The third day I cared for you was the first time I saw you drop to the floor. We were walking down the hallway to your room when you gasped and jerked your arms upward. My grip on your right hand, where I held you from behind, shook loose, and you swung in slow motion from the hinge of my left hand. Smacked the bare linoleum on your right shoulder, the bad side. “Damn-damn-damn it!” I thought and, forgetting all they taught me in first aid, rushed to pick you up from where you lay blinking.
The surprise of the expected – that’s a paradox, now, the real bitch of the whole thing. Any moment could be an episode. We never know when.
Sometimes I see the seizures advance on you like waves. Often in the mornings, right after you’ve woken up, while you sit at the edge of your bed. “Rollercoasters,” I call them, for the way your body dips, rights itself, dips again ten, twenty, thirty seconds later. Your eyes roll back, your head bobs. Or sometimes, in the midst of a cluster, I’ll ask, “Are you traveling? Where are you?”
The words are an attempt to contain the un-nameable, to domesticate the fear that your seizures sometimes bring. All the more mystifying since you yourself cannot describe them. Each phrase is slight, failed from the get-go. Still, anything to stave off fear. So I keep labeling. And I keep holding you in my hands. Hoping you don’t slip through.
Amidst the wildcard epilepsy, your days unroll in routine. Measured out in cc’s of formula and anti-convulsants, the bargaining of the breakfast hour (“Take one more bite? One more?”), the walk down the hallway to sit on your bed. We read your favorite story about a moose I’ve somewhat unconsciously christened “Murray,” who has an embarrassing facial hair problem. “Isn’t that silly?” I always say. You smile and laugh. You grow quieter near the end of the story, when Murray overcomes self-consciousness by finding love, but I think probably you just get tired and lose focus.
One day, after we’d finished reading, I placed the book on the table opposite your bed. You walked over and picked it back up. The closest I’ve ever seen you come to saying, “Again.”
Popcorn again. Every morning, between 10 and 11: popcorn. Not even Murray the Moose can compete with this, the focal point on which the rest of your day revolves. After the trip to your bedroom, we shuffle back down the dark hallway (me holding onto you from behind, always always, just in case…) to the living room, where I will serve you your most favorite snack, the meal you never refuse. Popcorn.
An EEG tracking the fluctuation of electrical impulses in your brain would record your atonic or “drop” seizures as a “slow-spike wave” – a series of fairly consistent waves occurring over a low frequency of 2-3 Hertz. At 2.45 gigaHertz – the same frequency, a billionfold – the electromagnetic waves of the microwave oven heat the popcorn kernels till the internal pressure causes them to explode. I suspend between these two dynamics – the inner voltage that manifests in outward motion, the outside energy that propels the insides out – and calculate, observe, calculate.
“Can you imagine?” your mother said. “Nineteen-years-old and he’s never said a word. Never once been able to say, ‘Thank you, Mommy’ or ‘I love you, Mommy.’”
I tried to and could not imagine two decades of a mother’s longing.
Nonverbal, the chart at the agency notes. So we read your body in all things. Not only in the epilepsy, but the routine as well. Your language is effective in its economy, alarmingly polysemic. You smile when pleased, head cocked to the side as though listening or recalling a hilarious secret. Open your eyes wide and zoning at the overhead roar of a plane on its way to Eielson AFB. Meet your fried egg breakfast with stiff neck, welded-mouth, and eyes half-shut in disdain. Shake your hands back and forth at the sound of the microwave whirring or the sight of Elmo on TV.
Then there is the audible smile, epitome of a joy mute in origin: eyes crinkled and mouth wide open to show off the gaps between your white pebble teeth, and the gleeful sigh, Waaaahhhhh.
In response to your mom, I had said, “It’s obvious he does, though.” Love you, I should have added, but felt it maybe presumptive or trite. I should have said, “He smiles every time your car pulls into the driveway,” but that didn’t sound right either.
Never have I pondered popcorn as much as I do with you. But popcorn can take an hour on a good day and is doled out flake by flake. When we cough, you laugh (does it remind you of a kernel-burst?); when you cough, we worry, knowing how little it takes for pneumonia to hunker down in your lungs. So we take our time. You chew and tongue your morsel, sometimes stop while a myoclonic seizure makes one side of your face twitch, and I sit and study the snack. Fancy myself a popcornologist.
Popcorn is queer. I remember shifting through pieces on the plate one day, turning the mealy profusions in my hand, and thinking, “They’re blocky.” Pure astonishment. Of course, it is not really true. The popcorn pieces were blocky that day, not the next.
