Beyond the special everything already in place, of course.
For example, there’s a buddy system, which means there’s presumably always someone sideways-watching my progress through the halls in case I fall down choking. I have no particular faith in this fail-safe. Couldn’t tell you who was on Aza Duty today.
Lecture mode, though, is actually relatively typical.
Principal: “Ms. Ray, you know better than to create a disruption in the classroom.”
I want to say, “Define ‘know.’”
Because sometimes I find myself doing things I “know” better than to be doing, but that doesn’t stop me. The activities in the corners of my brain call to me, and they’re strong. On a daily basis, I have to actively not think of them, if I want to retain focus.
In eighth grade, I lost vigilance, and an hour later, I’d turned my copy of Grapes of Wrath into a circus of a hundred and thirty-four origami animals, ostriches and elephants, train cars with actual wheels, acrobats.
There was a bad period in third grade when it was all I could do to leave the aquarium alone. I kept feeling sure the fish were looking at me. And then again in sixth, when my classroom had a canary. That time, I swear, it did talk to me. Not in words. It just sat on its perch, staring hard at me and singing, incredibly loudly, so loudly that it actually had to be moved to another class, because it disturbed everyone.
Birds. I’ve never not had trouble with birds. I’m the person who gets dive-bombed by whatever’s flying by. I wear hats when I’m outside.
Anyway, principal’s office.
Aza: “I saw something weird in the sky.”
Aza’s Dad: “I apologize for my daughter. Her medication—”
Aza (disliking hallucination implications): “No, you’re right. I got bored. So I made it up. Leave it.”
Principal (eyeballing to see if he’s being mocked): “Just no more, Ms. Ray. No more of your antics.”
Antics is pronounced like a dirty word.
Upon extrication from the principal’s office, I pressed my face to the window in the stairwell to try to see whatever it was I’d seen before. But no, nothing. It was gone.
Now my dad looks exhausted. He cooked. Tonight, some sort of noodle casserole with desperation sauce. Peanut butter involvement. He swears it’s legitimate Thai, but there’s no macaroni in Thai food. Nor jerky. I’m pretty sure there’s jerky in there.
“She did see something,” my dad tells my mom.
My mom looks at my dad, who regularly gets into trouble for believing things that defy logic. He’s a passionate imaginer. My mom and Eli are the house realists. My dad finally shrugs and turns back to the stove.
“She hallucinated something,” my mom says. “Not saw.”
“She has a vivid imagination,” Eli says, and snickers at the stupid phrase, which has been used on me for as long as I can remember.
“Whatever,” I say. “It’s over. Leave it.”
I’ve already been out again, staring up at the sky—which is dark, plus a skinny slice of moon—and there’s nothing whatsoever unreasonable about it. It’s just itself, the sky, and there, the North Star.
I like the sky. It’s rational to me in a way that life isn’t. Looking at it doesn’t suck the way you might think it would, given all the dying-girl-stares-at-heaven possibilities. I don’t think of the sky as any kind of heaven item. I think of it as a bunch of gases and faraway echoes of things that used to be on fire.
The proper name for the North Star is Cynosure, named after a nymph. It’s a scip steorra, “ship star,” for navigation. In some of the old stories (give it up for the many peculiar and awesome philosophers of the 1600s—in this case, Jacques Gaffarel, and no, I can’t explain how I happened upon him, except that at some point, deep in the library, I saw a circular diagram of the sky, and the stars looked like breeding fruit flies in a petri dish, and I was So Obsessed), the patterns of the stars form letters. Celestial alphabets. Writing that gets rewritten as the earth moves. If you look at the sky that way, it’s this massive shifting poem, or maybe a letter, first written by one author, and then, when the earth moves, annotated by another. So I stare and stare until, one day, I can read it.
When I was little, I tried to sneak out at night to get my fill of the stars. I had a plan involving bedroom window, drainpipe, up instead of down. My mom busted me as I was dragging the blanket onto the shingles, but she surrendered and took me up at four in the morning, accompanied by all kinds of just-in-case breathing equipment. We looked at the sky together, wrapped in my comforter, with a thermos, a flashlight, and a book of constellations. We just sat there in silence, and periodically, my mom would show me one of the star pictures and explain its meaning.
