Dr. Zhou
moves towards me with a bin of materials, glancing down to sort through them
with one hand. He sits on a wheeled stool on the other side of the small table
from me, puts on a pair of latex gloves, and looks for my permission before
leaning forward to grasp my left wrist gently with one gloved hand. I try not
to be too obvious about letting out a shaky breath as he coaxes my left arm
into position on the table, easily containing its flailing. “Please let me know
if I do anything that makes you uncomfortable,” he says in his soft voice,
making direct eye contact with me for the first time since greeting me. I blink
in confirmation, and he starts pulling materials out from the bin, setting them
in order.
“So you,”
Dr. Field says, “are going to be our first trial with a subject whose
impairment is more on the severe end of the spectrum.” Her voice is
matter-of-fact, yet warm. “We’ve seen great results, really exciting ones, with
folks who came to us with lower levels of impairment, and those trials in turn
gave us loads of data for improving Priya’s software.”
“Is it all
people with athetoid?” I ask. I had been curious about this ever since I’d
first submitted my answers to the detailed questionnaire about my mix of
symptoms, range of movement, range of control.
“It’s a
mix,” she says after a pause to think. “Mainly we’re looking for people without
fixed contractures, because that really limits our ability to see short-term
improvement, unfortunately – although obviously it’s something we’d be excited
to work on in the longer term, restoring function…
“So, relative
to the general population of people with cerebral palsy, people with athetosis,
even ataxia, are probably going to end up overrepresented among our subjects,”
she concludes, “since spasticity goes along with contractures so much more.”
Joel lets
out a “hm” of interest.
Dr. Zhou signals
to catch my attention, and shows an alcohol-soaked gauze pad to me in warning –
I catch its sharp smell – before he starts briskly wiping down my whole arm,
even my shoulder, with it. I blow out a puff of air when the chill of the
evaporating alcohol hits and watch as the hairs on my arm stand up; my arm jerks
back and forth weakly at the elbow, the only motion available since Dr. Zhou is
still firmly anchoring my wrist.
“We can turn
on a space heater for you if you need it,” he says, motioning to indicate one
tucked under the table.
“That might
be nice at some point,” I admit.
He nods and
picks up a black Sharpie and a small plastic instrument, about the size of an
electric razor, with two metal prongs: “I’m going to be locating major
innervation sites now.” I nod against my neck brace, and as Dr. Field asks me
about my physical condition today, and tells me about the data they’ll be
collecting – video, nerve conduction, qualitative reports from me – Dr. Zhou
proceeds to press the pronged instrument along my collarbone, shoulder, and
arm, marking occasional sites of contact with Sharpie dots. Some places, he
follows up by attaching a little electrode. Others, some even on my hand, he
marks with round, bright blue stickers – “That’s for motion analysis of the
videos later,” Priya surprises me by putting in. She’s finished up at the
computer, and has scooted over on another stool to watch the preparations.
I’m
surprised by the realization that at this point, my self-consciousness has
drained away. I feel centered and expectant. Dr. Zhou’s methodical work, Dr.
Field’s questions and descriptions have been absorbing; the underlying
excitement and anticipation in the room is palpable, and infectious. As if
aware that it’s not in the spotlight, my right arm has calmed and lies limply
in my lap, shaking only occasionally.
“Priya,” Dr.
Field says, “while Dr. Zhou is getting the device in place, do you want to give
Matthew a rundown of how your program works?”
Priya’s face
lights up; “Sure,” she says.
“So you can
think of it as two parts, or two functions,” she begins, scooting forward on
her stool till she’s more comfortably in my field of view; I give a small smile
of appreciation. “One is subtractive, a filter. It looks at the nerve impulses
that your brain is trying to send, and kind of cleans up –“ she makes a brisk
sweeping gesture “— all the things that are confusing or off-base.”
“Okay,” I
say, glancing down to my left arm, which Dr. Zhou has temporarily released; it
flops and twists at random against the tabletop. There’s a lot of confusing
things going on there.
Priya’s eyes
have remained on my face. “So the filter part does its best to make sure the
confusing signals don’t actually get executed. If you know how noise-cancelling
headphones work, it’s actually kind of similar…”
“Destructive
interference?” I guess, reaching for high school physics – wave forms colliding
and cancelling each other out.
