Daily Trojan Magazine
The myth of getting better
My brain damage is permanent. This feeling doesn’t have to be.
By JENSEN MANELSKI
Content warning: This article contains discussions of mental health, disability, suicide and chronic illness.
Disclaimer: Names have been changed to protect the anonymity of those involved.
THE BIG UGLY MONSTER & ME
I have long considered the respectability of others to have a direct relationship with my own degradation — ‘direct’ as in ‘rather than inverse.’ If there is a God-shaped wound in all of us, I’ve staunched mine with scrutiny, which was sold to me as guidance years ago, and, in my modesty, I have behaved accordingly thereafter. I have held and lost the same conviction a mortician might should he be asked to dress a corpse and, later, lay her to rest in his own bed; this is to say that I hadn’t considered my relationship to judgment to be unusual until I became aware of how I’d been encouraged to live with it. I autopsy each word choice, facial expression, vocal tone employed, each sentence one to be examined post-mortem, dissected, jarred. In this way, I am not dissimilar to any other young woman, many of whom I have known to handle their own bone saws, to crack their own sternums, to inspect the carcass of a moment for months, if not years, after a fleeting exchange. This desire to protect oneself from the panoptic culture of criticism we’ve cultivated over decades and centuries and so forth has naturally given rise to what Margaret Atwood once deemed a sort of self-contained voyeurism, and the inquiries of the internal voyeur — all of which ultimately amount to, “What do they think of me, and, selfishly, will I suffer from it?” — are as corrosive and as loathsome as they are universal. What I believe to exclude me from the uniformity of this experience is the manner in which this beast manifests within me, less a foil than a second self. Affectionately, I have styled it with the only title befitting of it: The Big Ugly Monster.
If the presence of the internal voyeur is a matter of self-preservation, it is therefore a matter of fear, of which I possess a flagrant excess. On the left side of my skull, I have a scar several inches long to prove as much, a strip of smooth flesh parting my hair and tracing the juncture of my jaw. This thickened skin conceals the trench from which my voyeur emerged — the abyssal cavern where my left temporal lobe should be. Arguably, the left temporal lobe’s most significant structure, the amygdala, is responsible for processing and responding to emotional stimuli, a role that is infinitely more complicated than any definition could possibly suggest. One of its more principal functions is that of fear conditioning, or the ability to register and react appropriately to fear-inducing stimuli, such as legitimate danger. Notably, mine is in pieces, and thus, somewhere around the age of 10 or 11, I was sentenced to a virtually interminable state of terror. This is where I end and begin.
The remains of my left temporal lobe have been crudely arranged into a Rube Goldberg machine of crossed wires and frayed neurons, a contraption designed to fulfill only the most rudimentary of emotional tasks with the ardor required to untie the Gordian knot. My amygdala’s ceaseless barrage of distress signals renders me both epileptic and profoundly paranoid, like a flare gun; its bullet a boomerang, pyrotechnic accidents abound. Succinctly, my brain attempts to rectify its deficits by means of acute overactivity, and I am caught in its crossfires.
In the aftermath of my first partial seizure last October, it was this that consumed the majority of my freshman year — this and the worst of its effects, which was, of course, the overwhelming feeling of abject disappointment in the face of my inability to overcome it.
My illness and its emotional, physical and existential ramifications had governed me for nearly a decade, my life and my selfhood inextricable from the most dismal of their qualities. My public disposition, personal ethos and spiritual values had been fashioned in the likeness of my greatest enemy, and, nearing what I believed to be the height of my adolescence, I had grown exhausted of them. My frustration was less due to the state of my circumstances and the person created by them — myself — than it was the reception I was sure that self would garner.
Though I was unable to recognize the extent of my brain damage until recently, my alterity has never managed to evade me, and my resulting discomfort has informed every facet of my self-understanding. This was the Big Ugly Monster in motion, the metric with which I assessed myself, the metric with which I assessed others, and what I implicitly believed to be the metric with which others assessed me. The graph of the Big Ugly Monster has two axes, and it reads that the further from me someone or something is, the higher the esteem in which to hold it. I assumed that the public at large had created this scale, or, at the very least, that the public at large had access to it, a sentiment that came to be integral to my reality and to my image of others. This gave my unearthly fear a congeries of targets, such as everyone, everything and all the things they surely thought about me.
Many writers have lamented the egocentrism of self-flagellation, but regardless of the controversy surrounding the practice, for some, it is more or less compulsive. There’s a belief inherent to this latent logic that the development of emotional resistance is a scientific process, reproducible, rational and reliable; that, like a vaccination, a dose of rejection — its administration controlled by its receiver, its contents controlled by them, too — is able to strengthen our tolerance for the contempt we could very well engender in others. The validity of this belief I don’t care to debate, but its repercussions are evident: Our indulgence in it fortifies another, more insidious belief, that of our capacity to control how we’re thought of at all. In our desperation to achieve the futile aspiration of influencing others’ perceptions of us, we are driven to construct an identity that facilitates this pursuit, and this desire therefore directs the evolution of our personhood. We are both ourselves and not, both realized and unrealized.