So when I complain? I complain with this context. My parents are the kind of parents people wish they had. They had no problem setting up a lamp with a shade poked full of holes that project the entire Milky Way onto my bedroom ceiling when I turn the light on.
Imagine if you could see all the stars we can’t see anymore. If the lights all got turned off, all over the world, the sky would be blazing and crazy, the way my lamp makes it look.
I don’t know how to navigate by any of the stars, but I read once about someone who took on the entire ocean on a little handmade raft, from South America to Polynesia. The Kon-Tiki, his raft was called. He was a Norwegian explorer named Thor.
I kind of wish my name were Thor. It implies warrior-ness. But, no. Aza. Named after what? No one.
I didn’t even start out called Aza Ray. This is the name they gave me after the breathing problems started. Before that, I was called Heyward. (Heyward was a great-uncle. Eli is named after a great-uncle too. I’m not sure what’s wrong with my parents. Could they not name us after our aunts?)
I’m still Heyward on official forms, which, Tell Not a Soul. But—
Mom: “That day, after we thought we were going to lose you, we suddenly knew your name was Aza. You were meant to be named after the full spectrum, A to Z. It was perfect.”
Dad: “It just came to us. It was weirdly spiritual. We figured, who defies that?”
This Aza-ness, though, contributed totally to my freakitude. For part of grade school, I went by Ava, because some teacher screwed it up, and I let her. Eventually, I was busted in a parent-teacher conference.
Aza. For years, I thought that if I had to be a palindrome, make me kuulilennuteetunneliluuk. Which is the Estonian word for the part of the gun a bullet whizzes through on its way to kill you.
If you’re gonna go there, go there all the way. Right?
Instead, I’m the alphabet. Depending on your worldview and knowledge of the history of the alphabet, there could also be a silent & in there. The ampersand used to be the twenty-seventh letter. You’d recite your alphabet and at the end, you’d say X, Y, Z, &. So if you’re doing my name, it’s an alphabet loop, and that means that between Z and A, you get to add in an & too. Az(&)a.
There’s an awesome thing about having that & in my name, as follows: the symbol itself is the Latin word for “and,” as in et, with its two letters twisted together. So, there’s an invisible extraterrestrial in my name.
Jason and I discovered this five years ago and we were obsessed with my internal ET.
I mean, how could you not be? “Phone home” and all of that.
Do you see how I’m making this awesome and not just weird? Do you give me credit? This makes me feel slightly better some days. Other days, not so much.
Today? Today sucks.
There’s a rattle in my chest right now, and I’m pretending there isn’t, but something about the misery of maybelikelyprettydefinitely hallucinating again, something about the fact that I’m a test case for every new drug the market invents, puts me into such a miserable place that before I know it I’m sitting at the kitchen table with my entire family, crying my eyes out, and coughing simultaneously.
They pack me off to the shower, where I sit on a stool in the steam, naked an
d bitter, inhaling water and trying to forget about the ship I saw, the words yelled out of the sky, trying to forget about everything, including sixteenth birthdays and parents and sadness.
“You know you’re just special, baby,” my mom tells me as she’s closing my bedroom door. “We’re in this with you. You’re not alone. We love you.”
“Even if I die?” I say, because I am weak. “Will you still love me even if I die?”
My mom stands in the doorway. I see her trying to calm herself down enough to answer me. I can see her wanting to say “You’re not going to die,” but she doesn’t let herself, because that would be full-throttle lying.
She’s making herself meet me in this stupid messed-up body that has not enough time and not enough stability. Greta’s gripping my doorframe hard, but her face says, Don’t worry. She swallows, and then smiles at me.
“Even if you die,” she says. “Okay? We’ll love you forever and forever. Until the end of time.”
Because I feel very very shitty, I think about saying “You won’t. When people die, you forget about them eventually. You have to. Time passes. Nothing’s that important,” but I don’t say it.