“Oh, yes,
exactly!” She looks delighted, and I get to feel good about myself. She adds,
“Well, it’s a bit different with nerve signals instead of sound waves – and
it’s called ‘collision annihilation,’ which I think sounds much more exciting.”
I smile; it
does sound like something that would happen in outer space.
“Okay,”
Priya says, visibly pulling herself back on-track when it’s clear she’d love to
dive more into the details. “The second part of the program is additive – it
strengthens. After the filter has done its work, it takes what’s there, it
identifies your intent, basically – “
she sets one fist out to symbolize “intent” – “and reinforces it.” Now she
clasps her other hand over the fist, building on it. “And that’s based on all
the data we’ve collected from subjects with no impairment. So,” she sums up
with a shy grin, “ideally, no more
bad signal, all good signal. And the best part is that with Dr. Field and Dr.
Zhou’s hardware, we can do it all noninvasively.”
I swallow
thickly, pause for a moment. “I’m getting so excited that I don’t really know
what to say,” I say finally, with a level of honesty that I would usually avoid.
That gets a chuckle from most everyone in the room; Dr. Zhou gives me a surprisingly
broad smile as he leans forward and begins strapping a set of small black
devices to my shoulder, one just beneath the end of my collarbone, the other in
a corresponding position on the back of my shoulder. They’re unexpectedly
heavy, and I feel a chill as an array of blunt metal prongs in their surfaces
make contact with my skin. I imagine that I feel a tingle of electrical
current.
“This is a
weaker version of what we would be able to do,” he puts in, “if we actually
implanted electrodes. But, obviously, there are trade-offs there.”
Do it to me, I want to say. Give me implants. Fix me. But I say
nothing.
I can just barely see over the edge of my neck brace that, to finish arranging
the devices, Dr. Zhou will have to harness them around my chest, too. He looks
to me. “Do you mind if I unstrap you, or would you prefer if Joel…?”
“You can do
it,” I say boldly, making eye contact. He looks at me for a moment, during
which I can’t read his expression, before he carefully opens my chest strap, leans
me forward to secure the devices’ black harness around my back, and then redoes
the strap, settling me back in place.
“Okay,” he
says, extending a couple of long leads from each of the devices and handing
them to Priya, who eagerly plugs them into what looks like a hard drive; the
leads from the white electrodes scattered across my arm, he plugs into yet
another device. I’d feel nervous about the assortment of trailing wires if it
weren’t clear that they’re long enough that even I wouldn’t be able to yank
them out.
“Okay, one
more thing.” Dr. Zhou turns back, fixes his dark gaze on me. “Matthew, we’re
going to be asking you to try a lot of movement with your left arm. Would it be
more comfortable, less distracting for you, if we secured your right arm?”
I grimace.
“Probably, yeah.”
“Okay. We
have a cuff, here –” he shows me a broad Velcro strap.
“That should
be fine,” I say shortly, and he moves around the table to cuff my right arm to
its armrest at the wrist.
Having my
arms strapped is actually something that I’ve gone back and forth on, in my
life; for the past couple of years, I’ve been going without, in a concession to
the ongoing campaign to convince me to act like I don’t entirely resent my
body.
“I think,”
Dr. Zhou says, “we’re ready to go.”
“Oh, my,”
Dr. Field says, and she actually clasps her hands together with excitement; I
kind of think that I might do that too, if I could. Joel leans forward in his
seat, resting his elbows on his knees.
“Everything’s
ready to record,” Priya says, the shy grin back on her face.
“Okay,
okay,” says Dr. Field, pushing back tendrils of her hair excitedly, and
stepping forward to stand next to Dr. Zhou across the table from me. “Matthew,
we’re going to start with some baseline recordings of your natural movement.” It’s not natural, I want to say, but
again don’t. “You’ll see a line of large black dots on the graph paper on that
table. Can you please do your best to line your arm up with those dots?
Whatever you can do; there’s no ‘wrong’ here, we’re just collecting information.”
