Desperately Lonely Swing Set Needs Loving Home 5 page

After a second, Kaitlyn said, “Remember Derek? He broke up with me last week because he’d decided there was something fundamentally incompatible about us deep down and that we’d only get hurt more if we played it out. He called it preemptive dumping. So maybe you have this premonition that there is something fundamentally incompatible and you’re preempting the preemption.”

“Hmm,” I said.

“I’m just thinking out loud here.” “Sorry about Derek.”

“Oh, I got over it, darling. It took me a sleeve of Girl Scout Thin Mints and forty minutes to get over that boy.” I laughed. “Well, thanks, Kaitlyn.”

“In the event you do hook up with him, I expect lascivious details.”

“But of course,” I said, and then Kaitlyn made a kissy sound into the phone and I said, “Bye,” and she hung up.

* * *

I realized while listening to Kaitlyn that I didn’t have a premonition of hurting him. I had a postmonition.

I pulled out my laptop and looked up Caroline Mathers. The physical similarities were striking: same steroidally round face, same nose, same approximate overall body shape. But her eyes were dark brown (mine are green) and her complexion was much darker—Italian or something.

Thousands of people—literally thousands—had left condolence messages for her. It was an endless scroll of people who missed her, so many that it took me an hour of clicking to get past the I’m sorry you’re dead wall posts to the I’m praying for you wall posts. She’d died a year ago of brain cancer. I was able to click through to some of her pictures. Augustus was in a bunch of the earlier ones: pointing with a thumbs-up to the jagged scar across her bald skull; arm in arm at Memorial Hospital’s playground, with their backs facing the camera; kissing while Caroline held the camera out, so you could only see their noses and closed eyes.

The most recent pictures were all of her before, when she was healthy, uploaded postmortem by friends: a beautiful girl, wide-hipped and curvy, with long, straight deadblack hair falling over her face. My healthy self looked very little like her healthy self. But our cancer selves might’ve been sisters. No wonder he’d stared at me the first time he saw me.

I kept clicking back to this one wall post, written two months ago, nine months after she died, by one of her friends. We all miss you so much. It just never ends. It feels like we were all wounded in your battle, Caroline. I miss you. I love you.

After a while, Mom and Dad announced it was time for dinner. I shut down the computer and got up, but I couldn’t get the wall post out of my mind, and for some reason it made me nervous and unhungry.

I kept thinking about my shoulder, which hurt, and also I still had the headache, but maybe only because I’d been thinking about a girl who’d died of brain cancer. I kept telling myself to compartmentalize, to be here now at the circular table (arguably too large in diameter for three people and definitely too large for two) with this soggy broccoli and a black-bean burger that all the ketchup in the world could not adequately moisten. I told myself that imagining a met in my brain or my shoulder would not affect the invisible reality going on inside of me, and that therefore all such thoughts were wasted moments in a life composed of a definitionally finite set of such moments. I even tried to tell myself to live my best life today.

For the longest time I couldn’t figure out why something a stranger had written on the Internet to a different (and deceased) stranger was bothering

me so much and making me worry that there was something inside my brain—which really did hurt, although I knew from years of experience that pain is a blunt and nonspecific diagnostic instrument.

Because there had not been an earthquake in Papua New Guinea that day, my parents were all hyperfocused on me, and so I could not hide this flash flood of anxiety.

“Is everything all right?” asked Mom as I ate.

“Uh-huh,” I said. I took a bite of burger. Swallowed. Tried to say something that a normal person whose brain was not drowning in panic would say. “Is there broccoli in the burgers?”

“A little,” Dad said. “Pretty exciting that you might go to Amsterdam.”

“Yeah,” I said. I tried not to think about the word wounded, which of course is a way of thinking about it. “Hazel,” Mom said. “Where are you right now?”

“Just thinking, I guess,” I said. “Twitterpated,” my dad said, smiling.

“I am not a bunny, and I am not in love with Gus Waters or anyone,” I answered, way too defensively. Wounded. Like Caroline Mathers had been a bomb and when she blew up everyone around her was left with embedded shrapnel.

Dad asked me if I was working on anything for school. “I’ve got some very advanced Algebra homework,” I told him. “So advanced that I couldn’t possibly explain it to a layperson.”