Some flakes expand in line like a sentence. Seraphim, I have deemed them, many winged and many eyed. These are the best ones for you. Fluffy, fully bloomed. Frail. They crumble at touch or tongue. Others bend over in little tents – “butterflies,” they’re called commercially, while yet others, more round or bell-shaped. And the shapes in between that one could signify like clouds: this one’s a bowtie, look, there’s a werewolf. Octopus, ligtbulb, tractor, goathead. All ablush with the shade and taste of liquid butter.
At the bottom of the bag, popcorn kernels that remain self-contained, one or two fleshy lips lamed by a hardened-shell adhesion. Failed attempts at full expression. I eat these.
Sometimes the seizures advance on you like waves. Your body bends like a wave. Your body stiffens like a crest. Your mom tells me you dropped while stepping from the bath the other night. Your naked slickness evaded her grip and you plowed headfirst into the porcelain fixtures. An angry welt rims your left temple today, and you sleep, sleep, sleep.
Sometimes the seizures fall on you like showers. A steady drizzle of disorientation. Your demeanor closes on the near distance. You do not hear your name called. Some seconds later, the cloud unburdens itself to clarity. You see the room, you hear the wall clock chime the hour with a trilling “Here Comes the Sun,” and at that moment it seems you cannot open yourself enough to the immense ordinariness of the living room. That is the moment when truly you are struck and thrumming as a bell.
The surprise of the expected, that’s the beauty of the whole thing. The resounding declaration of the opening microwave door, and you immediately grin and hum. I place the flattened bag inside, punch in the time: 2:00 and the microwave glows. You sit up straight on the couch, crane your neck for a peek, keened forward in anticipation of the first exploded shell. Your excitement only heightens with the clustered sound of kernels bouncing off each other and the bag. You wave your hands – back and forth, back and forth.
You do not take taste for granted. Each piece is experienced as individual. This one might deserve a wide smile and delighted laugh while the next makes you furrow your brow in confusion or seeming disapproval. This one, eh. And so on. Popcorn piecemeal. Pensive popcorn. Popcorn perplex.
Breakfast is a daily trial. The agency has given me a “goal sheet” of particular developmental objectives to work on with you. The number one priority is to get you to eat more by mouth. Despite my most brilliant strategizing, the success of this goal is hit-or-miss. More often than not, I cannot get you to eat more than a bite or two before you begin to twist your head this way and that, refusing to even have in eye-line the bit of oatmeal or egg or potato hash that I advance. You jut out your chin or block your mouth with your tongue, deftly parrying the dietetic imposition.
The breakfast hour: I trace the borders of my patience here. Note the territory’s tidy conformity to my own desires and schedule. To stretch beyond myself excruciates me, like banging my head against a hard edge. It would be easy to say that the impatience springs from genuine concern – I want you to be healthy; to be healthy, you must eat; when you don’t eat, I become concerned (that is, impatient). But I also recognize how my concern is disabled by a misplaced sense of control. The idea that: I. Must. Do. This. For you. Yes, you are sounding out my limits.
One of the “goals” with popcorn is to have you reach for it, to exercise your range of motion and fine motor skills. All the more important since the operation to quell your epilepsy three years ago resulted in a stroke, a blood-flood in the brain that sapped your vim.
Now your arm quivers toward the flake I proffer between my thumb and index finger. Your own fingers fumble to grasp and you push it into your mouth with a crude sweep. Crumbs accumulate around you.
The surgery was a corpus callosotomy. The doctors severed the white matter that transfers signals between the two cerebral hemispheres. In verbal patients, the corpus callosotomy leads to a condition called “split brain,” where things perceived in one side of the visual field cannot be vocally identified. Split brain can also result in cognitive deficiencies; when two images are perceived in different visual fields, a patient’s reasoning will pertain only to the image seen in the right visual field, whose processing center is on the same side of the brain as that of verbal cognition.
I also struggle with holding split perceptions, of being able to understand you, myself, or others from simultaneous, seemingly disparate angles. To acknowledge together weakness and unassailable strength, burden and gift issuing forth from a common source. Too often my corrective measures are unbalanced and cost the loss of one side.
It is rare that you will reach out for popcorn with your right hand.
Mid-morning, I feel my body clamp up like a vise – the telltale herald of menstrual cramps. I search my purse for pain medication and finding none, brace myself for the worst. For an hour or so, the pain grows then cuts me through in a clean line. The pain cleaves my body in two.
Still, I resolve to be the caregiver. We walk down the hallway, sit on your bed. Read about Murray, though I punctuate the tale every so often with a groan.
By time for popcorn, I am incapacitated. Gasp and flop about like a fish. Nausea forces me to the ground and this is how I hand you your snack– flat on my back or contorted, legs propped up on the couch perpendicular to the couch where you sit. I hold up a flake for you to grab, wait for the smack of chewing, the submerged croak of your swallowing and then raise my arm with the next piece.
I am careless in anguish. I shake the bag too violently. Popcorn showers down on me, sprinkles the carpet. I roll on it, crush it, lay there in fragments.
