UNCORRECTED E-PROOF—NOT FOR SALE
HarperCollins Publishers
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Advance Reader’s e-proof
courtesy of HarperCollins Publishers
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UNCORRECTED E-PROOF—NOT FOR SALE
HarperCollins Publishers
..................................................................
UNCORRECTED E-PROOF—NOT FOR SALE
HarperCollins Publishers
..................................................................
DEDICATION
[DEDICATION TK]
CONTENTS
Cover
Disclaimer
Title
Dedication
Prologue
Chapter 1: {Aza}
Chapter 2: {Aza}
Chapter 3: {Aza}
Chapter 4: {Aza}
Chapter 5: {Aza}
Chapter 6: {Aza}
Chapter 7: {Aza}
Chapter 8: {Jason}
Chapter 9: {Aza}
Chapter 10: {Aza}
Chapter 11: {Aza}
Chapter 12: {Aza}
Chapter 13: {Jason}
Chapter 14: {Aza}
Chapter 15: {Aza}
Chapter 16: {Aza}
Chapter 17: {Jason}
Chapter 18: {Aza}
Chapter 19: {Aza}
Chapter 20: {Jason}
Chapter 21: {Jason}
Chapter 22: {Aza}
Chapter 23: {Aza}
Chapter 24: {Aza}
Chapter 25: {Aza}
Chapter 26: {Jason}
Chapter 27: {Aza}
Chapter 28: {Aza}
Chapter 29: {Jason}
Chapter 30: {Aza}
Acknowledgements
About the Author
Copyright
About the Publisher
UNCORRECTED E-PROOF—NOT FOR SALE
HarperCollins Publishers
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I breathe in. I breathe out. The sky’s full of clouds. A rope is looping down from above, out of the sky and down to earth. There is a woman’s face looking at me, and all around us, hundreds upon hundreds of birds. The flock flows like water, surging up and into the air, black and gold and red, and everything is safe and cold, bright with stars and moon.
I’m tiny in comparison, and I’m not on the ground.
I know everyone has dreams of flying, but this isn’t a dream of flying. It’s a dream of floating, and the ocean is not water but wind.
I call it a dream, but it feels realer than my life.
UNCORRECTED E-PROOF—NOT FOR SALE
HarperCollins Publishers
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My history is hospitals.
This is what I tell people when I’m in a mood to be combination funny and stressful, which is a lot of the time.
It’s easier to have a line ready than to be forced into a conversation with someone whose face is showing “fake nice,” “fake worry,” or “fake interest.” My preferred method is as follows: make a joke, make a half-apologetic/half-freaky face, and be out of the discussion in five seconds flat.
Aza: “Nothing really majorly wrong with me. Don’t worry. I just have a history of hospitals.”
Person in Question: “Er. Um. Oh. I’m so sorry to hear that. Or, wait, glad. You just said that nothing’s really wrong with you! Glad!”
Aza (freaky face intensifying): “It’s incredibly nice of you to ask.”
Subtext: It isn’t. Leave it.
People don’t usually ask anything after that. Most are polite. My parents, my family, not so much, but the randoms? The substitute teacher who wonders why I’m coughing and having to leave the room—then having to go to the nurse’s office—then having to have a nice 911 call to summon an ambulance to spirit me back to my white linoleum homeland?
That sort of person doesn’t typically want to remind me of things I no doubt already know. Which I very much do. Don’t be stupid. Also, don’t think I’m stupid.
This is not, like, Little Women. Beth and her nice, invalid Beth-ness have always made me puke. The way people imagined she wasn’t dying. The way she blatantly was. In that kind of story, the moment someone decides to wrap you in blankets and you accidentally smile weakly, you’re dead.
Hence, I try not to smile weakly, even if I feel weak, which I sometimes secretly or unsecretly do. I don’t want to make myself into a catastrophic blanket-y invalid.
Bang, bang, you’re dead. Close your eyes and go to bed.
Side note: invalid. Whoever invented that word, and made it the same word as not-valid? That person sucked.
So, right, the question of death comes up in my presence on a regular basis. Adults don’t want to talk about it. Seriously, it’s not as though I want to talk about it either. But other people my age do.
DEATH DEATH DEATH, everyone’s thinking, like we’re in our cars, driving slowly past accidents on the highway all day long. They’re grossly fascinated.
Some of us, the ones actually dying, are maybe less fascinated than others. Some of us, maybe, would rather not get stuck in rooms where people are regularly talking about celebrity death-y things, whichever kind you want, the OD, the car crash, the mystery fall-apart . . .
People my age enjoy crying and speculating dramatically over how people our age could die. Take it from one who knows. Take it from one whose role has been, for years, The Girl I Knew Really Well Who Tragically Died One Day.
Not that I’ve died yet. I am still totally here. Which is why all the artistic, goth morbidity is a bummer.
Adults want to talk about death way less than people my age do. Death is the Santa Claus of the adult world. Except Santa Claus in reverse. The guy who takes all the presents away. Big bag over the shoulder, climbing up the chimney carrying everything in a person’s life, and taking off, eight-reindeered, from the roof. Sleigh loaded down with memories and wineglasses and pots and pans and sweaters and grilled cheese sandwiches and Kleenexes and text messages and ugly houseplants and calico cat fur and half-used lipstick and laundry that never got done and letters you went to the trouble of handwriting but never sent and birth certificates and broken necklaces and disposable socks with scuffs on the bottom from hospital visits.
