Imagine Yourself a Strained Body Breaking to Recover

If anyone becomes unmoored, it will be my brother. He is the one with Down syndrome. He is the one who relies on the predictabilities of a calendar: appointments, commitments, promises. If the sudden evaporation of routine leaves my mother and me in a workless void, imagine what it will do to him. The thought acquires language on the road. I am leaving my one-bedroom apartment in New York to shelter with my brother and mother in the woods of central Massachusetts. I am floating down an open, empty stretch of I-95, listening to the stock market crash, trying to figure out what I am doing—why I am going home—to take care of whom. It is the twelfth of March, and I have decided that I am coming back for my brother.

*     *     *

Andrew is thirty-eight, an adult who struggles to live with the constraints of his disability and dependence. Though he takes care of himself in certain ways (he brushes his own teeth and picks out his own clothes), his existence is largely a supervised one. He needs help to prepare anything but cereal or yogurt in the morning; to shave his fast-growing, fast-greying stubble; to launder his pastel shorts and polos. Though he enjoys flipping through my mother’s catalogs, Andrew cannot read. He cannot operate the iPad, nor can he venture outside on solitary walks. Left to his own devices, he cold-calls my grandmother to propose hypothetical dinner plans; he tunes the kitchen radio to oldies and lowers the volume to a hushed, white noise that textures all our conversations; he encamps in front of the television and stares into the airport-carpet lecture-spectacle of a Dr. Phil episode, whisper-shouting admonition at the revolving door of guests trying to justify their behaviors and looking like they are about to cry. When I key into the house, he is in the living room, sitting in his blue pinstripe chair, watching the drama of people’s lives crumbling, and I worry about him getting lonely.

I worry though I know he is in good hands—my mother’s. She is his primary caretaker. She has shouldered the responsibility with a level of patience and compassion that ought to get her fast-tracked for sainthood, and she has done so for longer than I have been alive (with enthusiastic, periodic help from my father). But still, I think of myself as Andrew’s guardian in shining armor, the sibling who will make him lunch and help him unpack a future whose only certainty seems to be uncertainty. It gives me purpose, romanticizing my brotherly role in this exaggerated, self-centered way, convincing myself that he wants my help and not the other way around.

*     *     *

But perhaps what scares him more is the unpredictability they represent. Jumping up and down, shuttling back and forth, barking, dogs are incarnations of everything in life he cannot tame.

In my earliest pre-kindergarten memories, I am aware of my brother needing my protection and supervision. I remember him screaming and scrambling behind me when the neighbor’s three Labradors ran towards us, off-leash. I remember the story of our uncle’s tall, long-snouted Airedale cornering him at a Christmas party, how my brother (six years old at the time) stared into what he thought was the wiry muzzle of death and muttered his first expletive. “Shit,” he said, “What now?”

According to family legend, my brother has always been terrified of dogs—their strength, their quickness, their teeth, but also their wild spontaneity and unpredictability. Andrew does not possess the hand-eye coordination, nor the reflexes, to contain their energies, so to him they are an existential threat. So much of my life has been spent imagining what my brother is imagining—thinking, seeing, meaning—and I imagine he finds it scary, the idea of a German Shepherd latching onto the back of his leg and not letting go. But perhaps what scares him more is the unpredictability they represent. Jumping up and down, shuttling back and forth, barking, dogs are incarnations of everything in life he cannot tame. They are demons of uncontrol, and Andrew does everything in his power to avoid them.

Knowing this, I have always considered it my responsibility to shield him, both from the fear and its trigger, to stand between him and the perception of danger barking, “Hey, get out, go away, shoo.”

*     *     *

As we begin co-sheltering into the middle of March, I become aware of all the mundane ways I protect him: by cutting the tougher pieces of meat on his plate, latching his belt and tying his shoes before we leave the house, letting him take the passenger seat of a car, and helping him adjust the seat-back to his preferred upright position. My mother and I offer this aid as needed, punctuations of care that demarcate the things we are constantly helping him with, such as his anxiety about scheduling.

