Metronome

Editor's note: The following is an excerpt from Live Through This, a memoir in progress by Astra Lincoln, one of our 2024 Community Storytelling Fellows. In September 2024, Astra was named as a finalist for The Yale Review's inaugural Nonfiction Book Prize.

 

The receptionist at the concussion clinic tells me that my intake appointment will include a session with an occupational therapist, a kinesiologist, and a physiotherapist. Would I like to schedule them back-to-back in one three-hour appointment, or space them out? I schedule the appointments spread out across a week, but then I cancel all of them. The winter unspools and then stales. I reschedule.

The office is all slatted wood like a sauna, bromelias crawling out from between the boards. The occupational therapist leads me into a room and asks if I want her to turn off the lights. This portion of the test will have four parts. And it is probably going to hurt, she says, resting her hand briefly on the back of my hand. I hope you cleared your schedule for the rest of the day.

Five hundred and seventeen days after the accident, I am screened for a concussion for the first time.

 

When the test ends, the occupational therapist brings me a mug of tea to nurse while she runs the numbers. In the absence of a quantified baseline, it’s harder to assess change, but we can approximate what sort of person I was.

My best guess, she tells me, is that you’re operating at about 30 percent capacity.

For the very first time, I am offered a name for what has occurred: post-concussion syndrome, three words that will provide scaffolding to contain my experience, even as it continuously supersedes interpretability, refuses to stay put.

The occupational therapist tells me to make a list of everything that triggers my symptoms, and I try. Cars that get too close. The way it feels to drive 60 miles per hour. The sound of the bus engine, the sound of ambulance sirens, the sound of electricity running through the walls when I turn on the lights, the sound of the fridge knocking on at night, the amplified murmur of blood circulating in my head when I wear ear plugs to cancel out the other sounds. Any situation where more than one sound is occurring, like when someone is speaking but there’s music in the background, or other people’s conversations, or the wind rattling the panes. Fluorescent lights, flashing lights, colored lights, or the way that light dapples in the forest. The freefall moment when I trip on a crack in the sidewalk that extends out for hours. Hunger, thirst, cold temperatures, hot temperatures, and humidity. The need to occasionally do mental math, as much as I try to avoid it. Meeting new people and trying to make a halfway-decent first impression, or running into familiar people that I worry might see through the charade of my composure. Speaking to people in power; people I want to flirt with; people that are a little too subtle when they are being sarcastic; and people that are funny in a way that suggests they want me to be funny back. Any other situation in which I might experience heightened awareness or nervousness or fear or excitement: a first date, an afternoon that has especially spectacular light, an argument, a phone call with my insurance company, or intake questionnaires with the twenty-eight para-practitioners I’ve already told all of this to.

Avoiding half of these things would be impossible, I whine. Even this is confrontation enough that the terror and the hurt and the dizziness start to creep in. If you ever want to get better, you’re going to have to try, she replies. I wait for her to follow up with better suggestions, or something resembling a treatment plan. Is that everything you have to offer me? I ask her. It is.

The test, no more difficult than a child’s game, devastates me. I spend the next two days in bed.

When I emerge from my curtain-drawn quiet, everything is glistening. The sails on the boats bobbing in the harbor have all been spun in for winter, nylon tie-offs fluttering in the wind like the last streamers half-hung after the party’s over, but town has been flooded by its inhabitants as honey from a comb. Rare to get T-shirt weather this time of year. The afternoon is suspiciously blue with lapis light. Hordes of wealthy-looking White women stream past me with tiny paper bags swaying from their spindly wrists, all of them with unnatural early-season tans. I have stopped mid-stride. I am holding up pedestrian traffic. Somebody’s elbow bumps into my elbow, and her skin is so soft, I want to wear it like a blanket.

 

A day passes, and I am at the clinic again, ready to take the second intake test.

Nothing about Matt makes him look like a man that is about to change my life. He has boyish good looks, the kind that grandmothers love. He is bouncing on his toes in the concussion clinic’s foyer. Welcome back, he says warmly, like we’ve already met. The echoey room he takes me into is too bright, streetside, distracting. He asks if I’m ready. Of course I’m not. But I nod.

