When I was little, I thought it would be like that all the time, that Joe and Nick would come with me wherever I went. Just because. Without my having to ask them. It kills me now that I’ll be gone and they’ll be doing stuff we should be doing together. Or at least they’ll be talking about it together after the fact. You know from the way Holden doesn’t talk about his brother Allie that he misses not having him to talk with. It should be the three of us Landon boys sharing inside jokes and ribbing Joe about his lectures on how the real world is and getting pumped with Nick, that pure high of his about being alive.
When Grandma called us gypsies, I could see myself saying it to a string of my own kids, my team, once Joe and Nick were off doing their own thing. It would be a way to make the everyday junk seem like an adventure. I can hear Mack Petriano dissing me: “Mary Poppins, welcome home.” It isn’t that, honestly. I’m not that much of a wuss. Especially lately, I get it that no one can really understand what another person feels. But it’s the idea that chores or school or life don’t have to drag you down if you stick together. That’s what clicks with me. Or did. Too late to lose sleep over it now.
Even though Dad stole Grandma’s saying and twists it around in his lectures about communication as the solution to world peace by emphasizing the listen and not the gypsies, I don’t argue with him. The truth is the middle kid never gets much airtime. When Joe’s here, he controls every conversation. I guess you’d expect that. As the oldest it’s easy to get sucked up into Mom and Dad’s trial and error, Parenting 101. Joe’s the first at everything and he has to break all the barriers for Nick and me. So he probably thinks he’s earned the right to talk first.
Lucky Nick cruises right through things. Just because someone tells him he can’t do something, he doesn’t let that faze him. He waits until they aren’t paying attention and then does exactly what he wants to do. He and Phoebe Caulfield.
So, in a way, The Disease levels the playing field. Now they have to listen to me.
Holden’s working on the same thing. Trying to get someone to take him seriously. For totally different reasons, of course. And I’m not sure he knows that’s why he acts the way he does or even if he isn’t wondering what’s the point of it all. But he and I think a lot alike. We’re practically the same age. And even though, like me, he doesn’t have a clue what he’s going to do next, there’s one huge difference. He has his whole life ahead of him to figure it out.
It’s hard not to hate him for that. And Nick and Joe. They get to live. Maybe go around the world, sleep with a few girls before they find the right one, invent a new kind of car, run a business, or whatever. They have time to fix mistakes they made when they didn’t know better.
I’m stuck with whatever I’ve done so far and maybe ten or twelve months more. It’s like my name, the highest limbo pole ever. Sometimes I think I shouldn’t even waste time sleeping. There’s not enough time to do all the things I planned on doing before I got sick.
Twenty-five, thirty years ago when my parents were teenagers, buying plastic 45s and hoping someone brought weed to the sleepover, only little kids had leukemia. You’ve seen those bald heads on posters. Everyone has. Cute, smiley kids with no hair. But never the same kid from year to year. There’s a reason for that.
By the time leukemia found me, the hospitals were full of cancer patients, all ages. A teenager with leukemia was nothing special. AML, or acute myeloid leukemia, my mother forever corrects me as if the official name makes it easier to accept I’m going to be dead in a year.
Hard to figure when formality’s not her strong suit, but she insists on that precise medical term with other people, too. In some weird way it’s a kind of protection. No son of hers could be laid low by something as mundane as cancer.
CHAPTER THREE
I’m writing this the summer after the new millennium has come and gone. What a fizzle. Y2K was the biggest flop ever. And no one, me especially, has any great hope for the rest of the century. I mean, the Croatians are killing the Serbians, the Russians nuked everyone at Chernobyl but still refuse to admit they were at fault, and Saddam Hussein continues to shoot people and bury them in roadside ditches because he doesn’t like the way they tie their sarongs or whatever you call that headgear people in desert countries wear to avoid sun poisoning.
The only good thing about Y2K was that everyone had to stop and think about the future. Their ideal future. The ones who thought the world would end, the ones who thought they’d lose all their money because the banks would freeze and the stock market would fail, the ones who thought the terrorists would take over: they were all forced to look at their lives from a different perspective. We must have written about it in every class last fall. So whenever anyone asks how I feel about The Disease, I say, “It’s like Y2K, only personal.”
To tell you the truth, my life is simple compared with Holden’s. Compared with the whole effing rest of the world’s. Which a grown-up would tell you is good, but I know better. And so does HC. Grown-ups hate complications, even though that’s what makes any of it interesting.
So, leukemia, here’s the real story. You feel lousy most of the time. You turn into a total dud. Least that’s what Nick claims because I won’t run soccer drills with him like I used to last summer. No use explaining to him it’s more to do with having grown out of playing games like that than being sick. Plus I sleep more.
Sleeping helps because you forget. Trouble is, you wake up with no more energy than when you got in bed. And you don’t forget for long. You get real skinny and weak. Mack says I’m starting to look like Mick Jagger. You have to drop out of every public activity because you’re too tired. Or other people’s parents act like you have cooties. Or you’re just sick of answering their questions. And when they pat your shoulder, you’re sick of trying to smile instead of sinking your teeth into their hands.