A consequence of my brother’s illiteracy is his inability to manage a calendar, or to follow his place in the family calendar unfurled on the kitchen countertop. Unable to participate in this life-organizational practice, he misses out on the experience of writing down a plan and feeling its permanence, of returning to the calendar and reminding himself what he has to do—so we speak the calendar into existence for him: clarify and confirm and re-re-re-recite his activities for the week. To neglect this job would constitute a kind of torture. Few things stress Andrew more than not knowing what the future has in store, when exactly his checkup with Dr. Held will be and the likelihood of it happening. Few things can reproduce in him that deep, existential worry of not knowing what to look forward to—not knowing what to imagine. 

So, he constantly asks us about his upcoming activities, and we constantly remind him that, yes, they are, in fact, still happening. “We’re going to nonna’s at six tonight?” he will repeat, several times in an afternoon, and each time I will confirm, “Yep, dinner at six,” rooting him in the present with clarity about the future.

*     *     *

At the end of March, the virus infects our calendars and starts deleting our appointments; and as the futures we had imagined for ourselves begin to dissolve, I observe how Andrew goes about his day—to see if he is absorbing any of the tension. He doesn’t seem to be, yet, but I know there is going to be a psychological adjustment, and I figure it will be a much more difficult one for him to navigate. I picture him stressing into the absence of predictability, pulling more buttons than usual off his polo shirts, bothering an exaggerated number of blemishes on his chin. He will lose himself in these small acts of self-destruction while my mother and I lounge in the living room, nestling into our prize-winning fiction after attempting a recipe from the braised meats section of our Italian culinary bible.

We will all have appointments to reschedule and free time to fill. But I suspect the uncertainties will be much more unsettling to Andrew, the one among us who already suffers from a chronic lack of control—who cannot read beyond the letters of his name and the hands on a clock, who does not seem to follow the plot of the television show we are watching, who cannot quit his anxious fussing (flicking the bangs off his forehead, adjusting his shirtsleeves, and pulling on the re-re-stitched buttons of his polo shirts). I figure my mother and I will struggle to keep him from backsliding into one of his uncommunicative states, where he sits quietly in his armchair, nodding along to our questions or dismissing them with a string of automatic I don’t know’s, folding and flattening and re-folding a catalog for so long it shreds. I worry about his capacity to weather change, his strength, his resilience, which seem, at the moment, like synonyms.

I am surprised when the opposite happens. In the first week of April, as my mother and I grow irritable in front of the television, watching the same press conferences about transmission curves and ICU capacities, my brother eases into his mornings, making himself double-shot espressos and politely inquiring about the day’s activities. He perceives the global concern and understands the basic reason for it; he worries about getting sick and having to wear a mask; he laments not being able to attend his state-funded special needs program—and not being able to see his friends (Brian, Moses, Abby; their names slip into our conversations about dinner and groceries)—but he accepts our explanations.

I am glad that he seems to be taking things in stride when my mother and I are not, though part of me wonders into the prism of why: Why does he not seem more upset about the world turning upside down? Why isn’t he more fragile? Does he really understand what’s going on, why his program has been shut down? His success, his adaptability in the face of sudden change, is so unexpected it requires an explanation.

When I ask him why the bus isn’t picking him up tomorrow, he looks at his feet and says, “the virus?” When I say, yyyyyyup, he raises his palms in comic, performative frustration: “Okay, maybe in a couple weeks then.” He overhears us debating May as a possible reopening month for the state of Massachusetts, and he latches onto the promise of a date. “Maybe May,” he repeats, for a week, until we explain the truth that has slowly been revealing itself through the haze of our government’s optimism and misinformation, that his program will not reopen until much, much later. We aren’t able to tell him when exactly, and I expect the uncertainty to distress him much more than it actually does. “Okay, maybe in the fall,” he starts saying, taking refuge in a future that my mother and I cannot see through the fog of our ever-expanding, suffocating present.

