like a big deal. Dr. Chortkoff called them tune-ups, so we did, too.
“Four days of this, and you’ll be raring to go,” he’d say.
Usually, I was.
But last spring, I spent a week in the hospital and came out with just as little energy as I crawled in with. “It’s your PFTs,” Dr. C said, meaning my pulmonary-function tests. “They’re not bouncing back yet, but they will. Give it time.”
They haven’t bounced back. This lung-transplant idea shouldn’t be such a shock, but it is.
I press the cannula against my lip, hard. I don’t want to cry in front of Dr. C.
“He’s too young for that,” my mom snaps. “He’s been healthy for seventeen years. He does his lung treatments religiously. He shouldn’t be a transplant candidate for another ten years!” Her eyes have a wild fire behind them, as if she’ll do anything to make her nonsensical point: I’d rather have him die than admit he’s sick enough to need this.
My dad, pacing back from the window, tries to sound more reasonable. “What Linda’s trying to say is that this is David’s senior year in high school. He’s the president of his class, and he’s got so much on his plate—not just schoolwork but also college applications, and homecoming is right around the corner. That might sound silly to you, but—” He stops for a second, as if he’s trying to decide what won’t sound silly. “This is his last year to have fun with his friends. Can’t we see how this collapsed lung heals and then wait until the end of the year before we make any big decisions?”
Dr. Chortkoff looks at me. “David, what do you think?”
The room starts to darken. I’m getting extra oxygen, but it’s never enough. My throat tightens more. I have to concentrate on breathing to get any air at all.
I know about lung transplants from CF chat rooms. I know it’s a big deal to go on the list. You have to wait a long time—sometimes a year—to find a match. After the surgery, recovery takes months and requires an arsenal of medications, including steroids that make you moody and fat and that covered one of my online friends in back acne that I wish I’d never seen a picture of.
I also know that for the last four months I haven’t felt right. At the beginning of the summer, I got a job at a grocery store, thinking it might boost my energy to stay busy, but standing up for so long made me dizzy. I’d scan a bag of lettuce and see spots in front of my eyes. I told everyone I was quitting to concentrate on a college-level online course I was taking, which I never signed up for and no one ever asked about.
For a while, I don’t say anything. And then I take the deepest breath I can.
“I don’t know if I really have a choice. I think Dr. C is right—I have to do it,” I say.
My mother gasps again.
My dad shakes his head and says, “You realize what you’re saying, don’t you? T
his will affect your whole year. Your work on student council, your college applications, everything. If lungs turn up in December, that’s it, you’ve got to take them. Forget the winter formal. If it happens in May, never mind prom.”
My parents spent my childhood shuffling me to activities so I wouldn’t feel like a sick kid and no one would treat me like one. I understand why he’s saying this, but I also see from Dr. C’s expression: he sounds a little crazy. I’ve heard about people who get on the organ transplant list too late and die waiting for lungs. I know if you’re serious, you don’t schedule your transplant around parties you don’t want to miss. You get on the list, and you wait for the call.
“I don’t want to die,” I say softly. “That’s all.”
Dr. C explains the process. His main point seems to be that it isn’t easy getting on the transplant list. You have to be sick enough to really need the lungs but healthy enough to survive the surgery. I suspect he’s building up to something else and I’m right: he’s concerned about my weight loss. If I’m serious about a lung transplant, I can’t be underweight.
“I know you’ve resisted this in the past, but I’d like to recommend that we put in a G-tube. We can’t really move forward until you’ve regained the weight that you lost this year.”
He’s right; I have resisted this one. Vain as it sounds, the idea of pouring cans of Ensure into a tube attached to a hole in my stomach has always sounded horrifying to me, like one step away from being on a ventilator. Maybe I get this prejudice from my parents, who’ve always hated the idea of medical devices attached to my body and have said no to Port-a-Caths every time I was offered one. But what if Dr. C is right? If I’m losing weight no matter how much I eat, what other options do I have?
Before I can say anything, my dad holds up a hand. “Look, this is a lot to take in, Doctor. Can we have some time to talk all this over?”
“Of course,” Dr. C says, but after he leaves, we don’t say very much.
Just Breathe Page 2