And notes you kept on the fridge.
And pictures of boys you had crushes on.
And a dress that got worn to a dance at which you danced by yourself, before you got too skinny and too breathless to dance.
Along with, probably, though this isn’t worthy of huge thinking, a soul or something.
Anyway, adults don’t believe in Santa Claus. They try hard not to believe in Santa Claus in Reverse either.
At school, the whole rare-disease-impending-doom situation makes me freakishly intriguing. In the real world, it makes me a problem. Worried look, bang, nervous face, bang: “Maybe you should talk to someone about your feelings, Aza,” along with a nasty side dish of what-about-God-what-about-therapy-what-about-antidepressants?
Sometimes also what-about-faith-healers-what-about-herbs-what-about-crystals-what-about-yoga? Have you tried yoga, Aza, I mean have you, because it helped this f
riend of a friend who was supposedly dying but didn’t, due to downward dog?
No. I haven’t tried yoga to cure my thing, because yoga isn’t going to cure my thing. My thing is a Mystery and not just a Mystery, but Bermuda—no sun, only Triangle.
Unknowable. Unsolvable.
I take handfuls of drugs every morning, even though no one is entirely sure what the thing that’s wrong with me actually is. I’m rare like that. (Rare, like what?)
Rare, like bloodwork and tests and things reaching down my throat. Rare like MRIs and X-rays and sonograms and swabs and never any clear diagnosis.
Rare, like my disease is standing onstage in a tuxedo belting out a torch song that has a chorus along the lines of “Baby, you’re the only one for me.” And then the disease just stands there, waiting for me to walk into its arms and give up resisting.
Rare, as in: so far, I’m the only person on earth who’s been diagnosed with this particular precision awesomeness.
Maybe I sound like I’m exaggerating. No. My disease is so rare it’s named Azaray Syndrome.
After me, Aza Ray Boyle.
Which is perverse. I don’t want a doppelgänger in disease form, some weird medical case immortality, which means medical students’ll be saying my name for the next hundred years. No one asked ME when the lab published a paper in Nature and gave this disease my name. I would’ve said no. I’d like to have named my disease myself: the Jackass, or maybe something ugly, such as Elmer or Clive.
None of the above topics, the death and dying topics, are things I actually feel inclined to talk about. I’m not depressed. I’m just fucked up. I have been since I can remember. There’s not a version of my life that isn’t fucked up.
Yes. I’m allowed to say that word if I feel like it, and I do. I feel like swearing about this. It’s me in this body, thank you, snarled and screwed up and not going to make it; let’s not go on about things we can’t revise. I’m an edited version of a real live girl, or at least, that’s what I say when I want to tell you something and I would rather not talk about it but have to get it out of the way so we can move on to better topics.
Yeah, I totally know I don’t look well. No, you don’t need to look concerned. I know you wish you could help. You can’t. I know you’re probably a nice person, but seriously? All I really want to talk to strangers about is anything other than this thing.
The facts of it, though? Basic, daily of Elmer /Clive/the Jackass/Azaray Syndrome? I have to live in rooms kept free of dust. This has been true almost since forever. When I was born, I was healthy and theoretically perfect. Almost exactly a year later, out of nowhere, my lungs stopped being unable to understand air.
My mom came into the room one morning and found me having a seizure. Because my mom is my mom, she had the presence of mind to give me mouth-to-mouth and breathe for me. She kept me alive until they could get me to the hospital. Where they also—barely—kept me going, by making a machine do the breathing. They gave me drugs and did things to make the oxygen density of the air less, rather than more. It got a little better.
I mean, a lot better, given that here I still am. Just not better enough. Early on, I slept for what felt like centuries inside a shell of clear plastic and tubing. My history is made of opening my eyes in rooms where I didn’t fall asleep, the petting of paramedics, the red and white spinning shriek of sirens. That’s a thing that just is, if you’re the lucky girl who lives with Clive.
I look weird and my inner workings are weird, and everyone’s always like, huh, never seen that shit before. Mutations all over my body, inside, outside, everywhere but my brain, which, as far as anyone can tell, is normal.
All the brain chemical-imbalance misery that some people have? I don’t. I don’t wake up riddled with apocalypse panic, and I don’t feel compelled to do anything in the category of biting my own fingers off, or drinking myself into a coma. In the scheme of things, having a brain that mostly obeys your instructions is not nothing.
Otherwise, I’m Aza-the-Exhibition. I’m the World’s Fair. (All I want, ALL I WANT, is for there to be the World’s Unfair Exposition, preferably in a city near where I live. Booths full of disappointments, huge exhibits of structures built to fail. No Oh-My-God-the-Future-Will-Be-Amazing Exhibits, but the reverse. No flying cars. Cars that squinch along like inchworms.)