He pulls out a balance trainer—half a large rubber ball with a plastic platform on top—and instructs me to stand. How is that, he asks, and I shake my head. What is it supposed to be like? He smiles and tells me to squat, lift one foot, look from side to side. He replaces the large ball with two smaller ones, and I stand on those, too. Then he tells me to step onto the carpet, where he spins me until we’re shoulder to shoulder. I can smell the mint on his breath. He lifts a finger in the inches between us. Follow this, he says. He moves it up and down, slow and fast, and then the test is over.

Well, your balance is better than the average score of an Olympic athlete. I nod and he gives me a look like I’m supposed to be surprised. What? Of course it is. I exercise all the time. He squints for a second. Your balance is 99 percent better than we’d expect it to be based on your other test results. This is good news, he says. And? I ask.

And your optic nerve doesn’t work. He explains that when I look side to side, one eye or the other dips or stutters, the smooth tracking of in-sync eyes replaced by something closer to a baseball card stuck in a spoke. Inside every brain, there are two worlds—different images coming in from both eyes at all times. The closer they are, the easier they are to knit together. The images in my eyes, Matt explains, have drifted disastrously far apart.

 

As many as 69 percent of concussion patients develop a disorder of the vestibulo-ocular reflex. In a normally functioning brain, this reflex coordinates eye movement with head movement, ensuring images remain stable during rapid changes to one’s gaze. The reflex might be activated while running, or sitting in a room with a flickering fluorescent light, or standing under a forest canopy in a breeze.

Even a mild trauma to the body or the head can cause the brain to twist like a wrung-out towel. The rubbery mess contracts and then expands as it absorbs the impact, transmitting and reflecting pressure waves throughout the tissue, triggering complex reactions. What happens next is sometimes called a neurometabolic cascade. Neurotransmitters dysregulate; ion levels flux. Neurons linking the inner ear to other regions of the brain that once fired in synchrony now do so at a random staccato, causing tiny flickers that disrupt the stability of images. Risk factors for experiencing these dysfunctions following even the mildest of traumatic brain injuries include being female, being younger, and having a history of mood or learning disorders. Usually, optic nerve degeneration and functional vision loss begin one month after an injury; retinal cell death starts at seven months. The degeneration is often continuous and permanent.

When the vestibulo-ocular reflex fails, it causes vertigo in certain body positions; dizziness during and right after exercise; episodic vertigo similar to what one would experience during a migraine; unsteadiness and fumbling; a feeling of being pulled in by some force like a riptide, which is worse while standing still but also present when sitting or lying at rest; headaches; drifting to one side while walking. These symptoms worsen when the impacted person is in a challenging environment. Vertigo, especially, is pernicious. It causes the illusion of rotational movement, as though the brain, having spun once, is hanging onto the memory. Maybe the room is spinning; maybe it's just a feeling inside of the head. In periods of nervous system arousal, these feelings are sometimes joined by a sudden falling sensation, as though the ground is moving, or as though an earthquake has begun some place deep inside the body. These feelings may be constant or triggered intermittently by diet, allergies, illnesses, stress, hormonal changes, migraines, drops in barometric pressure, loud sounds, or actual physical sensations that would typically cause movement-related dizziness, like riding on a boat.

 

But of course, I’m sure you know all of this already, Matt says after he has explained. I shake my head. He drops his head to one side, his gaze searching, a little bit sad. This isn’t the first time you’ve been treated, is it?

I tell him about the twenty-eight previous medical professionals I’ve seen. But no one ever mentioned anything about my eyes.

His feet strike the ground, and his chair rolls back half a foot. His cheer falters, something like stubbornness or anger rising in its place.

He tells me that all of this has been standard practice for over ten years—disruption in oculomotor control had actually been first associated with brain injuries in ancient times. It is not new. This is basically malpractice, he says.

Matt shows me how to pull up a metronome on the internet. We stand and walk to the center of the room. I mimic him as he stretches his arms straight in front of his body, clasps his fingers together, and lifts up his thumbs. We’ll start slow, he says, and turns the metronome to forty. He tells me to swivel my arms around my body, matching my pace to the steady tick-tock coming out of my phone while keeping my eyes glued to my fingers.