The intensity of my fear could be considered remarkable, but I believe its visibility is perhaps its only distinguishable trait. For most, fear is far more sinister, deceptively inactive, unrestricted and just under the surface. It is stifling, smothering and as inconspicuous as it is obligatory. The solitude innate to fear is what makes it so difficult to surmount: its inaccessibility, its loneliness, its displacement. For those affected by disability, this solitude can be exceptionally crushing, a solitude touted and trumpeted in spite of ourselves.
Prior to a few more recent revelations, my fear, ever-present and ever-mounting, was my mighty throughline, my stalwart anchor, my sole protector. I felt free to live in fear, safely contained in the fact that I could do nothing of value and thus nothing of consequence. I was anathematic to my own doctrine, a long-running resident of Dante’s first circle, a thief stealing time in Limbo. There was a pendulum I watched and waited for, one that oscillated between two futures. In one, I died at the hand of a fictitious, eventual, unattainable conformity, transmuted by an intensifying pressure, as pliable as carbon and finally well. In the other, I died and left nothing to improve. These were my options, few as they were until I made my list.
(Jensen Manelski / Daily Trojan)
LIST OF THINGS THAT ARE TRUE:
1. MY BRAIN TUMOR WILL NEVER RECUR.
1A. THE ORACLE OF FINSBURY PARK.
We would generally assume that we live in alignment with our self-concept. I argue, however, that we cannot survive knowing ourselves in our totality, and living in alignment with self-concept would be contingent on as much. Truth here is the cyanide in an apple seed; in order to stomach ourselves, we confront our emotional anatomy with apprehension, precision and an excuse to pursue nothing further at the ready. We see ourselves as clearly as we would see the face of God — completely and entirely uncomprehending, save maybe an impression as meaningful as a Rorschach inkblot.
This is our paradox, our hall of mirrors, our gallery of distorted reflections, a psychological phenomenon that provokes within us contradictions and curiosities, both endearing and repellent. At the risk of incriminating myself, I will list a few of my own foibles.
Despite my wish to impose as little as possible when among friends, I am a chronic nail biter, and the floors of their apartments are littered with my splinterings. I am sure to keep many of my necessities in great order years past their due — computers, cabinet spices, companions — but no matter the weather, the event or the degree of formality, I invariably abuse the same pair of shoes each and every day until their soles are worn through, which usually takes half a year or less. I am unable to rewatch my favorite movie. I am loneliest when among my dearest friends and, while passionate, I am indifferent to my passion’s outcome, content with fruitless labor.
I am similarly contradictory in my approach to rationality. The great and mythic line of reasoning is a steel beam, and I am taking my lunch atop a skyscraper. My feet dangle from atop the painfully aware and into the expanse of the painfully detached.
This is the nature of transient psychosis: to be both worldly and naive, both discerning and undiscerning, both present and absent in the space one occupies, to be misaligned. In psychiatry, this is referred to as “double bookkeeping,” the experience of existing within a psychotic reality concurrent with existing within a shared reality. A failure to maintain this process is what I refer to as “slipping,” my sweetheart’s sobriquet for what is fundamentally a monumental state of psychic equivalence. This is to lose one’s foothold on the edge of a rabbit hole.
My episodes of transient psychosis, a feature of my long-debated schizophrenic spectrum disorder, are the most dire of the more immutable consequences of my brain damage. As the body’s most unyielding defense, the brain is inclined to fill in its own gaps. When incapable of gathering the information required to make its decisions, whether they be conscious or unconscious, the brain will overcompensate. My own brain, unable to deduce the immateriality of my seizure-induced fear responses, fabricates targets upon which to focus my panic. These fabricated targets range from obsessive-compulsive thinking to delusions, and, like a starving dog, they will eat the necrose and the noxious, indiscriminately devouring the slop of confirmation bias.
At 15, this manifested as my confidence that I would be publicly humiliated at any given opportunity. At 17, it manifested as my confidence that my high school friends despised me. At 18, in the throes of London’s drear and autumn’s dread, a psychic unintentionally ruined my life.
Ophelia was my dorm mate at the student housing complex I lived in during my semester abroad. Baby-faced Ophelia, with the eyes of a doe and the closet of Hannah Montana, was too big for her body and stole space to compensate. She was delicately constructed, sweet-looking and feminine, quiet and ordinarily bashful. My dorm mates and I shared a kitchen, so most nights, we ate together.
