You wouldn’t expect it of the child whose brain tumor treatments started at age three and ended in high school, but invisibility is my particular challenge in my immediate family. The family of my birth is a special-needs family, in which my younger brother’s autism and my father’s deafness eclipsed a case like mine. Outside of appointments and operations, my diagnoses (oligodendroglioma, and later, astrocytoma) could be deemed inactive because most of my seizures were localized in my leg and rarely ramped up to grand mal. I cannot recall being described as epileptic, though such a label is accurate. During my second brain operation, lasers sliced through my neurons to access malignant tumor cells; I responded with speech to verbal commands from my surgeons, who reduced my anesthesia in order to communicate with me, to better position their tools in my brain. Only recently have I started to understand the impact of this radical cure on my body. My once-paralyzed left side remains weaker than my right. My balance wavers. My proprioception, the sense of my body in space, never really came back. For much of the last two decades, this state was characterized to me as temporary, which meant any evident flaws were my own. If I sound angry now, that’s not inaccurate; it also doesn’t negate the utility of denial when it comes to realities of the body. Denial is incredibly useful.
The man we sometimes call our “family neurosurgeon” performed two procedures on my father’s eighth cranial nerves. The less advanced techniques led to more predictable results, a simple trade: the acoustic neuromas were removed, at the cost (sudden in one ear, more gradual in the other) of his ability to hear. Yet as a social rather than an audiological phenomenon, my father’s deafness has stretched over thirty years of slow disappearance. Since I became a parent four years ago, it seems every visit my mother says, “He’s really deaf now. We’ve got to start signing with him.” Whenever I hear that, I wonder, but can’t ask: What’s clear to her now that wasn’t clear five, or twenty, years ago? It’s hard to see your own life clearly, and I don’t know that I see mine clearly, but I know my desire: to remain visible in the face of erasure.
A decade or more since my last visit to the Brain Tumor Clinic at the Dana-Farber Cancer Institute, I have outgrown seizures like a too-small pair of shoes. Little evidence remains of my childhood spent in what the disabled poet and editor Sheila Black has called “hospital homeland.” After a treatment minimized her condition’s physical visibility, Black recalled feeling that “I missed the shape that I had.” I can’t say I miss malignant brain tumors. I don’t, and who would? At the same time, my earliest sense of my own shape was connected to illness; my later senses of shape were defined by my non-illness, my non-disability, relative both to my prior self and the other men in my family. Sick, then not; sick again, then not again. Lights on, lights off. When they’re off, best not to think about what’s in the dark. When they’re on, let’s all agree there’s no such thing as night.
The blinders of this binary pose a problem for sick and disabled people. The poet Jillian Weise writes that we “have been deleted for centuries, and in the movies, you will often see us go on a long, fruitful journey, only to delete ourselves in the end. But anyone with a hard drive can tell you: Even when you delete something, it is not really gone.” This erasure of that fifteen year period of my life is disorienting, and as I make a family of my own, I wonder if restoring that period, or at least gaining a clearer sense of it, means I can make the invisible seen.
By the year my first child was born, I was a working interpreter, a line of work where a kind of invisibility is the default position, though we don’t always stay there, and though this theoretical removal is, at best, a construction. It feels foolish to say it, but I remember a time when I wanted nothing more than to help make my father more visible. I knew American Sign Language, the language we’d learned for him—both our family’s version of the language, and the version of ASL that other, actually Deaf people understood. During interpreter school, I learned the strategy of moving vertically through a hierarchy of information, organizing goals and main points at the top with sub-points and minor details at the bottom. (This was the Gish model of language processing, which functions among interpreters as a transitive verb—to Gish up, to Gish down).
I learned to describe and categorize the nexus of formality and context in an exchange between people, a complex concept that interpreters call a “register.” There are five—frozen, formal, consultative, social, and intimate—but a single exchange needn’t stay in a single register and, in practice, rarely does. Consider a compliment from a cashier to a customer at a drugstore. The cashier and the customer are engaged in the level of communication that you could carelessly call a social script, a kind of language a lazy interpreter might almost call nearly a frozen register, as socio-linguistically rigid as a waiter coming to a table, if not quite as inflexible as a student saying “The Pledge of Allegiance.” Interpreters will often find themselves working in consultative—doctor’s appointments, classrooms—in which one person (almost always the Deaf consumer) has less expertise and fewer ‘lines’ than the hearing ‘expert.’ My father often flips that script, monologuing about library books he has read, in much the same way he would sit at our kitchen table and explain to me in exhaustive detail the Pythagorean theorem, or the process of absolute and relative dating, aware that he was teaching, unaware of whether or not I was learning.