Matt stops me after ten seconds. How did that feel? I tell him I want to throw up. He turns the metronome down to thirty, then asks me to try it again, just for ten innocuous seconds—there’s a second exercise he’d also like me to try. I flap from side to side a few times then shudder forward. He catches me before I fall to my knees.

The second exercise begins the same way, with my arms stretched out away from my heart. This time, I will only move my head, and it will be faster. He says that I should stop as soon as it hurts.

The average person can do this at maybe 140, 150 beats per minute, he tells me, but you’re not a normal person, so we’ll say your target’s closer to 180.

He sets the metronome to 100. All it takes is three quick snaps of my head before I am coughing and blinking and stumbling over my words. Easy, he says. We can stop.

I follow him to two chairs and collapse into mine. You’re going to do this four or five times a day, every day, he says. It is a game with one rule that I have never been great at following: stop before it feels awful. I have to turn the metronome faster and faster, but never so fast that it makes me feel like I’m falling down a flight of stairs. The key is to become intimate with the discomfort without actually stepping into it, he says. I believe in you, he says.

On our way to the exit, Matt pauses. It’s possible that everything you’ve been experiencing is just because of this thing with your eyes. A nasty, disbelieving sound comes out of my throat. He smirks. You’ll believe it when you see it, he says.

 

It’s not even like I set the metronome a little high, just to see what it feels like, although that’s the sort of thing that I would do. I follow the doctor’s orders. I stretch out my arms. My greasy finger taps the phone screen, and the pitter-patter metronome begins.

Five seconds, and the feeling is back. It’s like a rusty hand mixer has been shoved through my skull and into my brain and it is slowly churning the matter around. On top of this feeling are other, worse ones: that someone is using a potato peeler on my eyes, that someone has taken the bound nerves in my spinal cord and stretched them straight out to the moon. All of this only half true, the pain beyond language, beyond what feels like it should be possible for a body to hold. It is a horrible design flaw that human neurology has been hardwired to be able to perceive sensations like these. The corner of the door frame finds my face as I stagger into the bathroom. It knocks me onto my knees. I paw at the rim of the toilet, then pull my body over the cool edge of the tub. My hands claw at my wet face. There is a horrible sound like glass breaking that I realize, eventually, is coming out of my mouth. Sour hours slip away.

Eventually the grip on the hand mixer loosens. I exhale. Still half in a trance, I pull my body into the kitchen. Twenty-four hours have passed like a skip on a record. It is time to do the exercise again.

For the first time, I look my pain in the eye. Yesterday’s feeling wasn’t new; it was just a slightly more saturated version of the same feeling I’ve been having for years. The only really novel thing about it is that, for the first time, I’d been the one to cause it. A neon-letter thought erupts across my insides. This is torture. It would be easier to scrape off all of my skin with one fingernail. It would be easier to find someone that loves me, punch them in the face, and walk away forever. It would be easier to swallow bleach—or mud.

The seconds stretch into minutes. My breath is faint and slow. And then, there is a deep quiet. Against my better judgment, my focus contracts into a pinprick of understanding: there is no way out. The pain had already eclipsed the possibility of a different life. It has swallowed everything around me. I would be a fool to try to avoid it now. What follows is a sudden surfacing of strength, a security of unknown origin, welling up from beyond reason, rational expectation, and hope: all words that dance around the truth of the matter, which is that I am finally ready to let my gurgling desperation swallow me whole. I pull up the metronome. The beat begins.

I lift my arms.

I swivel my head.

Nothing happens. I go for the required fifteen seconds, and then continue for thirty more. I turn the metronome up to the speed of a heartbeat. The hand mixer in my mind starts to whir, but just barely. I stop moving, and it does too. And then, nothing. Silence. And I am standing quietly in a new life.

 

The mechanics are simple enough to seem stupid. During the exercise, the quick jerking of the head causes retinal slip; an error message is then sent to the cerebellum. Fix me! the message says. Rather than being afraid of this error, the brain adapts. It fixes itself. Stable vision is restored. I read paper after paper to try to figure out what’s really happening, but that’s it, it’s that easy. By intentionally creating temporary periods of blur, the brain is forced to try harder. By retearing the muscle, it remembers that it has to heal.