My mom walks away, quietly.
She thinks I don’t hear her crying in the hallway for an hour after I’m supposed to be asleep.
She thinks I don’t hear her start the car and drive back to the lab because that’s all she knows how to do, the slow-research fix, inventing a cure for something no one even understands.
I’d like my parents to not have to be constantly thinking about me and my issues. I have a vision of my mom and dad at a beach, drinking things with umbrellas in them.
We’ve never been to a beach. They’ve never been on a vacation by themselves, because: me.
So now I’m thinking halfheartedly about hitchhiking to some other city. Or stealing the car and driving there. I maybe-semi-kind-of-know how to drive. I learned three months ago, my dad beside me in the passenger seat, and my mom in the backseat, and both of them swearing they trusted me, even as I crashed into our garbage cans.
My Mom: “Don’t worry. Nobody ever died at two miles an hour.”
My Dad: “Snails?”
My Mom: “Lemurs.”
My Dad: “Shrews. Wait. How fast do shrews move?”
My Mom: “Shrews move incredibly fast. They’re predators. They take emergency ten-second naps, and the rest of the time, they hunt. You lose.”
My Dad (grinning): “You win.”
Me: “Um. Should I start the car again?”
I haven’t actually gotten my license. But I know how to drive at top speed, because they showed me that, too, in the middle of the night, illegal on the highway, far out of town. I’ve never done it alone, but I did it with my parents. I drove really, really fast.
If I could drive really fast to another town, I could die there. Possibly in a hotel. And save everyone the catastrophe of watching me go.
Eli, I think. No matter what I do, this is going to utterly disaster her.
And all night, I’m thinking about how whatever I heard coming out of the sky, it wasn’t English, and it wasn’t even really words. But it was familiar. I felt it in my bones, in the strangest way.
I felt like something was ringing me like a bell.
UNCORRECTED E-PROOF—NOT FOR SALE
HarperCollins Publishers
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I wake up at 4:30 a.m., sweating, panicked, heart pounding, coughing. My skin feels tight enough that I’m not sure it’s not ripping. I walk shakily to the bathroom and look in the mirror. I look like me. Just the in-pain version.
I dream for the rest of the night, weird faces, and feathers, and I keep feeling smothered, as though something’s pressing against my mouth and nose, and as though there’s something in my lungs. I wake up again, and it’s seven. The sun’s rising, and I’m coughing and convincing myself not to freak out.
I can’t get rid of the feeling of my skin pinching too close to my bones, snagging on itself. My mouth feels weird too. My cough’s epically worse than it was last night.
So, no school. Instead, doctor, where I put on my own backless white gown, with name embroidered—small perks—and my own slippers.
I’ve been known to pretend things about these events. Usually, it’s the Black and White Ball. Truman Capote. My backless white is a gown constructed of silk and petticoat, and maybe some nice netting made of Audrey Hepburn’s soul. (Audrey was invited, but did not attend.) Except that at that famously glamorous party, I don’t think anyone’s gown was bottomless. No joy like the feeling of frozen upper thighs against an examining table.
This is a children’s hospital, though, so there are other things worse than me. I’ve seen curtains pulled shut suddenly, and on the other side the unmistakable sound of parents sobbing. I’ve seen the Make-A-Wish people roaming the hallways, costumed and ready for action, and sick kids looking like the world has flipped over and given them everything they ever wanted at the last possible moment.
What they want, inevitably, turns out to be things made of trying to be the same as everyone else. Once I saw a certain floppy-haired teenage singing idol in red leather pants shambling his way down the hallway to make someone’s wish come true. A while later, I saw him leave, looking brain-broken.
Classic mistake: he’d shown up convinced he’d make the blind see and the dying live. It doesn’t work that way. Famous people aren’t magic. Despite their thoughts to the contrary.
A kid comes tearing around the corner, hairless and bleating like some kind of very hungry, quite large baby bird. He’s chasing a clown, though, not running from a doctor, so it’s not terrible.