Since becoming a parent, I’m more sensitive to and aware of how my father and I communicate. Our communication is a model for my son, and the unconscious default for the patterns my son and I might adopt. I am starting to understand that though my father’s access to nuance is limited—to him, what a stranger behind a drugstore counter could mean by a compliment isn’t accessible. This is not a total loss to him, but rather a state to which he’s become comfortably accustomed. He’s said so himself. That sort of frankness makes me long for dialogue about the experience of parenting. Outside of what I glean from friends and popular culture, I have no sense of what it means to grow up in an immediate family unshaped by disability and chronic illness. My father did and my children appear to be, so I may need that perspective soon. Improved communication requires a back-and-forth that’s difficult, that requires me to be patient and him to be uncomfortable. His hearing loss saves us from the intricacy of intimacy, and deep down, maybe that’s something neither of us minds.
I can tell you almost exactly when I began to mind this avoidance of intimacy, when the reconstruction of this messy family story first became a project I couldn’t put down. It’s not long after we become pregnant with our second child. We find a new apartment, pack the old one, and so maybe it’s no surprise to find myself thinking constantly in terms of erasure and restoration. One day, when I’m on break from packing and cleaning, I go out for a stroll with the boy and the dog. It’s a winter day in Washington Heights, warm enough for construction work, a secondhand second-trimester Saturday. Our apartment is in boxes. We’ll move in a week or so nearly a mile away, from a small, overheated one-bedroom to a beautiful, light-drenched two-bedroom on a hilly, desolate block. The two of us—my wife Seema and I—agree that the fourth through sixth months of gestation are our favorite triad in all of human reproduction, the one during which the certainty of a pregnancy has cemented, offering the foundation to support the delicate edifice of excitement about a person who does not, yet, inarguably exist. Said proto-person is not visible, at least not without technology and a doctor to explain it—the way a doctor once explained the cell-by-cell growth in my own body. These new cells are invisible, except in the mark they make on the body carrying them.
It is a blue-sky, no-mitten, coat-open, wind-free day, a day that enables a willed ignorance of what’s due any week now for Seema: the bloated discomfort of her late-month feet; the impossibility of her corralling a robust toddler while waddling; the slog of grading her students’ essays against the inertia of anticipation. When spring begins in earnest, we’ll face the inevitable only-way-out of dilation and effacement, contractions and the measured space between them, of active labor and transition, of crowning and the last great releases of delivery. On this balmy day, walking south on Fort Washington Avenue past the A train and our favorite playground, my birth-partner memories of witnessing childbirth filter through awestruck admiration of the act’s physical force. Her new body has helped me understand how my encounters with hospitals had really created a new body of my own, one that was not—counter to what I’d been told—temporary. Like Seema’s pre-baby body, my pre-operation body was never coming back, not any more than the teenage body from which the cells had been removed. It would not be restored. It had been erased. For a long time I’d willed myself from seeing its replacement as its newest form, learning well the lie that my body was a photograph, and the latest version just the same image viewed through a filter.
Another filter, the birth partner one, is patchy, overlaid by the present reality of the toddler the baby became. The new, tiny human of memory has long disappeared, evolved into the dense mass of boy that my body strolls forward. Yes, all that labor will return, but later, and it is work I can only, at my best, support. Even the hospital homeland picture is overlaid now with complicated images as witness to one and, soon, a second labor. The white walls of exam rooms mix with the wide windows of a birthing suite, twelve floors above northern Manhattan. It’s not mine but it’s partly mine, not like the hospitals of my childhood, which despite the presence of my whole family, I pretended full ownership of. (From deep within a cavernous 1980s CT scanner, my three-year-old self screeches, “ALL MINE!”). I push our toddler in his wide stroller with two hands and a bent back, looping the dog’s leash around my right wrist, the wrist I can trust.
We turn east, away from the Hudson River and the George Washington Bridge, toward the big park that, outside of baseball season, is lightly used. There, we’ll run off-leash and out-of-stroller across fallow outfields overlooking the Harlem River and Lincoln Hospital, stones’ throws from the High Bridge Water Tower and the Cross-Bronx Expressway. The walk there and back is often calm, meditative—my son taking in his world, me surrounded by enough quiet and stillness to be able to reflect on it. At home, Seema hums the nine-month-long kirtan she sings for the second time in less than two years. It is a song in another language, from a tradition she knows and I don’t. That song can’t be readily arranged for the flat instrument of my body. It is a melody I cannot carry. Still, I try to harmonize.
