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.