You sit on the couch and wait, an odd solace in your unapprehending witness. You do not show concern or pity, disgust or indifference. Assure me that it’s going to be okay or otherwise. Encourage me to eat an egg. Instead, you use my head as a footrest. When I hold up a new piece of popcorn, you wrinkle your nose – Waaaahhhhh. Look down at me with sparkling eyes. What fun! they say.
Popcorn as seizure. The pieces that stretch out like a sentence remind me of your “drop attacks”, how the split-second atonicity and loss of equilibrium results in the limbs flailing outward, even when sitting or lying down. The tented butterflies are the myoclonic seizures – the ones where both your arms clench up in an invisible weight-lifting curl, or your face twitches for a spell of ten seconds or so.
And the small, half-popped kernels, they’re like this petit mal or ‘absence’ that leaves you staring into space, drool collecting in your mouth while a flake of popcorn remains unmasticated, till –
a blink, a lipsmack, you awake. To taste sensation, to the sight of the full plate. It is all new, all feast and surprise and delight. You grin through half-chewed grain and give an enthusiastic Hnnnnmmmm! We resume. Popcorn as sunrise, as the indefatigable dawn.
There is a story your mother tells that I find enthralling. Of the old woman who approached you at Wal-Mart one day, got in your face and started talking baby-talk. (“It’s hard not to think of him as a baby sometimes,” your mom concedes, “since his developmental level is so low.”) Then, how lickety-split you cracked a smile, reached into the crone’s mouth and yanked out her lower dentures. The outside energy that propelled the insides out. She squealed, “My feef! My feef!” and you just waggled your arm, confounded at how her speech stuck to you. Fixodent and such.
You, like any of us, want for connection. That’s why we read stories together. Why I call you by name and meet your gestured vocabulary with vocalized response, why I play music for you and sit next to you on the couch and narrate our way through the day out loud. Enough for us all to hope for, isn’t it? A companion. Someone to tell the story back to us.
Sometimes self-consciousness grows in the wake of your silence. What I say sounds feeble. My words boomerang. You the rubber, I the glue. Often I’ll repeat the same phrase twice, hoping the echo will serve as an answer. And in some ways, it does. “We’re going to stand up now. We’re going to stand.” “Are you traveling? Where are you?” You are a keen listener, giving back to the speaker what she says.
But at the best moments, you defang me. Make me recognize the frailty of these words, the cracks in my language. The fragmentary self I so wish would cohere into an organized whole as I continually assert that I, unlike you, am developmentally able.
I forget that at its root, “develop” means “to unfold” or “unwrap.” Dis-envelop and reveal what’s on the inside. Who knows the manner in which this revelation will take place – disruption, like a seizure? Or through routine, the same actions played out a billionfold?
I toss a bag of Orville Redenbacher into the microwave. An electric hum. You perk up and listen. The rattle of exploding seeds soon fills the air.
Perhaps development might be better understood as a discovery of our common weakness than as an upward progression toward autonomy. Breaking through the husk just to fall apart (what will it take for me to shed mine?), and in this, find nourishment.
“He doesn’t like to have his face touched,” your mother tells me one day, “but I do it anyway, just so he stays used to it.” She sits on the couch facing you and caresses your cheek in tender repetition. “Momma loves you,” she croons. “Momma loves you.”
You stare at her, mouth open, eyelids flickering in agitation or wonder or both. The lexis of the just-bearable, a force that won’t let you fall. With her other hand, your mother takes yours and strokes it across her own cheek, her face tipped forward and smiling. “And you love Momma,” she says.
One day I was on my knees in front of you, helping you get dressed. You once again seized while standing – a second’s lapse of muscle tone; gravity forced you out and down. Your forehead bashed against mine. I quipped, “Practising your ninja skills, huh?” and finished buttoning your shorts. But the impact lingered. A storm cloud gathered behind my eyes the rest of the day and only relinquished its weight in hours of sleep. I awoke with a traceless mind.
I will return to words soon enough, run to them, hide in them, take them up as my weakness. They will be all new. I will write you an essay.
But for now, we are here on this couch, eating popcorn. The wall clock strikes the hour and minutes pass in quiet. Language becomes the squeak of grain against the paper plate. The kernel-bits crackling between our teeth. The unassuming pressure of your foot against my knee.
You are teaching me to take each moment by the hand. To reach and take this moment from your outstretched hand. Awake to this moment, then this one, and again – oh, hello! The joy of it, what a strange shape. Awake. Awake. Awake.
Sarah Jane Holsteen holds a Bachelor’s in Spanish from Wheaton College in Illinois and is in her third and final year of the creative nonfiction MFA program at University of Alaska Fairbanks. She has been previously published in South Loop Review.