Just as we’re about to exit the house, I lose control of my head for the third time: it drops to my chest, I lose contact with my headswitch, and my wheelchair slows to a stop halfway over the threshold of the door.
I let out a long breath, staring down at my lap as my head lolls, and feeling the pressure of anger building in my chest. “Joel,” I say, “can you go and get the neck brace, please?”
“Okay,” he says, but before he goes, I see his square fingertips approaching my chin, to help me tip my head up again.
“No,” I say, before he can make contact, “I’ll try myself.”
His fingers withdraw, he says “Okay” again, and I hear his footsteps receding toward my bedroom.
I stare down at my hands, one palm up and knocking its back against my thigh, the other palm down and shaking from side to side, fingers and thumb stiffly extended downward. My head bobs on my bent neck, immune to my internal litany: Up. Pick it up. Pick it up. Pick it up. It’s 8:30 in the morning, on a day that I’ve been waiting for for months, and I already feel defeated.
Joel’s footsteps approach again, just as I finally recover control of my neck and heavily lift my head back into position against the cradling headrest. In my lap, my hands twitch and tap. I swallow and watch out of the corner of my eye as Joel approaches with the padded beige brace, fits it into place around my neck and velcros it shut. His weathered face is neutral, workmanlike; he’s let a couple days’ worth of pale gray stubble grow in.
“Yup,” I say when he looks at me to check comfort. He nods, I press my head back against the center switch again, and we move off. I hate how secure the brace makes me feel.
We make it onto the 8:45 commuter rail train without further incident. Once we’re situated, Joel tucks my right arm back onto my lap – sometime in the past five minutes, it had made its way over the armrest to flop against the side of my chair – snaps my phone into its mount on my armrest, and fits my wireless earbuds into my ears. He taps the phone screen into life for me to check music selection. Currently on the display is Fleet Foxes, Helplessness Blues.
“Kind of on the nose, don’t you think?” I say to him, and am surprised by how much better it makes me feel to smile, even sardonically.
He snorts, smiling back briefly.
I address my phone: “Sam, please play Fiona Apple.” I watch as the display registers the command, blinks over to Fiona. Meanwhile, Joel settles back for the ride. He’s by far my favorite aide because he is so capable of silence – although my mom worries that it “exaggerates my tendencies.” What “tendencies”? I shoot back at her, whenever she tries to bring it up. It’s too convenient, how much my sharpness can still take her aback, send her retreating into hurt silence. We’re both sensitive, finely attuned to each other’s moods and motivations; but I’m the only one hard enough, self-interested enough, to use it against the other.
I know, for example, that when she goes silent in moments like that, she’s thinking: At least he’s still seeing his therapist. And I know that she’s blaming herself for not being able to make me better, happier, herself.
I register the fact that the thirty-something, pencil-skirted woman in the seat across from Joel and me has been staring at me for the past few minutes. I move my gaze to her and stare back evenly; she immediately drops her eyes away, turning red and tucking a strand of hair behind her ear. I shift my chin against the neckbrace to look out the window, and watch as the fields, sparse woods, and occasional suburban houses slide by outside. Whenever I feel anticipation lifting in my chest at the thought of what might happen next, I force my breaths to stay smooth, deliberate, pressing back against anything like excitement, optimism.
Sometime later, I’ll say to Paul, or dream of saying it: What I want is a sense of containment.
We arrive at the university campus. I like it here, the luxuriously wide paths cutting smoothly through well-tended lawns, the elms and oaks rustling overhead. It’s especially nice during the summer, when students are sparse – just occasional figures glimpsed in the distance – and the columned brick buildings seem temple-like, reserved, calm. I can’t help but relax as I cruise down the slope towards the neuroscience institute; in moments like these, with the warm, humid air rushing by, the random motions of my arms and hands feel more expressive, as if they’re moving with me, not against me.
It’s a space that I inhabit only briefly, and when the sense, the impression of integrity, passes, I don’t like thinking about it.
I function in spite of my body, I told my therapist once; I planted a flag there, then, and have yet to shift it, despite her best efforts, and my mother’s, otherwise.
Spite is a sharp word, a strong word.
The neuro building is at the bottom of the hill; a pair of women drinking coffee on a bench outside watch curiously as I skim by and Joel hits the handicapped button by the glass doors for me. Despite my best efforts, my heartbeat is rising in my chest, and the motions of my hands accelerate. The back of my right hand slaps repeatedly against the base of the armrest, until Joel moves it for me so that I can hold it captive, at least temporarily, in between my thighs. I thank him with my eyes. As he hits the up button on the lobby elevator, even my feet start pawing against the footplates, my upper body slumps inwards against my chest strap, and, regretfully, I know I was right to ask Joel to get the neckbrace for me.
We ride up to the fourth floor, take a left – even with the neckbrace, it takes me a moment to roll my head enough to press against the left headswitch – and find the doctors waiting for us outside of the Field lab.
Dr. Dani Field, Ph.D., is a mechanical engineer by training, who shifted into biomechanics during her graduate degree, with a further detour into machine learning during her postdoc. I have read all of this on her lab website, over and over again, clicked on each of her academic publications, even read each of her three students’ bios, examined their photos, too; she has a small lab, a young lab, I’ve inferred. She’s a little older than me, in her mid-30’s: a small, wiry woman with a small, square face, large dark brown eyes, sparse freckles, crinkly light-brown hair pulled back into a little tuft of a ponytail.