*     *     *

As time has been flattening into the spaces where I consume television and read books, I notice how time is a dimension Andrew tethers himself to, an aspect of the world’s ticking that his illiteracy does not obscure. He can read most clocks—analog and digital—and he understands the concept of time passing, of the sun appearing and disappearing, that one comes after twelve. He has memorized when the important things in his life happen (or used to): that the bus would pick him up at 8 a.m. and that lunch would be served at 12:30 p.m.; that the same bus would bring him home at 3 p.m. Years ago, he decided 4 p.m. was an appropriate time for an afternoon espresso, conveniently spaced between his post-lunch coffee and dinner, which he and my mother usually begin around 7 p.m. so they can finish in time for Jeopardy at 7:30 p.m. and (if my brother gets his way) Family Feud at 8 p.m., which he watches until his self-enforced 9 p.m. bedtime.

Andrew drapes his life over the structure of half-hour intervals and spends much of his day watching the clock, following the passage of time, making sure the things that are supposed to happen do. If a visit to our grandmother goes a little longer than expected, and it seems like dinner could be unceremoniously delayed, he reminds us, “Dinner at seven?” Ten minutes before lunchtime, he mills around the kitchen and pulls out the sourdough bread and spiral ham he would like his sandwich made with. If I tell him we can go on a walk at 5 p.m., he begins shadowing me at 4:45 p.m.; and if I seem lost in my phone or a book, he reads the time out loud, without explaining why. Every Sunday at 2:30 p.m., he calls a family friend in Italy; so, if we are approaching this time and not near a telephone, he will get upset. “We need to go home,” he complains, and we understand why. In the middle of April, Andrew decided that Thursday evenings were now “Dinner with Our Father” night; since then, he has spent every Wednesday double- and triple-checking that we are in fact going to our father’s for dinner the next day. “Okay, we’ll go at five o’clock then.” He asks the question in the form of an answer and waits for a confirmation. “Yep. Five o’clock,” I tell him. 

He gets stressed when the things that are supposed to happen do not: if we do not order the Vietnamese food that we said we would, if the espresso machine blinks red and emits a grinding hum for no apparent reason, if the television gets stuck on Apple TV mode. The more surprises he confronts in a given day, the more exasperation bleeds through his whispered shouts, “Cmon!” “What?!” “Not again!” and the more we reassure him, tell him not to worry, that it isn’t such a big deal, when to him it clearly is.

*     *     *

As I begin to confront these feelings in myself, in the context of a pandemic whose science I barely grasp, I feel like I am beginning to understand an aspect of his struggle, which is the difficulty of living with this sensation of uncontrol, of not having one’s hands on the levers of even the most mundane, quotidian decision-making, and not being able to name all the frustrations bubbling out of that state.

I realize something now that perhaps I should have understood years ago: my brother’s exasperation in these situations has always been about more than just surprise, more than not getting what he wants. It has also been about a lack of control, not being able to decide what happens next—or to figure out what is wrong, or why. As I begin to confront these feelings in myself, in the context of a pandemic whose science I barely grasp, I feel like I am beginning to understand an aspect of his struggle, which is the difficulty of living with this sensation of uncontrol, of not having one’s hands on the levers of even the most mundane, quotidian decision-making, and not being able to name all the frustrations bubbling out of that state. I can see how the lack of agency might haunt him, and how he must be reminded of it when I refuse to tune the radio to his favorite station (“Sixties on Six”) or buy him another cheeseburger or let him watch a third consecutive episode of Family Feud. So rarely the decision maker in the family, he must find control elsewhere.

When April thaws the last mounds of ice keeping us indoors, my brother insists on turning our sporadic outdoor activities into daily routines. One of these is to walk the suburban loop around my grandmother’s house. We start with a single lap, which bends a half-mile past her front yard, her neighbor’s three acres of mowed grass, and curls back around to her backyard. The next day, we do two laps. Then three, where we seem to have plateaued, my brother tiring on the homestretch, sweating into the back of his polo. We take it at a brisk pace for his five-foot-five, 200-pound frame, and I remind him to control his breathing, to inhale deeply. I quiz him on the names of our grandmother’s neighbors and point out woodland creatures—squirrels gathering acorns and wild turkeys grazing. When I’ve run out of houses and animals, I ask him to add up the laps we’ve completed and to subtract this number from three. I tell him this is the number of laps we have left.