I try not to get involved with my disease, but it’s persuasive. When it gets ahold of me, the gasping can put me on the floor, flopping and whistling, something hauled up from a lake bottom. Sometimes I wish I could go back to that bottom and start over somewhere else. As something else.
Secretly, as in only semi-secretly, as in this is a thing I say loudly sometimes—I think I wasn’t meant to be human. I don’t work right.
And now I’m almost sixteen. One week to go.
School Nurse: “You’re a miracle! You’re our miracle!”
Aza Ray Boyle: (retching noises)
Because I’m still alive I’m thinking about having a party. There’s that thing about sixteen. That big-deal factor. Everything changes and suddenly you’re right in the world, wearing a pink dress and kissing a cute boy or doing a dancey-prancy musical number.
I clarify, that’s what happens in movies. In this life? I don’t know what happens from here. Nothing I majorly want to think about.
Who would I invite? EVERYONE. Except the people I don’t like. I know enough people to categorize the group of people I know as everyone, but I like maybe five or six of them, total. I could invite doctors, in which case the group would radically grow. I said this to my parents a couple of days ago, and now they hover, considering my questionable attitude. Which they’ve been considering since forever.
But I ask you, wouldn’t it be worse if I were perfect? My imperfections make me less mournable.
Nobody enjoys birthdays. Everyone in the house is nervous. Even the plants look nervous. We have one that curls up. It isn’t allowed to share a room with me, but sometimes I visit it and touch its leaves and it cringes. It’s curled up now into a tight little ball of Leaves Me the Hell Alone.
Get it?
Leaves? (Oh, haha. Oh very haha.)
High school. First bell. Walking down the middle hall. Past a billion lockers. Late for class. No excuse, except for the one I always have.
I raise my fist to bump with Jason Kerwin, also late, who doesn’t acknowledge me with his face, just as I don’t acknowledge him with mine. Only fists. We’ve known each other since we were five. He’s my best friend.
Jason is an exception to all rules of parental worry re: Hanging With Humans Other Than Parents, because he knows every possible drill of emergency protocol.
He’s allowed to accompany me places my parents don’t want to go. Or do want to go, but do not want to spend hours at. Aquariums, natural history museum bug collections and taxidermy dioramas, rare bookstores where we have to wear masks and gloves if we want to touch, back rooms full of strange butterflies, bone and life-size surgical model collections discovered on the internet.
Et cetera.
Jason never talks about death, unless it’s in the context of morbid cool things we might want to hunt the internet for. Aza Ray and the Great Failure of Her Physical Everything? Jason leaves that nasty alone.
Second bell, still in the hall, and I raise one casual relevant finger at Jenny Green. Pink streak in her hair, elbows sharper than daggers, tight jeans costing roughly the equivalent of a not un-nice used car. Jenny has pissed me off lately by being. I mean, not by basic being. Mean being. We have a silent war. She doesn’t deserve words at this point, though she called me some a couple of days ago, in a frenzy of not-allowed. Calling the sick girl names? Please. We all know it’s not okay.
I kind of, semi, have to respect her for the transgression. It’s a little bit badass, to do the thing no one else has ever dared do. Lately, there’s been this contagious idea that I resemble a hungry, murdery girl ghost from a Japanese horror movie, so Jenny came to school in blue lipstick and whi
te powder. To mock me.
Jenny smiles and blows me a kiss full of poison. I catch it and blow it back through my today very indigo lips, thoroughly creeping her. I give her a little shudder gasp. If ghost girl is going to be my deal, I might as well use it to my advantage. She stares at me as though I’ve somehow played unfair, and takes off at a repulsed run for her class.
Insert meaningless pause at locker. Slow walk. Peer into classroom windows, through the wire mesh they put in there to discourage people like me from spying on people like them.
My little sister, Eli, senses me staring, and looks up from her already deep-in-lecture algebra. I rock out briefly in the hallway, free, fists up, at liberty like no one else is this time of morning. Sick-girl privilege. Eli rolls her eyes at me, and I walk on, coughing only a little bit, manageable.
Seven minutes late to English and it’s Mr. Grimm, eyebrow up. The Perpetually Tardy Mizz Aza Ray, his name for me, and yeah, his name is Grimm, really. Blind bat eyes, thick-frame glasses, skinny tie like a hipster, but that look’s not working for him.
Mr. Grimm’s muscle-bound, though he never rolls up his sleeves. He has the kind of arms that strain against fabric, which fact tells me he has no actual life, and just veers between being a teacher and drinking protein shakes.
He’d seem as though he belongs in the PE end of the building, except that when he opens his mouth he’s nerdtastic. I also think he has tattoos, which he’s tried to cover up in various ways. Pancake makeup. Long sleeves. Not too smart to get a skull/ship/naked girl (?) permanently marked on you. You have to button your cuffs all the time.
Mr. Grimm’s new this year. Youngish, if you can call thirty young. But the tattoo is interesting. I can’t tell exactly what it is because I’ve never seen the full extent of it.
It makes me want tattoos. I want one that’s worse than whatever his is.
He’s got a constant complaint going that I could work up to my potential if I’d only pay attention instead of burying my face in a book while he lectures. He can’t lament too successfully, considering that I am one of, oh, what, four people in this school who read.