“And how’s your friend Isaac?” “Blind,” I said.

“You’re being very teenagery today,” Mom said. She seemed annoyed about it. “Isn’t this what you wanted, Mom? For me to be teenagery?”

“Well, not necessarily this kinda teenagery, but of course your father and I are excited to see you become a young woman, making friends, going on dates.”

“I’m not going on dates,” I said. “I don’t want to go on dates with anyone. It’s a terrible idea and a huge waste of time and—” “Honey,” my mom said. “What’s wrong?”

“I’m like. Like. I’m like a grenade, Mom. I’m a grenade and at some point I’m going to blow up and I would like to minimize the casualties, okay?” My dad tilted his head a little to the side, like a scolded puppy.

“I’m a grenade,” I said again. “I just want to stay away from people and read books and think and be with you guys because there’s nothing I can do about hurting you; you’re too invested, so just please let me do that, okay? I’m not depressed. I don’t need to get out more. And I can’t be a regular teenager, because I’m a grenade.”

“Hazel,” Dad said, and then choked up. He cried a lot, my dad.

“I’m going to go to my room and read for a while, okay? I’m fine. I really am fine; I just want to go read for a while.”

I started out trying to read this novel I’d been assigned, but we lived in a tragically thin-walled home, so I could hear much of the whispered conversation that ensued. My dad saying, “It kills me,” and my mom saying, “That’s exactly what she doesn’t need to hear,” and my dad saying, “I’m sorry but—” and my mom saying, “Are you not grateful?” And him saying, “God, of course I’m grateful.” I kept trying to get into this story but I couldn’t stop hearing them.

So I turned on my computer to listen to some music, and with Augustus’s favorite band, The Hectic Glow, as my sound track, I went back to Caroline Mathers’s tribute pages, reading about how heroic her fight was, and how much she was missed, and how she was in a better place, and how she would live forever in their memories, and how everyone who knew her—everyone—was laid low by her leaving.

Maybe I was supposed to hate Caroline Mathers or something because she’d been with Augustus, but I didn’t. I couldn’t see her very clearly amid all the tributes, but there didn’t seem to be much to hate—she seemed to be mostly a professional sick person, like me, which made me worry that when I died they’d have nothing to say about me except that I fought heroically, as if the only thing I’d ever done was Have Cancer.

Anyway, eventually I started reading Caroline Mathers’s little notes, which were mostly actually written by her parents, because I guess her brain cancer was of the variety that makes you not you before it makes you not alive.

So it was all like, Caroline continues to have behavioral problems. She’s struggling a lot with anger and frustration over not being able to speak (we are frustrated about these things, too, of course, but we have more socially acceptable ways of dealing with our anger). Gus has taken to calling Caroline HULK SMASH, which resonates with the doctors. There’s nothing easy about this for any of us, but you take your humor where you can get it. Hoping to go home on Thursday. We’ll let you know . . .

She didn’t go home on Thursday, needless to say.

So of course I tensed up when he touched me. To be with him was to hurt him—inevitably. And that’s what I’d felt as he reached for me: I’d felt as though I

were committing an act of violence against him, because I was.

I decided to text him. I wanted to avoid a whole conversation about it.

Hi, so okay, I don’t know if you’ll understand this but I can’t kiss you or anything. Not that you’d necessarily want to, but I can’t. When I try to look at you like that, all I see is what I’m going to put you through. Maybe that doesn’t make sense to you. Anyway, sorry.

He responded a few minutes later.

Okay.

I wrote back.

Okay.

He responded:

Oh, my God, stop flirting with me! I just said:

Okay.

My phone buzzed moments later.

I was kidding, Hazel Grace. I understand. (But we both know that okay is a very flirty word. Okay is BURSTING with sensuality.) I was very tempted to respond Okay again, but I pictured him at my funeral, and that helped me text properly.

Sorry.

* * *

I tried to go to sleep with my headphones still on, but then after a while my mom and dad came in, and my mom grabbed Bluie from the shelf and hugged him to her stomach, and my dad sat down in my desk chair, and without crying he said, “You are not a grenade, not to us. Thinking about you dying makes us sad, Hazel, but you are not a grenade. You are amazing. You can’t know, sweetie, because you’ve never had a baby become a brilliant young reader with a side interest in horrible television shows, but the joy you bring us is so much greater than the sadness we feel about your illness.”