Approaching Broadway, my son, my dog, and I spy the construction underway on a block-long section of street that’s irregularly closed to host an open-air market. Locally known as Plaza of the Americas, the construction is taking the idea of a plaza set among the facts of a loading area and a closed cross-street, and replacing it with the literal bricks and mortar of an actual one. I think of Seema: home, resting in an unzipped baggy fleece and a loose ponytail, eating an egg-and-toast on our couch, brushing a crumb from the chubby, brown cheeks that are the same as our son’s. At a level invisible to my eye, the idea of a second child is, cell-by-cell, becoming the fact of one. As a consequence of this fast- forming fact, we’ll erase ourselves from the space we’ve called our home for three years, as renters do. We’ll paint walls white, we’ll wash floors, we’ll leave behind the keys and after all that, we won’t exist.
My son, my dog, and I reach the corner, waiting for the light across from the United Palace Theater, our best viewpoint for plaza construction. My son stares rapturously at the dance of the digger and pipe. A backhoe pivots from the edge of a pit filled with rubble, filling the bed of a dump truck with jagged slabs of asphalt. A forklift performs three-point turns, moving pallets of—what, dry concrete?—east to west across the worksite. Men pair off beside a jackhammer, preparing to open a section of sidewalk abutting the Bravo supermarket. The rhythms are fascinating, foreign, and I don’t know how to make sense of them. I narrate the scene for my son, molding simple sentences. The backhoe scoops dirt into the truckbed. The forklift raises pallets using hydraulics—while doing my best to avoid saying anything counterfactual or incorrect. I am as far up on Gish as I can go. How high would I need to go to stay accurate with construction equipment, how many words could I string together without producing language that would expose me as a fool to an eavesdropper who knows better? As much as my son was my audience in that moment, in some corner of my mind, so was someone—a man—with all the carpentry skills of my father, and the ears to overhear my lack of the same.
I suppose this betrays a certain anxiety, reader, enough of one that my dog, Butte, picked up on it more quickly than even a child would. Dogs absorb the tics of their people, and, mirror that she is, she has retained and deepened an incurable anxiousness. She is fearful of plastic bags and umbrellas, and is at her most calm at home, under the couch or the crib. As the three of us watch a backhoe plant its stabilizer in loose gravel, her shoulder muscles flex. Adopted at 10-months-old, one freezing January, Butte found her third and final family in us. When we first had her, we let her run off-leash in a nearby park, in a pack of dogs owned by neighbors that numbered sometimes up to a dozen. Butte always returned when called. Seema and I felt smug at our ability to effortlessly train her, attributing it to the boundary-setting skills of people who’d worked in tough schools for five years. Then another dog owner, one who worked as a trainer, said Butte was just responding to our voices, returning in our direction out of primal fear. “Butte’s afraid if she doesn’t, you’ll leave her,” she said. She responded to our voices as a reaction to her history, to the trauma written in her body, rather than anything about the language our voices had chosen.
Approaching Amsterdam, I search for a curb cut, find one down the block, past an auto parts store with tires stacked in shaky columns out front. A wide-faced man in his forties approaches, rail thin with close-cut hair bared to the blue morning. He carries a brand new paint roller from a nearby hardware store. Passing us, he nods at my son as if they both just made varsity. In a walk full of gestures—tense haunches, waves forward, bent backs—this nod pulls me back to the world of human interaction, away from the plaza construction workers’ complex waves indicating ‘come forward’, ‘go backward’, ‘stop.’ At the man’s nod, it occurs to me that this strain in their voices belies the awareness that their permit to work the weekend would not extend into Sunday, when the United Palace hosts huge church services. Certain work could not be left undone. Loose ends must be tied.
Something I’ve learned in my work as an interpreter, and as a grown child of an aging father who has been deaf for most of my memory, is that when it comes to communication, tying loose ends is critical. Yet the time and energy needed to secure what is unmoored is finite. I had once hoped that a grandchild would accelerate or intensify my father’s desire to accept communication. It hasn’t; very little about our communication has become clearer. This stranger’s nod shakes me, in part because it communicated so clearly, cutting through what I perceived as a language barrier. And the paint roller, beside the stacks of tires, reminds me of the establishment where my Spanish is useless. My own father worked as a carpenter when I was my son’s age. Yet for me, installing a pull-shade marks the upper level of my ability to sequence, process, and balance while turning a screw. This is the other piece of my division in half: when called upon to do things in a certain order, simple tasks like “Assemble IKEA furniture” or “Assume tree pose,” my brain works fine at first and then, the synapses short circuit. So when the man passed me, nodding, the gesture summoned in me all that ineptness, especially that un-male-ness.