Dr. Paul Zhou is the neurologist; as an undergraduate, he stumbled into taking, and later returned to TA, a class on assistive technology, an experience that his online bio describes as “formative.” He’s a bit older than Dr. Field, maybe early 40’s at the most, a trim Asian man with an angular, tapering face, very thick dark brows, thick hair swept back. His gaze, and his posture, are intensely still. I feel a sudden sense of gravity when I see him.
“Matthew? Good morning!” Dr. Field says, giving a little wave; I recognize her pleasantly raspy voice from the couple of phone calls we’ve had. “It’s so exciting to finally meet you.”
“Good morning,” Dr. Zhou echoes, almost in a murmur.
“Good morning, Dr. Field, Dr. Zhou,” I return after a moment of struggle; if I didn’t have the neck brace, my head would be on my chest again, and my speech is more slurred than usual, my tongue thick and uncooperative. “This is my aide, Joel.” From my peripheral vision, I can see Joel nodding a hello to them. I am almost overwhelmingly nervous now. I want to say something more about how excited I am, something gracious and encouraging, but all I can do is smile back as my body flails around me; my right hand has escaped from between my legs and is now waving in large arcs in front of my face.
“Come on, let’s go into the lab,” Dr. Field says, her smile small but bright; she steps back to open the door for me. I lean back against my headswitch.
Inside is a midsize room brightly lit with fluorescent lights, the walls lined with black-topped workbenches cluttered with tools, wiring, clear plastic bins of small electrical components; textbooks and notebooks sprawl on overhead shelving. Directly facing us is a workstation with two massive-screened Apple computers and steel arms holding aloft a couple of video cameras at different angles; the cameras’ lenses point at a smaller table whose surface is covered with large-gridded graph paper. Another woman, plump, with large quantities of curly black hair, is sitting with her back to us at one of the Apple computers, setting up an array of software windows. As we come in, she glances over her shoulder, and I recognize her as Priyanka, one of Dr. Field’s three grad students. “Hi!” she says abruptly, her eyes widening, almost as if we caught her doing something she wasn’t supposed to be doing.
Dr. Field puts a hand on her shoulder briefly, giving her an encouraging smile. “Matthew, this is my student Priya Chopra; she did most of the coding on the machine-learning side of things for this project, so she’s really excited to be working with you today.” Priya bobs her head, still looking nervous; I can’t tell if she’s worked up about the trial or just uncomfortable to be watching my body flail – both of my arms are waving back and forth now, at full extension – but the sense that it could genuinely just be the former puts me, relatively speaking, at ease. I remind myself that, at this point, Priya should have worked with a fair number of people who look like me.
Dr. Zhou goes to sit at the workstation with Priya, asking her a question in his almost-murmur; my gaze follows him, although Dr. Field is speaking to me now.
“Soooo…” she says, and when I look back at her hurriedly, I can tell she’s going through a mental checklist. “Let’s see. We have all of your paperwork in electronically. Great. I’m going to have to give you a bit of an orientation spiel, and I might end up repeating a lot of things we’ve already talked about, but it’s easiest for us if we know that everyone who comes in for their first trial is starting from the same page.” She looks to me for confirmation.
“Sounds good,” I say, and try to smile again through the nervousness, uncomfortably aware of the constant rustling and creaking as my body shakes my wheelchair, the occasional slaps as my hands or arms make contact with an armrest or my own body.
“So today,” she continues, “we’re going to trial your left arm. That –“ she points at the small graph-paper-covered table in front of the computers, “- is going to be your ‘landing pad.’ Can I ask you to move to a position where think you’d be able to rest your arm there reasonably comfortably, and then take off your shirt so we can get you prepped?”
I appreciate that she asks me instead of Joel. After I’ve maneuvered my chair into position alongside the table, I give him a nod, and he approaches, removes my neck brace, undoes my chest strap, gently captures my flailing arms to thread them behind him as best as can be managed. He leans me forward against his chest until he can reach behind me to grasp the bottom of my t-shirt and pull it up over my head. My arms are so nuts that I almost want to laugh as he patiently extracts them from the sleeves, but I can’t because I’m oppressed by my awareness of how politely Priya, and Dr. Zhou, are not-watching all of this happen.
Finally Joel lays me back against the seat, straps me in again, and I try to compose myself, think about a bigger picture than my exposed self, my thin, slumping torso. For science, Matthew, I think, only a little ironically.
Joel moves his hand to the neck brace that he’s set aside and looks at me questioningly. I ask Dr. Field, “Is it okay to have my neck brace on, or will it get in the way?”
“Hmmm… let’s start with it on and see how far we can get. Sounds good?”
“Sounds good.” Joel puts it back on for me, I thank him, and he moves back to sit in a chair that Dr. Field pulls out for him.
“Dr. Zhou will prep your arm, now. And I’ll give you the spiel.”
“Great.” I fight to take deep breaths. I think about what might or might not happen next. I think about whether my life might change, or not; and if so, how much, how soon. I think about whether it would be enough.
Continue to Chapter 2
Continue to Chapter 3 (end)