“Okay,” I said.

“Really,” my dad said. “I wouldn’t bullshit you about this. If you were more trouble than you’re worth, we’d just toss you out on the streets.” “We’re not sentimental people,” Mom added, deadpan. “We’d leave you at an orphanage with a note pinned to your pajamas.”

I laughed.

“You don’t have to go to Support Group,” Mom added. “You don’t have to do anything. Except go to school.” She handed me the bear. “I think Bluie can sleep on the shelf tonight,” I said. “Let me remind you that I am more than thirty-three half years old.”

“Keep him tonight,” she said. “Mom,” I said.

“He’s lonely,” she said.

“Oh, my God, Mom,” I said. But I took stupid Bluie and kind of cuddled with him as I fell asleep.

I still had one arm draped over Bluie, in fact, when I awoke just after four in the morning with an apocalyptic pain fingering out from the unreachable center of my head.

CHAPTER SEVEN

Iscreamed to wake up my parents, and they burst into the room, but there was nothing they could do to dim the supernovae exploding inside my brain, an endless chain of intracranial firecrackers that made me think that I was once and for all going, and I told myself—as I’ve told myself before—that the body shuts down when the pain gets too bad, that consciousness is temporary, that this will pass. But just like always, I didn’t slip away. I was left on the shore with the waves washing over me, unable to drown.

Dad drove, talking on the phone with the hospital, while I lay in the back with my head in Mom’s lap. There was nothing to do: Screaming made it worse. All stimuli made it worse, actually.

The only solution was to try to unmake the world, to make it black and silent and uninhabited again, to return to the moment before the Big Bang, in the beginning when there was the Word, and to live in that vacuous uncreated space alone with the Word.

People talk about the courage of cancer patients, and I do not deny that courage. I had been poked and stabbed and poisoned for years, and still I

trod on. But make no mistake: In that moment, I would have been very, very happy to die.

I woke up in the ICU. I could tell I was in the ICU because I didn’t have my own room, and because there was so much beeping, and because I was alone: They don’t let your family stay with you 24/7 in the ICU at Children’s because it’s an infection risk. There was wailing down the hall. Somebody’s kid had died. I was alone. I hit the red call button.

A nurse came in seconds later. “Hi,” I said. “Hello, Hazel. I’m Alison, your nurse,” she said. “Hi, Alison My Nurse,” I said.

Whereupon I started to feel pretty tired again. But I woke up a bit when my parents came in, crying and kissing my face repeatedly, and I reached up for them and tried to squeeze, but my everything hurt when I squeezed, and Mom and Dad told me that I did not have a brain tumor, but that my headache was caused by poor oxygenation, which was caused by my lungs swimming in fluid, a liter and a half (!!!!) of which had been successfully drained from my chest, which was why I might feel a slight discomfort in my side, where there was, hey look at that, a tube that went from my chest into a plastic bladder half full of liquid that for all the world resembled my dad’s favorite amber ale. Mom told me I was going to go home, that I really was, that I would just have

to get this drained every now and again and get back on the BiPAP, this nighttime machine that forces air in and out of my crap lungs. But I’d had a total body PET scan on the first night in the hospital, they told me, and the news was good: no tumor growth. No new tumors. My shoulder pain had been lack- of-oxygen pain. Heart-working-too-hard pain.

“Dr. Maria said this morning that she remains optimistic,” Dad said. I liked Dr. Maria, and she didn’t bullshit you, so that felt good to hear. “This is just a thing, Hazel,” my mom said. “It’s a thing we can live with.”

I nodded, and then Alison My Nurse kind of politely made them leave. She asked me if I wanted some ice chips, and I nodded, and then she sat at the bed with me and spooned them into my mouth.

“So you’ve been gone a couple days,” Alison said. “Hmm, what’d you miss . . . A celebrity did drugs. Politicians disagreed. A different celebrity wore a bikini that revealed a bodily imperfection. A team won a sporting event, but another team lost.” I smiled. “You can’t go disappearing on everybody like this, Hazel. You miss too much.”

“More?” I asked, nodding toward the white Styrofoam cup in her hand.