“Got your hands full,” he ventures, pointing with his paint roller. In a place with more witnesses, a place where I’d think more immediately of the monumental work my wife has before her, I’d demur, deflect the praise, but the only adults here are he and I, and so I give a close-mouthed smile and tilt my head. He grins and adds, “Props,” and here I show my terrible crooked teeth, my gums pushed high by a half-lifetime of anti-seizure medication, the smile I rarely show strangers or cameras: a real one.
“Props” is clearly a compliment, it feels good, and somehow, earned. Yet uninvited judgments, even when positive, at other times have caused me to bristle: I push my son in his stroller while he eats a banana, and a guy in his twenties says, “You’re a good father, man.” My favorite toddler-dance teacher tells me after class, “You do a great job.” There’s the woman who approaches my son and I in Fort Tryon Park and recalls raising two kids in this neighborhood, and remarks, “You’re doing incredible work.” The vagueness of these compliments raises my suspicion, if only because after dance class my son will run down the hallway when I take my eyes off him, and in the park the riding lawnmower has both wheels and sharp blades, and any parent knows that only a fool gives that second banana to a child still in diapers. I want to know more, to understand what these strangers mean, without ungratefully fishing for further compliments or undercutting the original comment by switching my attention away from the kid himself. My suspicion around compliments begins in my family of birth, with its special-needs rules, where any accomplishment of mine was attributed to my natural talent, my relative genius; any failure, to my own failure to tap said talents, never mind luck and privilege. In both cases the standard was my younger brother, who made the most of what he had, as the story went. My reception to compliments isn’t as important, though, as their function in my community, their place in perpetuating the underlying social dynamics organizing cramped, crowded community life in New York.
The passing pleasantry—“Props,” among them—is as useful to urban life as the sidewalk. In Life and Death of Great American Cities, urbanist Jane Jacobs identifies three main uses of the urban sidewalk: safety; to bring people into contact, especially children; and through contact and safety, the building of trust and a sense of responsibility for each other. Thinking back to the “Props” comment, from a stranger on a sidewalk, I find another meaning, one I understood once we moved to the next apartment, on a block where any adult will keep an eye on the tricycle tumbling down St. Nicholas Avenue or the toddler running too far from the playground and too close to the street, while the parent changes a sibling’s diaper. The social contract is strong, and its binding begins with a simple compliment. On this block, a compliment was an opening, a chance to connect, not just to confirm. It was a ‘prop,’ in that it was a makeshift support to something hardy and essential that just happens to be, in its earliest stages, delicate and intricate and precariously built.
After my daughter is born, not long before we move to our third and current apartment, I am out with her and her brother. She’s six months old, in a sling on my chest; he’s just past two, in our stroller. They’re awake; I’m exhausted. We’re exiting an elevator to the subway platform at 59th Street, taking the long way back uptown—the all-elevator route. I push the stroller with one hand, hold her head still with the other, and keep her bottle steady using my mouth while grunting an affirmation when my son squeals, “Daddy, train is coming!” We tread water against the current of people moving in and out of the doors. An exiting passenger, a young man, apprises me and says, “That’s masterful.” On the train, doors closing, I take the bottle in one hand and a pole in the other. With my suddenly free mouth, I mumble, “Damn right it is.”
It’s after this subway ride, and in this new apartment, that on the best mornings, I can start to hear a compliment for what it is. These best mornings, they’re the ones where I lock the door while Seema calls the elevator. Baby on my chest, I stroll my son down the hall, where Seema checks his stroller straps while I close my cardigan around my daughter’s back, tucking her toes inside its right and left halves. I pass my son his Boston Red Sox hat, which he pulls snugly over his eyes. The elevator dings, and its door stutters open. On these best mornings, I’m able to follow my family out the building, ready to listen.
Part of that listening is the acceptance that I have certainly forgotten something—my brain and body are such that a Thing of Importance to Our Day Together needs a memorable shape and a permanent place in order to be represented in my memory. I always forget something, and already I have begun to explain this to my son (“Remind Daddy that his Metrocard is between his Driving Card and his Money Card”). I prefer this approach to my father’s approach, which relies on willed ignorance. His implausible denial of the way deafness impacts his closest relationships has lasted decades. No matter— physical difference doesn’t mind being ignored; ignored, it just grows over time, on a schedule of its own. Ignored, it becomes as real and irreversible as the rise in sea level.
