by Ed Finn
We pull into the school parking lot. Just as we step into the milling crowd the pasty kid whispers in my ear once more. In my mind, I turn and knee him in the crotch, leaving him groaning, but really, I slide through the crowd fast as a pixel trace and enter the long, low building: East Side High.
Jarring sounds: slamming locker doors, kids shouting. Every room is full of different people at different times of the day. A gray window of dread falls between me and everything around me. I don’t know what’s worse—spending every day with the same unpleasant kids or being constantly among strangers. No one stops the kids from being mean. It’s too much work. I’m in the principal’s office a lot, because of my anger issues, but it’s restful. Mr. Beadley is a kind, quiet man who lets me listen to music and chill.
“The model of a public school has not changed in over a hundred years.” Right. I believe it. Mine was built in the 1960s and is rectangular, full of rectangular rooms. I am really interested in learning Thai, because I have a cousin who speaks Thai and English and I’m jealous, but they told me that I could only learn Spanish or Latin. I am in remedial math and reading, which is why Alex always calls me Loser and says I should just give up and flip burgers, but I don’t want to. It’s like there’s a beautiful picture in my head of me reading a book and using all those weird symbols I sometimes glimpse in my math program. I’m up on a high mountain peak, where the wind blows hard and the air is clear and I can see forever, but I can’t even find the beginning of the trail that leads to the top. I work hard. I just don’t get it, despite my meds. I love my special teachers, but all day I’m yanked from class to class, from world to world, expected to keep track of multiple fragments of tenth-hand information. I have a great memory, and I know I have good questions, but when I ask them, the teachers say we all have to get through the day’s lessons and don’t have much time, and I suspect that they don’t even know the answer or how to find it or how to even think about it. Being in school is like being on a conveyor belt in a cafeteria. I’m whisked past smells that might be tantalizing as new-baked bread or as sour as overcooked cabbage, but, whether it’s good or bad, there’s never enough time for me to put food on my plate and eat it. Maybe I can, they tell me, sometime in the future, if I play my cards right, the cards that everyone assures me exist but that I have never seen. What cards?
My first class is Math for Idiots. I sit at the back of the room, so I can paint on my tablet, but the teacher looks at me from the front of the room, where she’s monitoring everyone, and the math program breaks through my fix and takes over. “Melody, here are six groups of two ducks. Write a multiplication problem that will tell you how many ducks there are.” The ducks are swimming in a pond, but they may as well be flying over Antarctica. I try to touch one with my finger and stop it from moving, but my finger hits the empty screen. I try to return to my art program. “Melody,” says a male voice behind me and I look up. It is Mr. Beadley. “Come to my office, please.”
I am very surprised to see my parents there, my mother in an impeccable suit and my dad in his manager’s uniform. I can’t believe that they both took time off work. Something must be terribly wrong.
We sit around a big round table like grown-ups and Mr. Beadley says, “This is a very sensitive issue, and I apologize if I am out of bounds, but I have been looking over some data and I believe that Melody is the perfect candidate for the OPEN ROAD project at NIH. I would like to recommend her as a participant.”
“You mean she could be an experiment. Like a lab rat,” says my mother. She looks tired, as usual; her dark brown hair curves perfectly around her chin and her mouth is a thin line.
“She would be part of an experiment, yes, but let me give you my thoughts. I am probably the only person who has observed her steadily over the years. I have all her records here; I’ve printed them out for you.” He kindly gives us all a copy. I catch a few words in mine before they dance away, but I know what the evidence shows: I’m a mess. This is, basically, my picture: I am in seventh grade and cannot read, have no symbolic numeracy skills, and can’t write worth beans. I can talk, though. That’s something, isn’t it? A program changes my spoken words to writing. What more do they want?
“She is gifted in several areas, as you can see,” says the ever-kind Mr. Beadley.
My mother presses her lips together more tightly, which means, none that matter. She bows her head and flips the pages.