“I shouldn’t,” she said, “but I’m a rebel.” She gave me another plastic spoonful of crushed ice. I mumbled a thank-you. Praise God for good nurses. “Getting tired?” she asked. I nodded. “Sleep for a while,” she said. “I’ll try to run interference and give you a couple hours before somebody comes in to check vitals and the like.” I said Thanks again. You say thanks a lot in a hospital. I tried to settle into the bed. “You’re not gonna ask about your boyfriend?” she asked.

“Don’t have one,” I told her.

“Well, there’s a kid who has hardly left the waiting room since you got here,” she said. “He hasn’t seen me like this, has he?”

“No. Family only.”

I nodded and sank into an aqueous sleep.

It would take me six days to get home, six undays of staring at acoustic ceiling tile and watching television and sleeping and pain and wishing for time to pass. I did not see Augustus or anyone other than my parents. My hair looked like a bird’s nest; my shuffling gait like a dementia patient’s. I felt a little better each day, though: Each sleep ended to reveal a person who seemed a bit more like me. Sleep fights cancer, Regular Dr. Jim said for the thousandth time as he hovered over me one morning surrounded by a coterie of medical students.

“Then I am a cancer-fighting machine,” I told him.

“That you are, Hazel. Keep resting, and hopefully we’ll get you home soon.”

On Tuesday, they told me I’d go home on Wednesday. On Wednesday, two minimally supervised medical students removed my chest tube, which felt like getting stabbed in reverse and generally didn’t go very well, so they decided I’d have to stay until Thursday. I was beginning to think that I was the subject of some existentialist experiment in permanently delayed gratification when Dr. Maria showed up on Friday morning, sniffed around me for a minute, and told me I was good to go.

So Mom opened her oversize purse to reveal that she’d had my Go Home Clothes with her all along. A nurse came in and took out my IV. I felt untethered even though I still had the oxygen tank to carry around with me. I went into the bathroom, took my first shower in a week, got dressed, and when I got out, I was so tired I had to lie down and get my breath. Mom asked, “Do you want to see Augustus?”

“I guess,” I said after a minute. I stood up and shuffled over to one of the molded plastic chairs against the wall, tucking my tank beneath the chair. It wore me out.

Dad came back with Augustus a few minutes later. His hair was messy, sweeping down over his forehead. He lit up with a real Augustus Waters Goofy Smile when he saw me, and I couldn’t help but smile back. He sat down in the blue faux-leather recliner next to my chair. He leaned in toward me, seemingly incapable of stifling the smile.

Mom and Dad left us alone, which felt awkward. I worked hard to meet his eyes, even though they were the kind of pretty that’s hard to look at. “I

missed you,” Augustus said.

My voice was smaller than I wanted it to be. “Thanks for not trying to see me when I looked like hell.”

“To be fair, you still look pretty bad.”

I laughed. “I missed you, too. I just don’t want you to see . . . all this. I just want, like . . . It doesn’t matter. You don’t always get what you want.” “Is that so?” he asked. “I’d always thought the world was a wish-granting factory.”

“Turns out that is not the case,” I said. He was so beautiful. He reached for my hand but I shook my head. “No,” I said quietly. “If we’re gonna hang out, it has to be, like, not that.”

“Okay,” he said. “Well, I have good news and bad news on the wish-granting front.” “Okay?” I said.

“The bad news is that we obviously can’t go to Amsterdam until you’re better. The Genies will, however, work their famous magic when you’re well enough.”

“That’s the good news?”

“No, the good news is that while you were sleeping, Peter Van Houten shared a bit more of his brilliant brain with us.”

He reached for my hand again, but this time to slip into it a heavily folded sheet of stationery on the letterhead of Peter Van Houten, Novelist

Emeritus.

I didn’t read it until I got home, situated in my own huge and empty bed with no chance of medical interruption. It took me forever to decode Van Houten’s sloped, scratchy script.

Dear Mr. Waters,

I am in receipt of your electronic mail dated the 14th of April and duly impressed by the Shakespearean complexity of your tragedy. Everyone in this tale has a rock-solid hamartia: hers, that she is so sick; yours, that you are so well. Were she better or you sicker, then the stars would not be so terribly crossed, but it is the nature of stars to cross, and never was Shakespeare more wrong than when he had Cassius note, “The fault, dear Brutus, is not in our stars / But in ourselves.” Easy enough to say when you’re a Roman nobleman (or Shakespeare!), but there is no shortage of fault to be found amid our stars.