The doctors sit around and shake their heads like they don’t really have a clue what works and what doesn’t. Then they say what they say to every other cancer patient: he needs chemo, she needs radiation. As if everyone’s supposed to know exactly what that means. And hop right to it, like it’s cotton candy or a free rollercoaster ride.
It feels like you’re living in some sci-fi movie, Star Wars AWOL at the Mayo Clinic. Continuous four-syllable words roll off their tongues, words you’ve never heard before. All that flash and burn technology, the next thing you know you start feeling hopeful. Someday, someday soon, they’ll be able to slide you through a metal tunnel and regenerate your old body with a new one, pure and whole, like a fucking starfish.
That’s the myth they want you to believe. And it’s tempting.
Let me tell you how it really works. First they tell you you’re sick. Duh. You’re supremely aware of that fact from the way you feel. Then they run you through every machine in the hospital. Sometimes more than one hospital. They take samples from all kinds of weird places with superlong needles and photograph every single part of your body, and they share the pictures with every doctor and nurse in a hundred-mile radius. Privacy, hah. Privacy means nothing to those know-it-alls. After that? They send you home and you still feel lousy.
Your parents stay up nights arguing and throwing things. It goes on for weeks and weeks. They get angrier. You get sicker. That makes them even angrier. Then, when you finally wake up and realize it’s not some movie—it’s for real—you get angry. But you still have to do your homework and pick up your clothes.
And if you have parents like mine, they don’t trust the doctors because those same doctors are part of the corporate machine tied to the big bad pharmaceutical companies. Who are all in league with the government with a capital G. So el parentos refuse the advice and talk to lesser-known gurus, who live in the Andes Mountains or the Yucatán, about natural remedies and you end up eating boysenberries pureed with rare duck eggs.
Leukemia sucks.
But I’m getting way ahead of myself. And Holden will be ticked if I leave out the parts about him.
And the funny parts. He’s the one who made me see that books without funny parts aren’t real. Because real life has funny parts, even when people are being lousy to each other or bad things are happening. If my English 9 teacher were critiquing what I’ve written so far, I can just hear what Stratford-Mains would say. I know, I know. Stratford-Mains sounds like a British village in an old black-and-white movie, but we called her Stepford-Hanes because her makeup was so perfect and she wore skirts with stockings every day. She was the only teacher in the whole middle school who didn’t wear pants. Great legs, like she could be the model in an ad for Hanes pantyhose.
If she were editing this, she’d say it needed more showing, less telling. I’ll try harder, but I have to get out the basics. It’s easier just to tell some stuff up front. And eventually I’ll get to the whole truth, like that I-am-not-a-criminal Nixon, a very odd man we studied ad nauseam in American History. Twisted.
When Dad yells for me, I unhook from the Discman. Even with the back-to-the-earth mindset my parents have drilled into me, I’m allowed to have semimodern technology for music. It’s like an exception to Mom’s phobia about microwave radiation and the new generation of brain-dead video-game junkies. It’s more the music she accepts than the plug-in entertainment. Through the open slats of the window’s plastic louvers I can see stripes of torso in Dad’s Jefferson Airplane T-shirt. They had their music. We have ours. A whole new meaning to fair trade.
He’s outside on the deck scanning the horizon as if we were halfway to the Panama Canal instead of sandbar-sitting in a creek off the Rappahannock River. We’re actually living down the street from our last rental house. Only not, because we’re on a floating houseboat.
I’m on my knees, working at locating my cargo shorts under the bunk. Today I feel pretty good, only a little dizzy. If I’m not careful, sitting up too fast brings up breakfast. The boat rocking doesn’t help. Unfortunately it’s not the kind of thing I can tell my parents when they’re already so over the edge about The Disease.
The Rappahannock is a crazy river, not as wide here as it is downstream past the power lines. Usually we tie up at the dock of friends of my parents who lost their boat in the last hurricane. By mooring in Hoskins Creek we’re protected from the north wind, where most of the bad weather comes from. Just out of sight of the Route 360 bridge. The bridge is also the transition point. It straddles the place in the river where the salt water runs out and the freshwater starts.
In the middle here the river current is deceptively sluggish. You can’t see it until you’re in it. If you don’t watch yourself, you can end up in Urbanna—heck, in England—but at least the salt water would keep you up. Hunger’s what would kill you.
Here’s what bugs me about some of the kids I go to school with. And about some grown-ups, too. Amazing to me that they live here their whole lives and are never curious enough to wonder where the water goes or to look at a map and see that it feeds into the Chesapeake Bay and then the Atlantic Ocean. Personally I think that connection to the rest of the world is pretty important. I always figured I’d be like Admiral Byrd and find a new place to explore. That would be my contribution.
Mack and I used to plan where we’d start, exotic places like Algeria and Tahiti. We made lists of what we’d take. We even practiced smoke signals and starting fires with stones. I was a little kid then and didn’t know they’d already found all the places in the world. What dorks we were. But it’s turned out to be okay. It used to depress me, but now…it’s no big deal, because I won’t have time.
