“Then why could not E.E.P. help us?” I asked.
Pastor Jeff winked. “Because they are not very E.”
This could mean that they were not very effective or that they were not very educational, and even though I do not like when you cannot tell which, it was okay because Pastor Jeff was making a joke and both were funny.
He was also right about spectrums.
For instance, except on green days, I only like yellow things.
I only eat yellow foods. I only drink yellow drinks. (Except coffee. I drink coffee because even though coffee is brown, it is also really great.) I sleep on yellow sheets, get dressed in yellow clothes, study yellow subject matter. Choosing only yellow is not as limiting as it sounds. A lot of things are yellow. If I have to do a report on an animal, I pick a baby chicken. If I have to do a report on a fish, I pick a Zebrasoma flavescens, which is Latin for yellow tang. If I have to do a report on a song, I pick “Yellow Submarine” by the Beatles, which I know was written for people like me who prefer yellow because otherwise it does not make any sense. My mother says it is a good thing it rains sometimes or else I would never eat a salad, but this is not true. I would eat egg salad. My mother also tries to pass off pale orange and very off-white things as yellow, but I am not fooled.
All of which proves Pastor Jeff’s point. I may be at the far end of the flexible-about-food spectrum and the normal-about-colors spectrum and the easy-to-buy-clothes-for spectrum, but on the yellow spectrum I am firmly in the center.
Three
It’s not that it’s not hard to be me. Or the mother of me. It is. Monday is a stickler for many things, including language, which is why she likes the term “birth defect.” I was born defective. Harsh, but true in some ways. Monday doesn’t care for “some ways.” Too vague. Mab—who is infatuated with vocabulary and chooses longer words whenever possible—says “congenital disorders.” Nora objects to both. You are lovely just the way you are, she insists, neither defective nor disordered, so she goes with “congenital anomalies,” never mind that in Bourne—the only place we ever are—I’m not even all that anomalous. Whatever you call conditions like what I have, sometimes they’re inherited and sometimes they’re accidents, and sometimes it’s just because shit happens, but in my case, in all our cases, it’s none of those reasons, and that is worst of all. There are ways, many ways, in which Bourne has destroyed us.
But there are others in which Bourne is a blessing. Be it ever so humble, there is no place like home. There are very few stairs here, but any place that has even one also has a ramp or a lift. The shops have automatic doors, broad aisles, pull-down shelves, and low counters. All the restaurants that remain have tables that fit my chair and room enough to navigate between them without accidentally bumping someone and spilling their Chianti. We have only one place to buy clothes, the Fitwit, but it sells pants that are cute and comfortable even if you’re only going to wear them sitting down, shirts that are seamless and label-free, tops that can accommodate a G-tube, belts and zippers you can do one-handed. They have a whole yellow section just for Monday. Bourne’s public transportation’s not accessible but only because we don’t have any, which is only because there’s no place to go. Even the vending machines are low down. And best of all, enough Bourners use wheelchairs that I don’t spend all day looking at other people’s asses.
We don’t battle for medical care here because Pastor Jeff is the only option anyway, and there’s no fight with the insurance companies because he struck a deal with them long ago. Maybe, in his man-of-the-cloth hat rather than his man-of-the-stethoscope one, he appealed to their better natures, or maybe he pointed out that maximum claim reimbursement was a good PR opportunity in the immediate aftermath when so many eyes were on us, or maybe it’s these companies’ there-but-for-the-grace-of-God knowledge that however outrageous the request, we are not faking it. Or maybe it’s just that there aren’t enough of us left to make it worth the haggle.