While we’re on the topic of old Will’s insufficiencies, your writing about young Hazel reminds me of the Bard’s Fifty-fifth sonnet, which of course begins, “Not marble, nor the gilded monuments / Of princes, shall outlive this powerful rhyme; / But you shall shine more bright in these contents /

Than unswept stone, besmear’d with sluttish time.” (Off topic, but: What a slut time is. She screws everybody.) It’s a fine poem but a deceitful one: We do indeed remember Shakespeare’s powerful rhyme, but what do we remember about the person it commemorates? Nothing. We’re pretty sure he was male; everything else is guesswork. Shakespeare told us precious little of the man whom he entombed in his linguistic sarcophagus. (Witness also that when we talk about literature, we do so in the present tense. When we speak of the dead, we are not so kind.) You do not immortalize the

lost by writing about them. Language buries, but does not resurrect. (Full disclosure: I am not the first to make this observation. cf, the MacLeish poem “Not Marble, Nor the Gilded Monuments,” which contains the heroic line “I shall say you will die and none will remember you.”)

I digress, but here’s the rub: The dead are visible only in the terrible lidless eye of memory. The living, thank heaven, retain the ability to surprise and to disappoint. Your Hazel is alive, Waters, and you mustn’t impose your will upon another’s decision, particularly a decision arrived at

thoughtfully. She wishes to spare you pain, and you should let her. You may not find young Hazel’s logic persuasive, but I have trod through this vale of tears longer than you, and from where I’m sitting, she’s not the lunatic.

Yours truly,

Peter Van Houten

It was really written by him. I licked my finger and dabbed the paper and the ink bled a little, so I knew it was really real. “Mom,” I said. I did not say it loudly, but I didn’t have to. She was always waiting. She peeked her head around the door. “You okay, sweetie?”

“Can we call Dr. Maria and ask if international travel would kill me?”

CHAPTER EIGHT

We had a big Cancer Team Meeting a couple days later. Every so often, a bunch of doctors and social workers and physical therapists and whoever else got together around a big table in a conference room and discussed my situation. (Not the Augustus Waters situation or the Amsterdam situation. The cancer situation.)

Dr. Maria led the meeting. She hugged me when I got there. She was a hugger.

I felt a little better, I guess. Sleeping with the BiPAP all night made my lungs feel almost normal, although, then again, I did not really remember lung normality.

Everyone got there and made a big show of turning off their pagers and everything so it would be all about me, and then Dr. Maria said, “So the great news is that Phalanxifor continues to control your tumor growth, but obviously we’re still seeing serious problems with fluid accumulation. So the question is, how should we proceed?”

And then she just looked at me, like she was waiting for an answer. “Um,” I said, “I feel like I am not the most qualified person in the room to answer that question?”

She smiled. “Right, I was waiting for Dr. Simons. Dr. Simons?” He was another cancer doctor of some kind.

“Well, we know from other patients that most tumors eventually evolve a way to grow in spite of Phalanxifor, but if that were the case, we’d see tumor growth on the scans, which we don’t see. So it’s not that yet.”

Yet, I thought.

Dr. Simons tapped at the table with his forefinger. “The thought around here is that it’s possible the Phalanxifor is worsening the edema, but we’d face far more serious problems if we discontinued its use.”

Dr. Maria added, “We don’t really understand the long-term effects of Phalanxifor. Very few people have been on it as long as you have.” “So we’re gonna do nothing?”

“We’re going to stay the course,” Dr. Maria said, “but we’ll need to do more to keep that edema from building up.” I felt kind of sick for some reason, like I was going to throw up. I hated Cancer Team Meetings in general, but I hated this one in particular. “Your cancer is not going away, Hazel. But we’ve seen people live with your level of tumor penetration for a long time.” (I did not ask what constituted a long time. I’d made that mistake before.) “I know that coming out of the ICU, it doesn’t feel this way, but this fluid is, at least for the time being, manageable.”

“Can’t I just get like a lung transplant or something?” I asked.