Below the bridge, across from the mouth of the creek, the northern shoreline is an almost uninterrupted green. Washed-out, but green. No houses because it’s a protected wildlife sanctuary. By federal law. The green makes a clear demarcation from the brown river. If you squint in the summertime while you’re lying on the beach or on a float, you can pretend the jungles are inching closer. Like in Apocalypse Now. It’s a game Mack invented years ago, even better since we moved to the houseboat. He loves those kinds of psychological twists. That boy is intense.
Mack is my best friend since Joe left for college. Before then we were just buddies who spent time together. You can’t always do stuff with your big brother, even if he is your best friend. And little brothers are a total pain. Mack has one too: Roger (alias the Dweeb).
When Mack and I started elementary school, my family was living in a rented house on Jeanette Drive. It was tucked into a clearing on the same road as the defunct Hoskins Creek Marina. Defunct. Isn’t that a great word? It sounds exactly like what it is. Someday Nick can say that about me in his political speeches when he’s saving the world. My D-funct brother, may he rest in peace. Dead family members earn you a lot of sympathy if you’re in the public eye. Look at the Kennedys.
The Petrianos live on a dead-end dirt road behind Dollar Inn Motel on Route 17, same house they’ve always been in. Mack’s father runs the school-bus garage for the county. Mr. Petriano is one of the most boring guys I’ve ever met, hands down. I mean, he’s okay as someone else’s father, but he hardly ever talks, and when he does, it’s just reminders of things Mrs. Petriano has already said. Pick up your room. Church is at ten today. Your turn to clear the table. No wonder Mack is such a wild man. He has to train hard not to turn into his dad.
Mack is funny and a cutup and has a hundred ideas a minute. Every once in a while he gets a little off-kilter, like an HO scale train taking the curve too fast. He comes up with the oddest ideas. It’s like he doesn’t want to slow down to think them through. That’s one reason we’re a good team. Usually he’ll listen to me, and I am not a thrill seeker.
He used to walk to our old house all the time. Probably to get away from his dad’s rewind button. It would kill me if my father was like that and didn’t have any opinions of his own. Since we moved to the houseboat, Mack kayaks over from the public boat ramp in an old, beat-up two-man kayak his father found at the dump. They leave it in the reeds and no one bothers it. Typical Essex County.
That’s one okay thing about Mr. Petriano. He’s a junk fanatic. He finds the best stuff at the landfill. He’s like a bloodhound for it. I’ve walked with him and Mack by piles of debris and it’s the most amazing thing. You can pass a mound of metal and wood that’s all broken and bent, nothing worth looking at, much less carrying away. But Mr. Petriano stops and tilts his head kinda sideways. He shoves the pile one way or the other with his foot. Mack’s usually talking a mile a minute, so he doesn’t even twig that it’s happening. But once Mr. Petriano bends down and reaches into the pile, even Mack stops talking. He knows something incredible is going to come busting out at the end of Mr. Petriano’s arm. A BB gun, a perfectly good chain saw, a VCR that only needs a new plug—that’s the kind of stuff Mr. P finds.
My dad couldn’t find his own foot in a pile like that. His brain is always going, but its connection to the real world works more like a hose with kinks in it. You get spurts or dribbles most of the time, once in a while a geyser.
Every summer for my whole life it seems like Mack and I messed around the empty marina building and the junked boats on the creek. When we were little kids, he would make up stories and we’d act them out. It’s where we started playing jungle war, only not when my dad was around.
If Dad overhears any mention of the Vietcong or ’Nam, he starts right in with his standard lecture about the liars in Washington and the power-hungry military. Another reason my parents have never taken us to our nation’s capital: it’s a bastion of corruption.
In grade school my friends loved overnights at our house, cramped as it was. They didn’t know anyone else whose parents let them stay up all night. My mom and dad hardly ever said no. So between Mack and my parents, my childhood memories are awesome. Pirate games and campfires at midnight and sleeping under the stars on the dock of the D-funct marina. Not a bad life. Sorry if I sound like someone’s grandfather about the good old days. The only reason I’m telling you about back then is so you can see the difference now.
Somewhere between grade school and high school, life slowed down big-time. Pure mud. I didn’t notice it until this summer, when life feels like quicksand most of the time. But looking back, it started before The Disease and it’s escalating. My parents argue more, about a lot of little things, but mostly about money. The boat is falling apart. Mom’s not sleeping well. She’s too tired to do all the things she used to like to do, like hanging laundry outside and baking bread. She wants a clothes dryer, which you can’t run on a houseboat battery or with kerosene.
Dad’s confused because Mom has never been an appliance freak. When she brings up this stuff, he calls her a traitor. She yelps at the gross unfairness of that, the years she slung the laundry basket outside and hung up clothes, rain or shine. I know she wants to say it’s the germs and my being sick that makes her so paranoid, but she can’t because it would sound like she’s blaming me and I didn’t ask for the stupid leukemia.
All of that makes it impossible for them to focus on what I want, a car of my own, even though I won’t be old enough to drive until April. Dead by June. Even I can see it wouldn’t be a great investment.
Earlier this summer I interrupted one of their fights, before they told me what the doctors had already told them, that I had this sucky disease.
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