The clown pauses in my exam room doorway and juggles her rainbow pom-poms. The three-year-old patient claps his hands wildly and looks at me with huge, excited eyes. Despite my bad mood, I end up smiling too.
Even though this is blatantly in violation of my rules against befriending fellow victims of the unimaginable, by the time my doctor arrives, I have the kid in my lap, and the clown is alternately blowing soap bubbles, and playing Over the Rainbow on a harmonica. Not a good song choice, in my opinion, but one I’ve regularly been exposed to over the years. Some people think it’s comforting to imagine being flung over a rainbow when you die, grabbed by your ankles by a bluebird, and swung into the void.
I mean, fine. There are obviously more upsetting possibilities. The kid’s humming happily along. Neither of us is the worst thing that could happen. We’re walking, talking, and coughing almost like regular humans.
Dr. Sidhu arrives and the clown carries the kid off into the labyrinth of hospital. My doctor begins her usual procedures of chest knocking and listening, as though she’s a neighbor trying to spy through some locked door.
Except that Dr. Sidhu is the kind of neighbor who can see through the walls. Her face doesn’t change expression. It’s the not changing that tells me something’s wrong.
“Huh,” she says.
“What do you mean, huh?” I ask.
I’ve known Dr. Sidhu my whole life. She never says “huh.” And this is my body we’re talking about. My organs are in strange places.
There’s a theory that things in my chest cavity got shifted during that early period of really, really not being able to breathe. One of my lungs, for example, is tilted far toward the center of my chest. My ribs are more flexible than they should be if I were anyone other than Aza carrying around a disease named Clive.
Clive the Jackass makes me flat-chested, pointy-ribbed, and lung-tilted. Otherwise, I’m totally awesome.
“There’s an unusual sound. Stop talking.”
I don’t want to stop talking, but I do, because Dr. Sidhu looks up at me and makes a dangerous face. She has little patience for the likes of me, yammering on through my appointments. She lassos her stethoscope around, and considers my heart. (Heart. Also misplaced. It’s never had quite enough room. We deal with this
shit, we deal, we do, but bless any intrepid doctor who ever tries to listen to my heart, beating where it isn’t. I’ve let some doctors try it, just to watch their faces when they think momentarily that I’m somehow walking and talking, heartless. Entertainment.) She takes me to X-ray, and disappears briefly to peer at the results.
“MRI,” she says.
Great. I can feel my dad, outside the door, dreading.
“I’m okay,” I tell him as I hit the waiting room, wheelchaired (it’s hospital policy). Into the MRI tunnel, where they give you earplugs but you still hear things popping and clicking and hissing and singing out as they ping along your insides.
Sometimes while I’m here, I pretend I’m a whale, deep down, listening to the singing and dinging of my whale family. Today I hear something more along the lines of: Aza, Aza Ray.
It’s like I’m hearing something coming from outside again. Or is it inside? No matter what, I hate it.
“Hold your breath,” says the tech. “Try not to cough.”
I try not to cough. I pretend “giant squid” instead of “whale.” Lights flash. Things whistle and pop and extremely beep and make me feel as though I ought to be listening to something else. I read a thing once about deep ocean creatures and how the noises of earth are messing with their sonar. Whole lot of lost whales beaching themselves in cities—things like that. I read another one about sound-chaos, how nature is supposed to be harmonious, but human noises are screwing everything up and now people are going wacko due to atonal everything. Maybe I’m already wacko.
Aza, go outside.
I press the call button.
“Do you hear that?”
“Hear what? The obnoxious noise? You know what this sounds like, darling, you’ve been here a thousand times,” says the tech, Todd, who is a friendly person.
Todd always gives me an extra heating pad before I get rolled in here. I love him, because he moonlights in a laser hair-removal clinic, dealing death to follicles. He has some very happy stories involving vanquishing unwanted whiskers from women’s faces. The patients in the hair-removal clinic are totally grateful all the time. Here, people tend to grumble. No one really likes getting an MRI, and everyone’s sick. “We’re almost done. Are you okay?”