Magonia(2)

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 doppelg?nger 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 f*cked up. I have been since I can remember. There’s not a version of my life that isn’t f*cked 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.)