I take a
deep breath. Once more, my heart is pounding. While finishing up with the
devices, Dr. Zhou had moved my thin left arm – now spotted with white
electrodes and blue stickers – back to my lap. Let’s go, I say to myself, and seize the fraction of control
available to me to lift that arm towards the table.
It arrives
above the table and gets stuck there, flailing back and forth horizontally
about a dozen times before I can convince it to flop to the table’s surface,
where it continues shaking back and forth, at least roughly centered above the
axis marked out by the black dots. “Is this what you’re looking for?” I say,
trying not to sound too sarcastic.
“Yes,” Dr.
Field says, “that’s great, thank you. Now I’m going to ask you to try to touch
each of the large red dots that you see at the corners of the table.”
Again I try,
and manage to sort of swipe the back of my hand over the first dot, but get
stuck there, and can’t for the life of me coax my hand, or arm, to shift to the
other corner; at this point my arm might as well not belong to me. “Not
happening,” I say tensely, watching my arm thump against the first dot.
“That’s
fine,” Dr. Field says, her voice soft and neutral. “We’ll do a few more of
these –“ and she leads me through about a half a dozen more exercises, while
Dr. Zhou explains that they’re isolating horizontal motion, vertical motion, motions
of the hand, elbow, etc. “Isolating” seems like a more than generous way of
characterizing it when my body is involved; it can’t have been more than five
minutes, but I’m straining both my concentration and my meager physical endurance
to the limit trying to accomplish anything resembling what they’re asking for. The
more they ask of me, the sloppier and sloppier my motions grow, increasingly
random; even my right arm strains and twists against its Velcro cuff.
“Whew,” says
Dr. Field finally, “do you need a break?”
“Yes,” I
admit, relaxing back against my chair.
“Would you
like the space heater on?” Dr. Zhou adds, and I look at him gratefully,
suddenly aware that I’m in an uncomfortable state of being both chilled and
sweaty with tension and exertion, and conscious of the strange sensation of the
devices pressing into my shoulder heavily from both sides.
“Yes,
please.”
I hear him flick
the switch on with his foot, and I relax further as the heat washes over me,
drying the sweat on my exposed chest.
“You’re
doing great,” he says, something that I would normally bristle at – I hate
being praised for things that shouldn’t
be difficult – but here, from him, I can’t be irritated about it.
“Thanks,” I
say. “Would you mind moving my arm back to my lap for me?”
He stands up and shifts it carefully for me, and before I realize it I’ve
closed my eyes. Just for half a minute, I
tell myself; I need to compose myself.
“Okay,” I
say, and open my eyes again. “Thanks. What’s next?”
“Next,” Dr.
Field says, “we try the device.”
My heart
skips. Externally, all I do is nod a little bit against my neck brace.
“We’re going
to take a staged approach,” she says, looking to Priya to continue.
Priya
explains, her hands already moving to the computer’s keyboard, “It’ll help you
acclimate, and it’ll tell us how well each part of the program is working for
you. So, we’re going to start by switching on just the first part, the filter.”
“The
clean-up crew?” I suggest.
“Right.” She
smiles. “We’ll need your arm on the table again. Would you like…” she looks to
Dr. Zhou, as if he’s the only one who has permission to touch me.
“Yes
please,” I say, and he leans over again to lift my arm to the tabletop. By my
standards, it’s basically still now, from exhaustion, just lifting once in a
while to knock limply against the table.
“Okay,” says
Priya, “ready? You’re going to feel –”
“What will I
feel?” I say hurriedly, at the same time.
After a
nervous chuckle, she regroups and says, looking embarrassed, “Actually we’ve
been told it’s hard to explain. The range of descriptions we’ve heard has gone
from, um, ‘very quiet’ to ‘alive.’” She pauses to let me think about it. “But you
will definitely feel a bit of electrical current, and the units –” she points
at the devices on my shoulder “— will heat up a little.”
“Uhhh… well,
okay. Shoot, then, I guess.”
She clicks
her mouse, and I brace myself.
There’s a
little electrical zing on both sides
of my shoulder, and a sensation like a trickle of cold water running down the inside of my arm, all the way down to
each of my fingertips. “Huh,” I can’t help saying, and then I feel something
I’ve never felt before.
For the
first time in my waking life, I feel my left arm go still. This is not just a pause, a breath in between one random
gesture and another; it’s really still.