Even the equipment we need is readily available. Much was donated at the beginning. Even now, companies looking for the write-off, or eager to shed and unload, send our way their functional but misshapen seconds, their working-now-but-didn’t-at-first refurbs. We aren’t picky. We understand not everything that looks broken actually is. But mostly, we have Tom Kandinsky, out-of-work engineer, tool maven, fix-it wizard, whose plan, like the Cubans’, is repair repair repair. He maintains a depot of spare parts—tires and screws, covers and seals, solar chargers for the tablets, hacks for lives navigated in chairs. Everything is shared, recycled, brainstormed, and upgraded. When my wheels clog with hair and gunk, Tom cleans them out. When I need to do an experiment for chemistry, he swaps out my regular tray for one with extra cup holders. When I miss my mouth and spill all down the front of me, he’s got scarves in any shade and style you can name to lend until I can get home to change. He gives me mobility. He gives me stain-free self-respect. And better than both of those, Tom gives me a voice. Or rather, a Voice.
My AAC—Augmentative and Alternative Communication device—used to require a whole high-tech speech-generating big to-do. Now it’s an app on my tablet and Tom-tweaked speakers that go wherever I do. With my perfect right hand, I can type something in, and my Voice reads it aloud. Or, because typing is slow, I can speak with symbols. Touch the Food folder and a list of things I might want to eat pops up, and I can say to my mother, or really anyone, “Ice cream please.” Touch the Daily Life folder, and a few strokes later I can say that I’m tired and ready for bed. Touch the Let’s Talk folder and I can say, “Fine thank you” or “How is your day today?” Touch the Frequently Used Phrases button, and I can say, “Monday! Shut up about yellow things!” It’s smart, predictive, so it’s learned my speech patterns, which words most frequently follow which, how teenage girls talk, how I am different from most teenage girls.
Here I am not deviant from the norm. In Bourne, we know there is no norm. But also in fact, for Bourne, I’m pretty normal. There’s no need to fight to mainstream me at school because I am the mainstream, and school is set up to accommodate my needs. Well, some of my needs. Bourne High is equipped to keep students like me alive. But alive is not the same as educated. Let’s just say I’ve read ahead. Nora says keeping up with me intellectually would be a challenge for any high school, most colleges, lots of postdocs, so no one is to blame for Bourne High’s insufficient intellectual rigor. I wouldn’t believe her (as far as proof you’re a genius goes, “My mom thinks so” isn’t especially convincing) except that it’s a rare thing for which Nora doesn’t think someone’s to blame. Sometimes I go in anyway. Mostly I homeschool myself.
But not at home. I can’t be home alone all day. So mostly I homeschool myself at Nora’s work, a mix of independent studies and online courses, theories I research, ideas I wonder about, rabbit holes I wander down. You’d be surprised how many experts are willing to answer strangers’ questions. You’d be surprised how much valuable information the internet has, too, in addition to all the lies and yelling and stuff for sale.
Nora works four jobs—to make ends meet, though her ends are many more than just food on table, roof over heads. Her main job is therapist, an important job in any town and in this one more than most, in the first place because she’s the only one and in the second because everyone here has survived what happened here. She’s on a team of two, the other being Pastor Jeff. One of the cruelest ironies of Bourne—a town which is full of them—is that we have greater body-care, mind-care, and soul-care needs than most places, but therefore we can only afford to hire two people to meet them all. No matter what you believe and no matter what condition you have, Pastor Jeff is your only option—for hope, for healing, for a higher power or, failing that, a treatment plan to mitigate all your earthly suffering—so Pastor Jeff does for everyone, believers in all gods and even those of us who have been forsaken by every single one of them. And if you still feel depressed or anxious afterward—and who wouldn’t?—then you come to see my mother.
They share the medical clinic, which is really just a little house. Her office used to be a bedroom—there are ages and pencil marks charting a long-gone child’s growth along the doorframe—but now holds a nubby orange sofa across from a desk piled impossibly with paperwork, patient files, books, forms, and a decade-old computer. There are pens lying lame everywhere because she picks them up, finds them inkless, and puts them down again instead of throwing them away.
Today is a bad day for me, so I’m not just at work with her but parked in the corner of her tiny office, researching solar wind and helioseismology for the online astrophysics course I’m taking this semester. “Ooooo,” I whisper. Nora. It sounds like the wind. The regular kind. Even on a good day, I can only manage simple syllables, and since Mama, Mab, and Monday alliterate, I call our mother by her first name. Even when I can only say the middle bit, she understands.