Still, there is free time on the walk, and I have begun to fill it by playing old-fashioned Italian tunes that he and our late grandfather used to listen to. The songs were a soundtrack to their friendship, which ended a decade ago with my grandfather’s stroke. Andrew remembers them all, not the precise lyrics so much as the vowels and melodies. He requests specific songs, not by their official titles but by random mispronounced words in the refrains.

When we finish our third lap and join our grandmother outside for a round of socially distanced espressos, he catches my gaze and says, “amorata.” I know he is asking me to play a cover of the Neapolitan classic “O surdato ‘nnammurato” recorded by Massimo Ranieri, so I do, for his amusement and my grandmother’s (who grew up listening to the original in war-torn Italy)—and on some level for my own. As they hum along and my brother conducts a nonexistent orchestra, I feel useful in my technological literacy and altruistic in my sacrifice of time. I feel this care has given me some of the purpose I was seeking.

*     *     *

I find myself taking credit for Andrew’s smooth adjustment, for initially suggesting the activities that have become rituals and for facilitating them. Sometimes, when I am driving us to my grandmother’s house for one of our afternoon walks, I wonder, how badly would Andrew be struggling without me? and part of me relishes the thought, casting myself as the caretaker and him as the grateful beneficiary of my attention. I am happy to think of myself as the empowered decision-maker in this formulation, the taskmaster and emotional problem-solver, and to imagine my brother as the follower of my lead. But another part of me recognizes how deeply false this narrative is, that I too am clinging to these rituals, and that Andrew is making me observe them. This part of me is aware that, without him, I would not go walking every day, and without the structure of a 4 p.m. to 6 p.m. activity, I would feel less purposeful and deliberate.

Though I drive him to my grandmother’s house, Andrew drives me more figuratively: to have discipline, to be punctual, to do the things I said I would. When he plops into the armchair beside me and gently reminds me of the time, I know that on some level he is controlling me, coaxing me to drive him, imposing structure onto the blankness of my day. In the story I have constructed for myself, I am the one in charge. But I suspect his narrative, if he could tell it, would be different. I imagine he would see himself in control of something, too, whatever control means to him.

After three months of living with my brother, control is revealing itself to be something felt rather than something possessed or inhabited. I wonder now if I have ever really been in control—or if I have simply felt that way momentarily. For example, driving a car comes naturally to me. I feel our weight on the road and can sense how quickly to take a corner, but it stands to reason that a tire could be losing pressure without my knowledge, or that another car could be reversing out of a blind drive. Soon, it could be revealed that control was never truly mine, that it just felt that way. Did I really have control if I was able to lose it? The difference seems more than semantic: the possession versus the feeling of it. Feeling implies an emotional state we crave, while being in control suggests a matter of objective fact existing outside ourselves. Being means we either are or we are not in control. Feeling suggests we might want to convince ourselves we are in control when perhaps we are not.

*     *     *

I notice how Andrew has built his life around things he feels like he understands—and avoids ones he does not. He avoids dogs and electric shavers. He does not go near my mother’s stove. He would never sit in the driver’s seat of a car. But he hovers around the espresso maker, serving anyone who asks. He has become the machine’s custodian, re-filling the water tank and emptying the spent-capsule receptacle. He knows the sequence of buttons to extract both a long and a short espresso, just as he knows the sequence of buttons to make Judge Judy appear on the television. He knows how to tune the kitchen radio and modulate the volume, and he is happy in these confined spaces of knowing. He surrounds himself with these machines as if only these machines existed, as if his whole life were spent knowing how things worked, which obviously it is not.