It’s as if someone
has been constantly been playing, during every waking moment of my life, an
annoying radio talk show somewhere in the background, sometimes loud, sometimes
quiet, sometimes even silent for five or ten or fifteen seconds, but the
chattering voices are always, always ready to cut in again, shatter the silence.
I wait. And
I wait. I hear a full minute tick by on the clock on the wall. And my arm
doesn’t move. It doesn’t move.
For the
first time in my life, I feel a sense of control.
When I
realize that, when the thought crystallizes, a bright surge of adrenaline,
endorphins, something, goes straight to
my head, and my vision almost fades out white. I have to catch my breath.
“Matthew?”
Dr. Zhou is saying softly. “What are you feeling?”
I take
another breath. “Control,” I say finally, and blink until I can focus on their
faces again.
They’re all
watching me, Dr. Zhou, Dr. Field, Priya, and Joel. Most of them have one hand
pressed to their mouth, and I have to laugh, embarrassed, giddy.
“You can put
another check in the ‘quiet’ adjective box for me, too,” I add. I take slow
breaths through my nose. I just sit there, feeling, feeding every ounce of
attention into my left arm. It feels calm, ready; I repeat that impression out
loud, too.
After
another moment, it’s as if everyone in the room lets out a collective breath;
we’re ready for what will come next. Dr. Field shifts from foot to foot, links
her hands and stretches them out in front of her. Her eyes glint with
excitement. Dr. Zhou watches me gravely, the side of one hand still pressed
against his mouth. He leans forward slightly.
This time, Dr.
Zhou takes me through the same series of exercises that Dr. Field first asked
of me, to see what I can do under my own power, minus the effects of my
athetoid. Though adrenaline has sent a new jolt of energy through me, my
movements are weak, tentative, uncoordinated. My arm moves limply and mostly
from the shoulder. I’ve never had more occasion to appreciate exactly how
little muscle mass I have, or how unused I am to using my elbow or wrist.
And my
fingers remain loosely curled; I still can’t control them, open or close them;
my brain just can’t see a way to do it. (Can even the second part of Priya’s
program fix that?)
But I can move. I can move – of my own volition. Most of the targets, I hit after only a
couple of tries. And for the first time in my life, every reminder of what I can’t do – it expands, explodes into a
hope of what I could do, if I had the
device, if I had time, if I had practice and physical therapy...
“That was great,” Dr. Zhou says at the end, and he
sits back and runs both of his hands through his hair, the most spontaneous
gesture I’ve seen him make so far. He’s not exactly smiling, but, like Dr.
Field, there’s a light in his eyes.
I say
nothing, still just feeling. I feel
flushed, and my pulse runs quickly and lightly inside of me. I want more.
It can’t be
soon enough that Priya says, “Ready for Phase 2?”
I say
something that people find funny, because they laugh, but I’ve forgotten it as
soon as I say it, because my mind is so bent on what must come next.
Priya turns
back to the computer. I watch her as she types a couple of brief lines into
some kind of terminal window, hits enter a couple of times. That’s all she
does. But she tells me that it’s running, the second part of the program.
I sit and
stare down at my arm, extended palm-up on the tabletop, looking pale and
profoundly unnatural with all of the circles marking it, the thin trailing white
and blue wires. My fingers are loosely curled inwards.
I don’t feel
any different; the devices, heavy and heated on my shoulder, don’t feel any
different. There’s no new jolt of electrical sensation; my arm doesn’t quiver
with new energy.
But I sit
and think about what it would be like to open my hand. I think about the
thousand, thousand times that I’ve watched other people do it – gesturing,
reaching, waving, stretching, patting, resting – and I think about what it
might feel like to do it.
And then I
do: I do open my hand. I watch as my fingers stretch out, all together,
coordinated, smooth. I let them stay like that for a few seconds, feeling the
subtle tension running up from the tendons in my wrist out through the core of
each finger.
I watch as
they – I – close my fingers again, bring them in slowly to make a fist. I watch
as my thumb pulls in alongside those fingers, wraps around them, because I want
it to.
I’ve been
holding it back for what must be the past hour now, but that, finally, is when
I start crying.