My father says, “We know she has challenges. What kind of experiment are you talking about?”
THE NEXT MORNING DAD and I are in a beautiful glass building in a room looking out over the National Institutes of Health campus. Dr. Campbell, a research scientist with long red hair, explains to us that I probably have an unusual brain that keeps me from being able to focus. I can’t correctly process what I see and hear, or organize and use that information. She says they might have a cure. They might be able to tweak with my brain, make it like the brains of everyone around me.
Might. Still, my heart beats faster.
“We are actually in the last stages of our research, and we are getting ready to put this through the FDA approval process. This process has been approved and used in Europe and other countries for the last six months. It’s called OPEN. Operational, Procedural, and Educational Neuroplasticity. Perhaps you’ve heard of it?”
“I don’t know,” says Dad. “Maybe on the news?”
I ask, “What is it?”
“I will show you some pictures. Here is a picture of a normal brain in a functional MRI machine. A ten-year-old boy whose brain is normal—that is, pretty much the same as 90 percent of all brains—is reading silently. In this one, the boy is reading out loud. See how these regions light up?” She defined the different areas—Wernicke’s, Broca’s, the motor cortex, and others—and explained what they did.
“This is an image of a dyslexic boy trying to perform the same task. And here are images of that same dyslexic boy who was given an earlier generation of the therapies we propose to administer to you, if you qualify, and if you wish.”
It gives me a simple picture: parts of my brain are not connecting to other parts the way most people’s brains do.
And shows me that there is a way to fix it.
My father says, “There are many, many creative people who are dyslexic. Steven Spielberg . . .”
You, I suddenly think, surprised by the word as it pops into my mind and then understanding its truth as if I had snapped a puzzle piece into place. You, and me. Maybe Alex.
“Dyslexia is a blanket word that describes a very broad spectrum of disabilities. Melody’s tests show that she has all the symptoms of dyslexia and dyscalculia, which we can confirm or discard as a diagnosis with fMRI studies. We are now able to break these challenges down into more finely defined pictures. Reading takes place in different parts of the brain; if these locations do not connect, it is difficult to read. When pathways between these areas are naturally lacking, they can be developed through genetic and bionan interventions, combined with hands-on exercises. Together the eyes, the hands, and the brain build pathways. We predict that by using OPEN, many people who now have trouble reading can master the processing skills from which reading springs. There is nothing wrong with these people—they are just different. If most brains were like this boy’s brain, we would all be communicating in different ways, and I would be the odd person out.”
She looks at my father. “I know it may be difficult to come to terms with this, but the way your daughter processes information will make it hard for her to do what she wants to do. She may indeed develop creative responses and strategies, but why deny her the opportunity to communicate with the rest of society? You can find hundreds of fascinating and successful people who were and are, supposedly, dyslexic, but you will not hear about the billions of other dyslexics who were not able to overcome their problems despite all their truly remarkable creative ways of dealing with it.”
My father says, “Neurodiverse individuals make
important contributions to humanity. Think of Darwin. Leonardo da Vinci. Einstein. Winston—”
I’m looking at the pictures of the brains. You can see the difference. My brain is “before.”
I interrupt. “I want my brain to connect.”
Dad becomes agitated, urgent. “You’re a creative person, Melody. Maybe a genius! You’ve won art awards—you can maybe get scholarships. You don’t have to be the same as everyone! You can be unique!”
“I will always be unique,” I shout, though I have no idea why I believe this. “The only thing I’ll lose is being so miserable!” He looks very sad at that. I lean over and hug him. “It’s okay, Dad, it’s okay. I love being able to paint. I always will. I want to know how to read, too.”
His arms tighten around me. He pats my back. I hear him swallow hard. “Do it, then.”
Dr. Campbell nods. “Good. It is up to your parents to agree to this, and I want all of you to know everything there is to know. I’m sorry your mother couldn’t come.”