Obviously, he spends a good deal of his life out of control, not making decisions and not knowing how to operate machinery. And it is in these spaces of uncontrol that I have noticed his ability to feign control, to claim the feeling of control when he does not seem to possess the fact of it. If I decide to pick up Vietnamese food for dinner instead of grilling hamburgers, he will at some point command me to go pick up the Vietnamese food (usually when I am meant to go). If my mother and I have agreed to watch a certain movie after dinner, he will tell us—in the latter stages of said dinner—to play the movie. When he comes downstairs in the morning, he does not ask me to toast him an English muffin and slather it with extra-chunky peanut butter; he holds up a package of muffins and points to the kitchen. He has learned to feel like he is exerting control within a broader context of uncontrol, to create moments and spaces of decision-making within the general absence of it, and I am beginning to see the brilliance of this strategy, the mind game as an adaptation rather than an absurdity.

*     *     *

If I wanted to disregard what feels like a revelation, I would question whether my brother fully comprehends what people find so scary and upsetting about this pandemic. I would suggest that his ability to imagine another future and reconfigure his activities derives from an inability to understand what there is to fear—people dying en masse, nationwide ventilator shortages, largescale asymptomatic spread—and I am tempted by the simplicity of this conclusion. It would maintain the status quo of me being abled and resilient and him being disabled and vulnerable. It would confirm the binary I have grown up believing and reinforcing. But I know it would be an evasion of something truer, because I know that my brother has shown himself to be, in many ways, more resilient than my mother and me.

This pandemic has happened at a time when the concepts that might save us are so ambiguous, unpracticed, and cliched that they seem to have lost purchase. What do we mean when we talk about losing control—whose control? What is being in control? Control over what? Resilience is another word that has drifted into ambiguity. We will all need to be resilient. But how? What exactly is resilience? Among my friends, it tends to mean a kind of fortitude or strength, an ability to withstand, that slides into a determination not to budge or be moved. A resilient person is one who buttons their jacket and leans into the wind. But I wonder what else it can mean.

Merriam Webster—

1: the capability of a strained body to recover its size and shape after deformation caused especially by compressive stress

2: an ability to recover from or adjust easily to misfortune or change

American Psychological Association—

“Psychologists define resilience as the process of adapting well in the face of adversity, trauma, tragedy, threats or significant sources of stress…. As much as resilience involves ‘bouncing back’ from these difficult experiences, it can also involve profound personal growth.”

Resilient (adj) from re (Latin: back) + salire (Latin: to jump, leap)

To so many of us, fragility is shameful. Weakness is undesirable. Feeling pain is indulgent. Since resilience is supposed to be virtuous, a quality we all strive for, we seem to have pushed it away from pain and weakness and fragility

What I find surprising and refreshing about these definitions is how they dignify weakness and fragility, positioning them not in contradiction to but as essential components of resilience. According to these sources, resilience is built upon a premise of weakness, a scenario in which someone has already been knocked down. The Latin resalire means to jump back up, which implies that resilience can only happen after a moment of manifest weakness, when someone has lacked the strength to stay on their feet. Merriam Webster alludes to this etymology, employing the word “recover” twice. The APA links personal growth and “bouncing back” to “adversity, trauma, tragedy, threats or significant sources of stress.”

The possibility that pain and weakness might not be entirely bad—that fragility might be a component of resilience and thus, paradoxically, a vector of strength—seems so unimagined in our twenty-first-century strongman culture. To so many of us, fragility is shameful. Weakness is undesirable. Feeling pain is indulgent. Since resilience is supposed to be virtuous, a quality we all strive for, we seem to have pushed it away from pain and weakness and fragility—and redeployed it to mean strength and fortitude in the most traditional, toxic, American senses of those words. Urging resilience today can be akin to promoting a kind of entrenchment, an attitude of fighting back and not giving up, which strikes me as an attitude that favors a maintenance of the status quo. To be resilient (in many circles, including mine) is so often to resist change and to resist imagining change, and I can’t help but connect this resistance to our unwillingness to imagine our own pain, our struggle to admit that we have been, or may in the future be, knocked down—which, of course, is absurd. We will all be knocked down. We are all weak and infirm and disabled eventually.

