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.