Chris Wohl peeks his head around the door. Nora waves him in. He sits in the middle of the orange sofa and makes himself small.
“Hi, Chris, it’s good to see you,” Nora begins, and when that gets no response, “As you can see, Mirabel’s come in with me today. If you feel more comfortable, she’s happy to sit in the waiting room.”
Most of the time most of her patients say yes, please, they would prefer me to sit in the waiting room. I used to take offense, like they thought I couldn’t be trusted. Then I realized it was a great compliment. In other places, kids who can’t walk or talk or always hold their own heads up are imagined to be stupid, imagined to have minds that don’t work either, imagined to be something less than human. People think of them like dogs, and half the fun of dogs is you can tell them anything. People think of them like furniture, and who censors themselves in front of their sofa? So Bourners’ unwillingness to spill their guts in front of me is actually high praise.
But Chris raises his eyes from the floor and gives me a tiny smile that seems like it might be his first all week. “I don’t mind if you stay, Mirabel.” He shakes his head, wispy hair flying away in spots, matted down in others. “You’re a good listener. Maybe you’ll be a therapist like your mom when you grow up.”
He’s just making conversation, but there’s no way I’m going to be a therapist when I grow up. I’ve already sat in on—or waited outside of—more therapy appointments than any sixteen-year-old should.
“How are you this week, Chris?” Nora says gently.
“I haven’t used, if that’s what you’re asking.”
It isn’t. This is obvious, even to my untrained eyes. He is sweaty, despondent, leaky—nose running, eyes running, teary. When he’s used, he’s happy, euphoric even, and jittering like a lightning bug.
“Good for you.” Nora keeps her voice neutral.
“Leandra’s giving me shit because she thinks I scored. She’s not mad I have it; she’s mad I’m not sharing. But I’m clean.”
“What made Leandra think otherwise?” Nora is very careful to keep any suspicion, any doubt, off her face, out of her tone, but the wife is rarely wrong in these cases.
“These two enormous delivery trucks drove right by the house the other day.” Chris seems like he’s answering a different question. “Some kind of restaurant supply company.” He looks up, clocks Nora’s skepticism. “That’s what Leandra thought too, but I swear. I called her to the window to see, but by the time she got out of her chair and made it over, they were long gone.”
He pauses for a moment while we all three picture how long it takes Leandra to cross a room these days.
“She said I was lying to screw with her. I said she knew I’d never do that. So then she said I was tripping, and what was I on. I said I wasn’t on anything, and the trucks were real. They had pictures on the sides. One was a fancy fridge with a screen in it. One was this sprawling stove with like ten huge burners. But she said did I know of some kind of magical new restaurant going in around here. And I said maybe it wasn’t a restaurant. And she said what else would two restaurant supply trucks be doing here. So I said there was probably enough gas in that stove you could use that shit to escape the planet in case of the apocalypse. I was just trying to make her laugh.”
He laughs a little himself, but not like he thinks he’s funny. More like he’s embarrassed he thought Leandra would.
“And what did she say to that?” Nora prompts.
“She said, ‘Too late.’”
Nora nods grimly.
But I’m thinking of his delivery trucks. I’d be with Leandra and Nora on this one except for that backhoe Rock Ramundi and I both saw and the truck full of strangers and tools Alex Malden did. Leandra’s right that it can’t be a restaurant opening. For one thing, a restaurant never opens here. For another, we’d have heard about it. But there’ve been too many strange sightings for this just to be something Chris imagined while high.
But Chris isn’t thinking about the trucks anymore. “I can’t help her if I don’t use. You know? I can’t help her.”
“You can’t help her if you do.”
“That’s not true. You know that’s not true.”