Though he’s the reason I learned sign language to begin with—though he was, for years, my first and only teacher—my father does not sign with his grandson, even if my son signs with him. To my father, there’s no reason to sign with my son. He says, or my mother will say for him, It’s painful, ‘it’ being deafness. By now, in his third decade of deafness, communication is about the transmission of data, period. No exchange shows this more than one that happened during a recent visit. This dialogue lives deep in the intimate register, where the mystery of what is really meant braids inextricably with the most private selves of the people trying, or not trying, to talk with each other.
Here’s what happened: My son had been running from room to room with a dull, broken-tipped colored pencil, which he had been using to “screw in” a series of objects. I was in one bedroom with his sister, having already had my shoes screwed to the floor. Our apartment is small, and any conversation is audible to anyone—anyone, obviously, who can hear, a group that did not include my father, surrounded by my wife and mother, who were talking as always about education. My son had turned the powers of his colored pencil to his grandfather, who was seated on the couch, filling in a sketch of a subway car with watercolors mixed in a yogurt top.
“I want to screw in your knees, because I love you.” He said this once, twice, three times, in his high, heartbreaking voice, which finds vowels and stretches them like the balls of thrown pizza dough he can watch transform for as long as it takes to bake our Friday cheese pie.
My mother finally told my father, “Just let him do it.” I only heard it from the other room.
My father didn’t understand but he let the child turn the pencil on his pants anyway. My son is his grandson. They speak to each other in English. My son has a habit, now, of touching adults’ cheeks and turning their heads to his before he speaks. He does this when what he has to say is vital. I can’t say if he did this the day he screwed in my father’s knees. I wasn’t in the room. I had my daughter to watch. Or I couldn’t bear to enter. My shoes were screwed to the floor.
My mother told her husband, “Just let him do it.” When she said this, she didn’t sign it. She didn’t speak-and-sign. She just used spoken English with a man who hasn’t comprehended speech in our current century. The reason my father always gives for giving up signing: “Your mother got tired of being corrected.” There was a time, when I was most enthusiastic about the way signing would save my family, that I would interpret to my father the English my mother spoke. It took me years to see that as a charade.
“Later,” I heard her say to him. “I’ll explain later.”
When I think about my son’s request—“I want to screw in your knees”—I notice an element of fixing. My child is using the language class my father most connects with, that of carpentry, of tools, of manual work if not manual communication. Of course, fixing is what’s done to something broken, and it’s no secret to my son that his grandfather’s ears don’t work. Fixing, though, can mean not just the opposite of breaking, but the opposite of evolving, of moving, of changing—to stay fixed, to be still. Knees were made to bend, after all. If they are fixed, they are broken. My son wants his grandfather to stay right there, both exactly as he is and in a way that he determines corrected. In a way, that’s what I’ve always wanted, too.
My mother’s reply—“I’ll explain later”—haunts me differently. It’s a kinder corollary to a reply I used when I still lived at home when signing broke down between us and English couldn’t convey an idea. In frustration, I’d shake my head and say, “Never mind.”
Both replies take the message out of its context, negating its importance to that present moment between people. “Never mind” erases the person’s presence of the person who can’t access spoken English; “I’ll explain later” abolishes their agency. Both rip the intimacy out of what’s being said, diminishing communication to data. He rarely says so anymore, but when I was in high school, my father told me he hated “Never mind.” At least then, there was a point when he refused to make talking mere information. It’s hard to say if that’s changed.
This essay, the work I do, my impulse to explain as much to my son and my daughter as I can in a moment—these are all forms of atonement for my refusal to engage in that long-ago, almost-certainly closed chance for intimacy. I think of my son’s reasoning, clear and simple: I want to screw in your knees because I love you. Which of course is why I learned the language at all, why I continued to study it, why I taught it to my child—because of that phrase, so hard to say, to that person whose knees my son screwed in. Because I love you.
I’ve long thought of my communication failures with my father as something limited to signing and ASL, and this sense follows me to every job I work. What I bring to each assignment I take as an interpreter is not just my fluency and my knowledge, my ethics and my sense of community. What I bring to each assignment is baggage—but not the baggage I’ve long thought it was, of my father’s failure to accept the language or even to accept his deafness. Rather, it’s the baggage of my earlier refusal of the intimacy made possible by making the full effort to communicate clearly—regardless of form—with someone who needs patience, time, repetition, adaptation.
What I fight each day, in more sentences than I can count, in language of my own composition or rendered in translation by or for another, is my own tragic but reversible failure, to date, to hold steady a crucial belief. That is, after decades of trying, I still struggle to hold with both hands the basic conviction that my own language can survive the need to be said more than once. So I say it now: my language does not diminish when I say it again, unless I diminish it myself. With my next sentence, should it need repetition, I will ensure that its second coming is slower, louder, more clear than the original.