We were drinking 6-pound wine from Marks & Spencer at our plastic fold-up dinner table when Ophelia, sufficiently drunk enough, declared that she was ready to provide each of us with a real-life psychic reading. Early on, we’d all become convinced Ophelia was connected to some otherworldly being after she correctly predicted our friend’s motherland, the great city of San Diego. It had been a strange seven weeks, the best of my life, and I was open, unmade, unraveled by hope, as hope is wont to do. This is the only explanation I can offer for the ease of my persuasion. Ask me to find “gullible” on the ceiling.
Ophelia, guided by heavenly wisdom, confessed to us many truths that night. One among us would marry rich. Another needed a nose job. To me, she declared that I was born cursed and would always be, as I had made a deal with God: my misery in exchange for a great cosmic reward. A stipulation of this deal was that my tumor would recur. Should I not know of its existence by May 4, 2024, I would die.
One of the only bearable aspects of long-term, potentially fatal illness is that one’s physical deterioration typically has a rapid onset, usually after a period of relatively decent health. Until my junior year of high school, my tumor only somewhat impeded my quality of life, but my subsequent health spiral took only six months to render me useless. This moment of wellness is the dying man’s raison d’être, our vital, galvanizing unknowing. Waiting to die is devastation at its most plain, but waiting to live has a feverish feeling, a fight within it. Its ache is only a result.
Ophelia’s divine proclamation stripped me of the gift of uncertainty, the genesis of wanting, wishing and hoping at all. These actions, hardly conscious, are our placebo painkillers, our happiness-on-credit. A dream is a desire, but it is also a direction, flimsy and thin but blessedly self-determined. These desires can only be embraced when accompanied by the illusion of control, the very property that we are deprived of most basically, a reality most apparent when faced with death. If hope had opened a door within me — hope for a future, for happiness, for something I hadn’t thought to want — this night, it was surely shut.
After an initial three days of hysteria, I tucked away her predictions. Perhaps, I thought to myself, I would always be miserable. Perhaps I had spoken to God as Ophelia proposed. Perhaps I had lost the scissor to the gun, but I was then only as doomed as anyone, only as doomed as the next star-crossed lover, as the next Polynices or Porcia, as the next teenager jumping a battery-powered palisade, victims of human error, our own more than anyone else’s. I was not dismissive of her words, but I was apathetic to them. I carried on.
The question of why I could not reject Ophelia’s prophecy outright I’ve yet to answer, but allow me to speculate.
Much of me attributes her influence to my schizotypal thinking, which I do advise should not be discounted, but a quieter voice can admit that I had not yet adapted to a world in which my tumor would not kill me, nor did I have any idea how to.
My illness had presided over my life since childhood, a specter in my periphery. It still seemed to me unthinkable that I could be free of it, and, more than that, it seemed to me that I was not yet free of it at all, this dysfunction that each day I could not conquer. Aphasic, my words failed me; anhedonic, my emotion failed me; afraid, as always, I failed myself. A life wherein this did not change was to me unworthy of continuation, no matter how I scrambled to assure myself otherwise, and should this attrition persist, then death was the outcome I most preferred, death in the stead of this unabating defeat. It was the promise of change that I clung to, and until this change came to me, I could come to nothing. I was static, immobilized, and, to me, that was almost the same as going back, as having the potential to undo it all. If I was wholly healed, then I was as good as untouched. To be scarred by it was to never escape it.
A little less than a year later, I had my first absence seizure. I was walking in the middle of a roadway, left myself abruptly and returned only when a car nearly clipped me. This is characteristic of temporal lobe epilepsy, as were the auras, the loss of balance, the tingling and the tachycardia, but it was not characteristic of me. I had never had a seizure, not in all my years of infirmity. The epilepsy itself I could take in stride, but its late onset, three years overdue, was utterly catastrophic, and I assumed, not unreasonably, that my tumor had recurred.
Each seizure was a matchstick, each fright a little flame. Ophelia’s prophecy burned in my memory, brighter and brighter the longer we tested, the longer I waited, the more often I stayed inside. My terror mounted, fueled by my obsessive compulsion, my unending anxieties, my schizophrenic thinking. By the time it was confirmed that my brain scans exhibited no new deviations, I no longer could bring myself to believe my doctors, my MRI releases, my logic. I believed Ophelia, the mouth of God, and God said I was dying.
No case of insanity is without a foundation of good sense. Ophelia’s prophecy took hold of me at the convergence of several of my most oppressive fears and, expectedly, my perennial amygdalar misfiring, a dismal amalgamation inevitably destined to undermine me. I feared death, and the prophecy declared I would die. I feared life, and the prophecy declared I would lose it. I feared what differentiated me from others, and the prophecy declares that these differences are immutable, foreordained and patent in their presentation. What most concerned me about her edict was what it implied about my quality of life. My north-star-need was community. If I would always be short of sane, I would always be short of human.