Seeing double takes energy; the body's other systems cut corners in response. The background processing that would otherwise filter sensory input short-circuits; instead of only experiencing the most important sounds, sights, and smells, I hear everything, all of the time. Hearing like this usually only pricks up during fight or flight. My body knows this cue. We're in danger? Okay, we're in danger. It's damaging to stay in this state for very long. The autonomic nervous system, which handles the basic tasks of staying alive—sleeping, eating, continence, pumping blood—can't keep up. Sleep is irregular; digestive cycles stumble and stall; the heart rate skyrockets and plummet at random. I stand up, or I startle, and my heart rate triples, and my nervous system can't bring it back down.

I had been too sick to even recognize that any of this had been occurring. In a matter of days, it all changes. Now I’m sleeping again. I feel hunger and thirst. I no longer pee my pants in public.

It’s like gaining a sixth sense, like what I imagine getting glasses feels like to those with vision worse than my own, those who have slipped from perfection but have been too stubborn to admit to the fact of the blurring world. Sensations that had—for some five hundred days—blurred together become distinct. Standing on the second-story porch off my apartment, looking over the yard’s unmowed grass, limp under the weight of decomposing leaves, I feel a breeze in my hair. I feel the individual follicles as they pull at the back of my neck. There are 175 distinct, nameable nerves in the human body, and each of mine feels suddenly radiant.

I see Matt one more time. All it takes is two visits, and I have graduated from the fancy treatment center and its walls and walls of ferns. After the appointment is over, he emails me.

One last piece of homework—try to push yourself! Set some goals for what you want to be able to do, start working towards them right away.

 

For weeks, I am spellbound. I feel the electric burn of synapses as they fire for what feels like the first time. Things I hadn’t realized I was missing begin to reappear every few minutes (even six, ten, twelve months on, these apparitions will still come on at least once a week): the staccato of the showerhead’s individual streams; the crispness of letters printed in black ink, the way that they stay put on the page. Several times a day I hear a word and the place in my mind where its definition lives snaps like a bra strap under a middle-school boy’s greedy finger. It is unclear whether these are words I am learning for the first time, or whether I had once known them and forgotten; they arrive déjà vu, familiar, threatening, and delightful. Catatonic, mimesis, ungulate, heliotrope, words full of beauty, words that sound like music or sex. I hear two people in conversation and realize that they are talking about separate things—and here, the metacognitive capacity to not only understand each thread, but spot the point of their divergence, to grasp it in my hand and to name it, feels like providence. All of this sparkling awareness of myself, of others, of how I was perceived by others, of how others were perceiving themselves—I had lost it. I’d had no idea. But here it is, the fine-grain texture of the world, re-presenting itself to be hungered after, to be precious about.

Sitting at the kitchen table in the angular, old-gold light of early spring, I feel something rising in me. A tingling starts in the soles of my feet and spreads with the quick intensity of a blush through the rest of my body, the buzzing heat of salvation, a muscular energy, without fear, without neurosis, that I’ve only known in the come-up on hallucinogenic drugs. My chest is expanding and ready to burst. I open the door, and run from it.

I pass by the tall oaks, all hinting towards new leaves, a green skin growing over whatever winter did. There is music playing in every one of my cells, a mob gathering inside of me, circulating like it wants something, wants my generous, thirsting flesh. I feel my feet press against the pavement in small steps even as I become weightless, ready to snip and snap, to flit around like a bag in the breeze. I can't describe what is happening, except to say that people take drugs, join cults, and speak in tongues to have such experiences. I run down to the water and plunge my hands past the foam. The texture of my skin magnifies and contracts in the rivulets. New details seem to explode into being for the very first time.

A few days later, driving over the bay at night during a downpour, I see the blunt sides of buildings scatter across the water drops on my windshield. It is rush hour. The road is a colony of red ants, all of us glowing, all of us inching towards home. Boléro is on the radio. The symphony swells. It is beautiful, I think. The feeling is bigger than my body can hold. The world is newly unbearable. But I am here. I am here to hear it. The lights before me blink off as the car lurches forward. I cross the bridge and drive back onto the land. I exhale.

I have never believed in miracles, but I do believe in this.

That turns out not to be enough to make it stick.

Tags

Health, Disability, Medicine, trauma