The first challenge to publishing an individual, internal account of a traumatic brain injury: it’s invisible. There’s nothing tangible or obvious, no roadmap or guidebook. The journey is inward, and one encounters that unknown territory as a person dependent on light would grasp into a dark abyss with arms outstretched. A brain injury is invisible and yet smackingly immediate like a mischievous ghost wanting to play innumerable tricks on their haunted house’s intruder. As if the body itself and everything familiar within that identifiable territory suddenly turns shapeshifter. Or traitor.
My brain injury started with a mild t-bone collision. “Mild” only in terms of not requiring an ambulance, hospitalization, life support, surgeries, casts, or the many other medical memorabilia I was spared, thanks to the fact that the negligent driver was quickly accelerating from a stop. “Mild” doesn’t refer to the terrifying push into oncoming traffic, the burst tire, the lateral whiplash, or the closed head injury diagnosis that grounded me from a six-month sojourn in Europe a mere ten days before departure. At first my internalized ableism saw this as a full stop in my life’s trajectory, but I’m stumbling through the process of rewriting that biased, misinformed story.
A brain injury is every climate, every geographical phenomenon, every season, every sunken and mountainous city, every remote village, every language of Babel, every mode of transportation; smashed together in one claustrophobic maze of overlapping altitudes and layered textures. All of it uncomfortably intense and inexplicably oppressive. With a brain injury, every micro and macro sensory input punches you in the head like an animated club. Because the brain’s effort to heal itself translates as zero regulation and amplified computation, everything at the same exaggerated volume.
A cloud of cigarette smoke. The screech and hiss of a bus arriving at the curb. A bright sunbeam reflecting off the windows across the street. Singular raindrops tapping your arm, head, back. The flavor of your coffee, plus the heat of it, biting your tongue. This snapshot captures only a few simultaneous things going on when you exit a neighborhood coffee shop, not to mention the dizzying effect of objects in motion within your primary and secondary views. In the time it takes you to read this paragraph, your brain will compartmentalize each sensation with such speed and dexterity that it costs you nothing but a few milliseconds to interpret these typed English characters into linguistic meaning. My injured brain refuses to brush aside insignificant inputs, and pains itself to make sense of minutia in slow succession.
The one then two then three (and how many more?) years of healing have felt far from “mild,” although one would think the sole prescription mild: rest. Imagine going to the Apple store, your sleek and freshly dropped Airbook in hand, then they say to just wait for it to fix itself. Maddening, no? Don’t work, don’t read, don’t travel, don’t learn, don’t use screens, don’t exercise, don’t stress… Stop doing every last activity that defined the dimensions of your life, and relax. Sure.
My neurologist informed me that the saying goes: if you’ve seen one brain injury, you’ve seen one brain injury. While my experience is unique from all the others’, the community of TBI survivors can undoubtedly commiserate about shared symptoms. A symptom is how the brain injury reveals itself from its invisibility cloak, such as headache, dizziness, fatigue, etc. Any whiff of commonality is a breath of fresh air in what’s otherwise an extremely isolating experience.
I’ve reached notable milestones throughout my ongoing pursuit toward a return to “normalcy.” I hate that word. Along the way, repetitive symptoms have arisen in varying levels of intensity. The worst: the most sneaky and subtle. The most difficult: the separation from a sense of Self and identity. The most common: acrid, dense fog amongst neural pathways; absence of clarity, cognitive and otherwise; trying to decipher incomprehensible (yet simple) text messages; fingertip reading like a kindergartner, muttered aloud to attempt to recall the string of words, rewinding over and over to retrace the meaning of an entire sentence; emotions everywhere, out of nowhere, big and deep, erratic and unregulated; feeling tranquilized, but not tranquil; thick throbbing headaches, similar to feeling spun around in nauseating degrees. And goodbye, memory.
How could an unassuming traveler guess that a bruising kiss would crucify their own ego from the body republic (rendered unrecognizable), and hide it hostage within heightened senses? How could a trustworthy steward ever conceive of being gas-lit by their own inner landscape lacking resemblance or familiarity?
It’s a sticky place, this injury. A different kind of sticky than the incessant sweat of Brisbane’s humid summer. My wheels spin and lurch; momentum jerks. Nothing smooth or sailing about it. Adventures away from home are consistently the occasions wherein I fill notebooks with nonstop writing, yet I avoid scribbling the intricate details of these three years and another yesterday with all my might. I don’t want to see it any more than I want to experience it. I know the travel story of this injury; I reside there. But I don’t want to give it shape in permanent records. Ask how it’s been, and I muster quick footwork for a lightning-speed getaway, a sitting duck poised to flight in a snap.