The resilience I once imagined as a combination of strength and endurance—fortitude against a strong opposing force—I now see as a quality much more similar to adaptability. Not fortitude against something, but a willingness to change, an openness to break and reconfigure. This willingness to change requires a certain vulnerability to imagine oneself changing, and I know my brother has spent thirty-eight years practicing and honing this vulnerability. And I know that I have not.

I suspect this is partly a symptom of my inheritances: among them my toxic cishet white masculinity and ableism. I was trained not to imagine myself breaking, not to think of myself as being in any way inferior or in any way fragile. I grew up a privileged white American boy in the 1990s; if I was encouraged to imagine anything, it was winning gold medals and driving moon buggies while everyone else in the world was farming. A similar kind of supremacy operated within my family too. Growing up with a disabled brother, I defined myself as the healthy one: he was vulnerable, so I was strong; he was emotional, so I was rational; he was disabled, so I was abled. I lacked the conceptual framework to imagine his strengths in the semiotic field of our family, so I didn’t. Andrew was a loveable collection of weaknesses and peculiarities, and I was his protector.

Recognizing my brother’s resilience means acknowledging that this way of thinking was wrong—that I was never my brother’s savior in the all-encompassing way I have imagined. That in many ways, he was mine.

I want to express this to him and for him, to give his resilience and patience a voice, though I realize the irony: that he cannot read or respond to anything I have written, that I have effectively seized control of his story, perpetuated his lack of agency, in an effort to discuss it. If this were ever to appear in print, he might be able to read his own name and see his own face in pictures, and maybe that would help him decide whether the story has honored him. I do not know how to broach the topic, nor how to explain why I’ve translated his lived story, except to say that writing is one of my coping mechanisms, one of the ways I try to claim the feeling of control when perhaps I do not possess the fact of it—with grammar, punctuation, and paragraphs that are just long enough to seem heavy with meaning.

*     *     *

It is June now. Walking side-by-side around my grandmother’s neighborhood, my brother and I continue to act out our ritual: replaying the same Italian songs, doing sums of three. I point out the neighbors’ houses and quiz him on their names, and he seems happy in this space, knowing these things will happen. One thing I haven’t mentioned yet and have apparently chosen to hide within the walls of this penultimate paragraph, is that these walks help me with my chronic hip pain. That I have had four surgeries in five years to help relieve this pain (three hip arthroscopies and one sports-hernia repair), and that of all the prescriptions my doctors have offered, walking is the one they all seem to agree on. Another thing I have avoided mentioning is that the pain became so exhausting last year, after my third hip surgery failed to resolve my issues once and for all, that I almost had a breakdown, and that my coming home was partly for the company, to allow myself to be taken care of. Maybe I haven’t mentioned it because it makes me seem weak, and I remain tied to the myth that so-called “abled” people ought to be in control, rational, strong—that my brother is the person I am helping, when really, he is the one who I am studying and learning resilience from. Maybe I have made this story about taking care of him because I don’t want to think of myself as an injured party, a strained body needing to recover. Maybe it’s time I acknowledged that.

We finish our three laps in record time, just under eighteen minutes. I watch Andrew go inside my grandmother’s house to make three espressos, and from my folding chair I can see him manipulating the machine: taking out coffee grounds and refilling the water tank. He does everything slowly, carefully, precisely, almost affectionately. He makes two espressos and carries them outside to my grandmother and me. “Do you want a pizzella?” he asks. I nod. He goes back inside and comes out with another coffee and two of my grandmother’s homemade waffle cookies. He passes me one and sits down, and before he says anything, I play the song, his favorite: “O surdato ‘nnammurato” by Massimo Ranieri. My grandmother hums the first few notes, and my brother looks up at me. “Yep,” he says, “amorato.” He lifts a finger to conduct a nonexistent orchestra.