Nora nods. She means she understands what he’s saying, not that she agrees. But I do. I agree. Chris and his wife Leandra both worked at the plant. She got cancer and lost her arm and shoulder and much of her upper torso. She looks like she’s standing half out of a door even when she’s in the middle of the room. Maybe if she’d been born with only one arm, like Violet Alison and Otto Mathers in my class both were, she’d have had no trouble doing without, but she was too old. Now she needs help.
Chris has too much pain to help. Maybe it’s physical pain like his nerves are on fire, like his joints rub against each other like sandpaper, like needles are poking him. This is what he tells us some days. Or maybe it’s emotional pain like his job is gone and his town is dead and his body hates him and half his wife is missing. Or maybe it doesn’t matter which. The cure is the same. And now if he doesn’t come see Nora once a week and pee clean in a cup—one of the terms of his plea bargain—the state will send him to jail. So actually the cure does not exist.
“They help me. And they help me help her. And otherwise?” His question is not rhetorical. He is really asking. Otherwise what? If not drugs, then what?
Nora has an answer to that. “How are you fixed for dinners?”
He looks up from the floor again as if dinner is not something that ever occurred to him. From the look of him, maybe it hasn’t.
“I’m going to freeze you a bunch of casseroles and bring them over Wednesday evening,” Nora says. “Can you both be home at seven?”
Baking is Nora’s third job, and she does a lot of it. It’s not really a job, though, because no one pays her to do it. When she says “a bunch of casseroles,” she means two or three, but also a few batches of cookies, a few batches of scones, half a dozen pies, a couple of cakes. It’s true Chris and Leandra need fattening up, but this is the scale of baking Nora prefers under all circumstances.
She looks almost as skinny as Chris. Partly that’s because she wears my dad’s shirts, and they’re too big for her. Partly it’s because at dinner she is often feeding me instead of feeding herself.
When Chris leaves, I try to tell her that cooking for the Wohls is not her job, that he has to learn to do life without drugs but also without her, that there are hurts she cannot fix and holes she cannot fill, but there are no preprogrammed Pep Talk folders and it’s a lot to type, so I tell her with my rolling eyes, sideways from my lolling head.
“I know,” she answers me. “But what can you do?”
One
Two years ago, on the day we started ninth grade, the first thing we did as high schoolers was herd into the auditorium for a welcome meeting and getting-to-know-you games. Mrs. Radcliffe said we were young adults now, with opportunities and responsibilities. She said high school was an adventure we were lucky to be embarking upon. She acknowledged that this would be the last school many of us would ever attend. She said we were rockets sitting
on a launch pad, and from here, we would blast off to college or to careers or to parts unknown, worlds unexplored, mysteries unfathomable. We were all pretty sure she got this speech from a book because there was no way she wrote it for Bourne High. Then she had us write down and sticker to our shirts two adjectives that best described us.
Mirabel’s words were “perspicacious” and “immured.” If Mirabel were studying for the SATs, she wouldn’t have to study for the SATs.
Monday’s were “yellow” and “yellow.”
Petra’s were “here anyway,” which now I’m pretty sure are adverbs, but it was only our first day of high school so we didn’t know much yet.
Mine were “bored” and “boring.”
Bored because it is dumb to play get-to-know-you games with a bunch of people you got to know at birth which is true not just of the ones I shared a womb with but everyone else in that auditorium as well. Bored because there is nothing to do in Bourne. Bored because high school is supposed to be a fresh start, and there were no fresh starts happening that day. Or any day.
But much more than bored, I am boring. If you asked anyone I know to describe me, they would say, She’s the normal one. I’m not short or tall, skinny or fat, buff, buzz cut, braided, or dyed. I’m not pierced, tattooed, or even mascaraed most days. I’m a boring straight white girl, but I don’t think much about race. (Maybe so. I’m a boring straight white girl so I don’t think much about race.) And my sexuality doesn’t matter since there’s no one in Bourne for me to date anyway. I am ordinary, unremarkable, average, your typical American teenager. Picture a high school girl. That’s me. That girl in your head right now? Me exactly. I could not be more normal if I tried.
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