“She had to work. She already took one day off.”
“I will get in touch with her and discuss any questions she might have.”
“She already said yes,” says Dad.
“Still, I need to engage with her. This is a family endeavor.”
I ENJOY BEING IN the Connectome MRI, which maps my brain and the changes as I perform tasks on a very fine level. I am safe: no one can bully me. I can relax completely and respond to questions knowing that I will not be judged harshly for wrong answers: I’m giving information that will help heal me. Yes, my father keeps telling me that there is nothing wrong, and that I don’t need healing, so I change that word to enhance and somehow it makes him happy.
I love the deep, harsh sounds the machine makes; the odd rhythms; the silences. They’re like music for me. I do some research on how the machine works and why it makes these sounds, using videos, and realize: soon, when I can read, I will be able to take in information a lot faster than I can when I’m listening to someone talk. I’m thrilled!
After the fMRI—which, I learn, is by now almost primitive—I move through many more advanced ways of looking at my brain. The data, rendered in pictures, in sounds, in graphs, astound me: I’m looking at myself. The tests finely target my learning challenges and their causes.
I return to school while an international team, a keen and fascinating group of people, the members of which I meet online, readies my therapies. Soon, they say, studies like the one that I am in will make this process swift. One man envisions international kiosks in which people will be evaluated and receive therapies in a matter of minutes.
After a month, they call us back with the assembled information. We meet with Dr. Campbell and some of the team in person: a neurogeneticist, a nanobiologist, and two educators, all from OPEN ROAD. It’s fascinating to see how information moves through my brain, and the model of how the pathways will grow and strengthen.
With excitement and pride, the team shows me around the Neuroplasticity Lab, equipped with all kinds of specially developed hands-on equipment that seems oddly simple—large sandpaper letters glued on boards, for instance—but intelligent. When I traced the W, for instance, it says, “Wah. As in white, water, willow . . .” I remember my mother doing those things long ago, and, as then, the associations fly out of my head as soon as I stop hearing them. In a cabinet hang chains of small, grouped colored beads to show what multiplication is. The five-bead chain, for instance, has five groups of five beads each, and when you fold it up it makes a square of twenty-five beads. That is weird. I never knew what the word squared meant before. Just being able to make a square with my hands makes me understand it. There are also little arrows with numbers on them that speak their names when touched—5, 10, 15, 20, and 25—but I can’t read them.
The educators have developed a personalized program for a computer that is kind of like a brain prosthetic/stimulator, which they give me. It is a portable analog of the physical lab and projects 3-D images I can move with special gloves. They watch me put it through its paces. I count the five-square bead chain and when I say “five,” the number 5 manifests next to the fifth bead. I forget what it looks like as soon as the projections vanish, but it’s cool.
I pick up objects—a sphere, a cube, a dodecahedron—and take them apart in various ways, reassemble them, play with them in any way I choose, and as I do so, verbal and the corresponding written information—usually equations—appear in the air. I can move those numbers around, too, and fly through different kinds of mathematics that explain, in their various ways, what I am doing and seeing.
They confer off to one side, heads bowed, come back with smiles and say that they will tweak and continue to tweak. They are as exuberant as kids let loose on a playground. I can almost see them jumping up and down and clapping their hands.
ON THE MORNING I am to get the shot containing the nanobots and genetic information that will bestow upon me a finely calibrated neuroplasticity for a limited time, I wake up sweating. Do I really want to go through with this? Will I really still be myself? Will I die? They told me that developing leukemia from genetic therapies is a thing of the past, but they are not superheroes, just humans. Will it go wrong and make me worse?
Perhaps the bravest and at the same time the most stupid thing I ever did was get into the car with my dad. On the way to NIH, we listen to a pep talk from a boy in Brussels and a girl in Amsterdam and another girl in Libya who have taken the shot. They are all ecstatic. I asked for negative reports too, so I listen to one girl from Rio who says it did nothing, and to parents who blamed their boy’s subsequent tic on it. My father, who is driving, holds my hand the entire time. He tells me repeatedly that I can change my mind.