Dr. Maria’s lips shrank into her mouth. “You would not be considered a strong candidate for a transplant, unfortunately,” she said. I understood: No use wasting good lungs on a hopeless case. I nodded, trying not to look like that comment hurt me. My dad started crying a little. I didn’t look over at him, but no one said anything for a long time, so his hiccuping cry was the only sound in the room.

I hated hurting him. Most of the time, I could forget about it, but the inexorable truth is this: They might be glad to have me around, but I was the alpha and the omega of my parents’ suffering.

Just before the Miracle, when I was in the ICU and it looked like I was going to die and Mom was telling me it was okay to let go, and I was trying to let go but my lungs kept searching for air, Mom sobbed something into Dad’s chest that I wish I hadn’t heard, and that I hope she never finds out that I did hear. She said, “I won’t be a mom anymore.” It gutted me pretty badly.

I couldn’t stop thinking about that during the whole Cancer Team Meeting. I couldn’t get it out of my head, how she sounded when she said that, like she would never be okay again, which probably she wouldn’t.

Anyway, eventually we decided to keep things the same only with more frequent fluid drainings. At the end, I asked if I could travel to Amsterdam, and Dr. Simons actually and literally laughed, but then Dr. Maria said, “Why not?” And Simons said, dubiously, “Why not?” And Dr. Maria said, “Yeah, I don’t see why not. They’ve got oxygen on the planes, after all.” Dr. Simons said, “Are they just going to gate-check a BiPAP?” And Maria said, “Yeah, or have one waiting for her.”

“Placing a patient—one of the most promising Phalanxifor survivors, no less—an eight-hour flight from the only physicians intimately familiar with her case? That’s a recipe for disaster.”

Dr. Maria shrugged. “It would increase some risks,” she acknowledged, but then turned to me and said, “But it’s your life.”

Except not really. On the car ride home, my parents agreed: I would not be going to Amsterdam unless and until there was medical agreement that it would be safe.

* * *

Augustus called that night after dinner. I was already in bed—after dinner had become my bedtime for the moment—propped up with a gajillion pillows and also Bluie, with my computer on my lap.

I picked up, saying, “Bad news,” and he said, “Shit, what?”

“I can’t go to Amsterdam. One of my doctors thinks it’s a bad idea.”

He was quiet for a second. “God,” he said. “I should’ve just paid for it myself. Should’ve just taken you straight from the Funky Bones to Amsterdam.” “But then I would’ve had a probably fatal episode of deoxygenation in Amsterdam, and my body would have been shipped home in the cargo hold of

an airplane,” I said.

“Well, yeah,” he said. “But before that, my grand romantic gesture would have totally gotten me laid.” I laughed pretty hard, hard enough that I felt where the chest tube had been.

“You laugh because it’s true,” he said. I laughed again.

“It’s true, isn’t it!”

“Probably not,” I said, and then after a moment added, “although you never know.” He moaned in misery. “I’m gonna die a virgin,” he said.

“You’re a virgin?” I asked, surprised.

“Hazel Grace,” he said, “do you have a pen and a piece of paper?” I said I did. “Okay, please draw a circle.” I did. “Now draw a smaller circle within

that circle.” I did. “The larger circle is virgins. The smaller circle is seventeen-year-old guys with one leg.”

I laughed again, and told him that having most of your social engagements occur at a children’s hospital also did not encourage promiscuity, and then we talked about Peter Van Houten’s amazingly brilliant comment about the sluttiness of time, and even though I was in bed and he was in his basement, it really felt like we were back in that uncreated third space, which was a place I really liked visiting with him.

Then I got off the phone and my mom and dad came into my room, and even though it was really not big enough for all three of us, they lay on either side of the bed with me and we all watched ANTM on the little TV in my room. This girl I didn’t like, Selena, got kicked off, which made me really happy for some reason. Then Mom hooked me up to the BiPAP and tucked me in, and Dad kissed me on the forehead, the kiss all stubble, and then I closed my eyes.

The BiPAP essentially took control of my breathing away from me, which was intensely annoying, but the great thing about it was that it made all this noise, rumbling with each inhalation and whirring as I exhaled. I kept thinking that it sounded like a dragon breathing in time with me, like I had this pet dragon who was cuddled up next to me and cared enough about me to time his breaths to mine. I was thinking about that as I sank into sleep.

Date: 2015-12-17; view: 570