I wish you shared access to my mental capsule of events so you could sit beside me per your viewing request. And we’d hold hands while I avert my gaze from the flicker slideshow projected on pale faded daisy sheets in an anonymous file download of facts. You’d watch intently, then turn, peer at me with awe and appreciation for my resistance to succumb to the void’s beckoning loneliness etched into this invisible injury. You’d solemnly nod in compassionate agreement that one hundred sixty hellish weeks of bearing this _________ is indeed cumbersome – and still, all the while, I packed and repacked to muster miracles as I walked on footing unsure, flinging hope into light shafts wherever shelter opened and kindness appeared amongst unmoored lily pads.
My denied permission to write has incidentally dulled what memory – and memory of memory – could have been recorded in the moment, so now it’s a fickle game of recollection. Recollecting factors of repetitive yet fleeting side effects forces me to sift through mental rucksacks and train trunks to re-collect the journey’s amassed souvenir (“to remember,” en français)…seasonal aromas folded within foreign flora, sharpness of windchill, colorful sunsets, culinary flavors at market, unusual ambulance sirens… Souvenirs take time to coax from their hiding places, sometimes tucked into far cobwebbed corners after years of neglect. Only the most polished anecdotes sit on the obvious shelves, lifted often enough to build a distinct dust imprint, revealing the separation between fondness and forgetfulness.
My jumbled and gapped word bank trails behind in strenuous efforts to maintain a conversation. I wonder if that spaciousness resembles the stuttered consequence of children sniffing jars of glue tucked into their sleeves, the ones who asked for money from drivers at intersections in Nairobi. Tangent: I cringe to recall my preteen naïveté in shamelessly uttering the Swahili word to “welcome” two young Maasai sisters to the safari campsite (where I was the visitor), on property etched into their herd’s feeding grounds. My vocabulary now snags on rock and rubble on its route between my impulse to speak and articulation. It begs for an immediate salve, but instead receives practiced, pitiful tsks with sharp splashes of “…but you look fine!”
A brain injury could visually resemble the heavy cement oratory atop a high hill in Montréal. Its exterior: hundreds of steep, severe stairs cascading downward (a vertigo-inducing mind-fuck). Its interior: a dark, ominous demand for silent reflective contemplation. A few narrow stained glass windows offer barely perceptible splashes of color on the cold, grey floor. For that matter, the terrain of a brain injury might more closely resemble Dante-esque catacombs than share a likeness with any landmark or landscape I’ve traversed throughout four continents. Their depths threaten a deafening rattle of rage, nerves, and riddles to sort. I keep these caverns locked, but they leak.
I wouldn’t describe the prolonged, quaking fear and grief as “mild.” These friendly foes have been annoyingly persistent in my periphery like the wild-hair bearded vagabond who followed my twelve-year-old self on foot through Paris to the Louvre, intermittently blowing into a melodic bird whistle and smirking in disturbing eye contact once I’d identified the sound’s source. They all ignore my evasive maneuvers.
I joke (seriously) that a brain injury places me in a very different time zone than the surrounding world. As evidenced during conversations, my response circuitry is sluggish while everyone else runs on fiber optic. My effort in this molasses air feels glacial among average passerby tailwinds who vault along with extra springs in their step. Every so often, though, the cityscape clocks into my time zone. (What relief the pandemic provided! People stuck at home!) We finally find syncopation for a few beats before their pace of the pendulum rocks ahead again.
As worker bees, theirs is an erratic pace to which I’m not eager to match once I’m fully healed. I had a taste of this time zone during my 2015 trip to Australia and New Zealand. To be. To exist. To allow minutes to mirror hours. Not to compete. Not to get ahead. Not to rush toward the myth of success and satisfaction and instant gratification. Why hold oneself under unnecessary pressure?
Recreation (as in, leisure) is crucial for catching one’s breath, for curiosity, for daydreaming. To remove oneself from oneself and all the trappings of routine, persona, mindset, fixed perspective, and comfortable community. To be. What freedom in anonymity and unrestrained, unscheduled time! Re-creation (as in, forming again) is important for embracing the undone, for immersing in the unfamiliar, for imagining new architecture. We’re often inspired by the unexplored, so let’s not be precious about our one lived identity. Be wild.
Slow and steady became my full-time job; a stark contrast to my previous go-go-go energy. If that’s a gift, the twist was not being able to “make something” of it (as in, “be productive”). However, the prolonged meditative sit with myself has probably been the most arduous work. I’ve had countless moments of feeling foolish, failed, and faulted. Confusions roost: remorseful quagmires of questions unanswered. Many hints to puzzle out, indefinitely.
How will this local wanderer recognize the promised land of recovery? Does it already move amidst this changed wholeness, holistically healing hour by hour, impatiently patient? And what have I noted along this improvised itinerary? Healing takes time. Maybe a long time. And focus. And practice. And intention. Rest is allowed and encouraged.
I’ve been steeped in a travel bundle I never sought, yet I cannot deny the wealth of gifts this injury has offered me. Human bodies are only ever temporarily “abled” and there’s much societal work to be done in the collective mindset…
(to be continued with more details and revisions)