We enter a cubicle and Dr. Campbell swipes my arm with alcohol, talking all the time in a low, soothing voice. “Someday soon this will be something you can drink. We’re working on developing a reset, or, really, a going-forward process that would restore one’s previous mental environment if the client prefers it. Some people who are blind and gain vision, or who are deaf and gain hearing capability, have a difficult time learning how to process that new information and are unhappy. We want to make everything as smooth as possible for you.”
“Science,” murmurs my father, as the needle goes in.
The injection is very, very expensive—so expensive that few people in the world can afford it, so radical that use of the individually tailored cocktail is illegal in much of the world, and so controversial that I have been afforded—quite annoyingly to my brothers in particular, whose shady activities, I discovered later, ceased abruptly—round-the-clock security.
“Now,” says Dr. Campbell, “I’d like you to meet Glinda. She had the shot a few weeks ago. She’ll be your Mentor.” She ushers me into the lab.
Maybe it’s my imagination, but everything seems brighter, more sharply defined. “I feel a bit nauseated,” I say, and Dr. Campbell gets me a ginger ale and some crackers. I am opening the package when an African American girl about my size bounces into view.
“Hi! I’m Glinda!”
She sticks out her hand and I shake it. “Nice to meet you. I’m Melody.”
“Okay!” Her eyes are merry and she has a big smile on her face. “I had my shot about a month ago and I’m going to be your guide here. Yeah, I felt kind of woozy for an hour or so. Want to lie down?”
I finish my crackers. “No, I’m fine. So what’s this over here?”
“You left-handed?”
I nod.
“Okay, get on your gloves and let’s get started.” She notices me staring at her long dreads.
“Cool beads.”
“Step back,” she says, and gives her head a shake. Her dreads swirl; the beads clack together in a kind of music. “Hair as a weapon. Once people get a smack of beads in their face, they don’t bother me. Okay. All these exercises look simple, but you know they’re tough. And even with all the fancy help, English is a joke. It doesn’t make
any sense. Well, it makes sense sometimes, and that tricks you into thinking it makes sense all the time. You just have to learn a whole lot of rules and, sometimes, just the way a bunch of words look. It’s a lot easier in phonetic languages, like Italian. You’re not stupid—English is. What do you do?”
I know immediately what she means. “I paint.”
“I play the saxophone. Now I can actually read music! I learned how to play by ear, and I’m an ace at memorizing—y’know?—but wow! Now I can play what I see on the page. When I see a score, I hear it in my head. It’s like magic.”
The first thing I have to do, she tells me, is connect each letter to a sound and to a motion. “Making the motion with your hand, or your finger, wires it into the brain.” She laughs. “Not that there are wires in your brain.”
“It seems more like a light show.”
We even sleep in the lab—there are cozy little bedrooms there—so we won’t miss a second of our enhanced developmental time. Grad students drift around, taking notes and making videos, and everything I do is recorded, somehow, by a light cap that I wear with sensors in it. I forget about it after the first day. Being able to concentrate is such a change that all distractions vanish. I’m climbing a trail up a steep, windy ridge, the trailhead far below me.
I dream the things I’m learning—sounds, pictures—and sometimes I wake at night, remember where I am, dash out, and start where I’d left off. I’m beginning to be able to sort out letters, because they stay solid, but also because I’m doing a lot of tracing work with my fingers and just simple writing of sounds on paper. “Ssss,” I say, as I write a sinuous s over a dotted line. There is a set of letters in a partitioned box, and when I pick one up it says its sound, “mmm,” and I begin playing with them—there is no other word for I’m doing; it is not work; and soon I’m putting together words that sing at me—“ffaassst!” It’s crazy. I’m doing preschool things, and I’m thirteen. But it’s the most fun I’ve ever had.