We dance on a pinhead trying to define happiness, but if you define it physiologically, I am hard-pressed to reach it. I live inside, where no one else does, and outside I am slick and slippery, scattered and split. I was convinced that until I could prevail over my disability, I would be denied access to a shared humanity, and similarly convinced that everyone else knew I’d already been denied. How could they not? I felt it all like a stab wound, bleeding out and onto me. Our shared humanity being the meaning of our lives, I thus believed I had been denied a meaning at all. I felt watched, judged, as though I was on trial, submitting to the jury evidence of my compatibility with life, each moral or social failing a point against me. Only so much of this was clear to me, and so my subconscious, all too fallible, worked to fill my gaps.
I nearly collapsed under the weight of the months that followed. The end began with my birthday, but I won’t tell you how.
(Jensen Manelski / Daily Trojan)
1B. MY NO GOOD, VERY BAD BIRTHDAY.
My prophecy was set into motion two days before my twentieth birthday. In high-anxiety situations, such as starting college, I tend to have an influx of intrusive thoughts, which metamorphosed over time into what is classified as a persecutory delusion. My “prophecy day” was a precipice, the Everest of my anxieties, and as asinine as it may appear, I lost my balance. I became aware of my situation shortly after. There is little more to say beyond “I’m sorry,” an apology I issue to a handful of loved ones.
Having lived entrenched within it for some time now, I can tell you this surely. There is no terror greater than that that grips you when faced with the harrowing realization that you are powerless over yourself, the only thing you are entitled to. The rest is illusory, tissue paper, stuffing, abstractions, what we treat as truth to disentangle the immeasurable threads of corporeal existence, these things and concepts and people we trust. The cynics, the nihilists, the atheists and the cognitively dissonant cannot admit this unfortunate ontological truth: We, as men, are held together by gum and faith. I was left with neither.
Psychosis is culturally considered to be the consummate example of insanity, but permit me to appeal to your pathos. I profess that the state of psychosis is not itself insanity, but, rather, that it drives you to it. I had listened to the sound of my own heartbeat and realized that the steady drum had been tinnitus all along. I felt like an exit wound. I found I missed myself, having been gone all this time.
1C. DR. COSMO KALE DOES NOT RECEIVE A DIAGNOSIS.
I went to a Billy Joel concert, covered up a tattoo, worked briefly as a television production assistant, and scanned my brain yet again in the three weeks preceding the start of June. A week after my MRI, I received the results of my tests over Zoom in the dark of my friend’s bedroom, my back to the wall in more ways than one. Regardless of my appointment, I was participating in a murder mystery party, committed to my part as Austrian astrophysicist Dr. Cosmo Kale. I kept the lights off to prevent my doctors from seeing the fake mustache I had scribbled on my upper lip.
My current neurologist is a world-class expert in his field, and thus he is mostly uninterested in me despite my anomalous brain, which has at times been called the brain of a prey animal. His nonchalance, while at times worrying, is ultimately refreshing, an anomaly in and of itself. He provided me with my scans accompanied by a multicolored, neon infographic: “51% of Your Brain Activity is Abnormal.” His practice is impeccable, but his bedside manner could use work.
I had surmised that my health’s swift plummet would be attributed to some external factor, but no luck. The contents of my scans had not varied since our last visit. I was as healthy as I would ever be. In my ears, I heard a sound cannon, all 160 decibels. I was threadbare and damaged and not healthy at all.
I cannot take medication to mitigate the effects of my brain damage, as my brain chemistry is unpredictable. The brain’s ever-preternatural neuroplasticity has reset me in the years since my craniotomy; medication could very well do me no good and, more likely, could do me great harm. External management is dangerous, but my episodes are not. I am not violent, I can mollify myself and, while impaired, I am not impaired enough.
I asked questions. I was answered. I watched my face in the black of my computer screen, my edges lit by the dim yellow of a nightstand’s lamp light. I guess I had to know that I was there.
If the interim was off-limits, my Limbo was inalterable, then the matter of when I will heal emerged at the forefront. I was poised to run and paralyzed, a beat away from my cue, where I stood in the wings. My life had to begin eventually. My brain had to heal at some point. This had to end one way or another.
My doctor is a man of wells, but never umms. My brain will never heal, but I am, at least, eligible for — and say this ten times fast — an amygdalohippocampectomy. For just another year of convalescence, I may never seize again.
2. I MAY NEVER GET BETTER.
2A. I WIN, THEREFORE I AM.
The first several weeks of my summer were wasted lamely fending off suicidality and existential fatigue. I had understood, on some plane crossing that Big Ugly graph, that my fear was my priority, that its appeasement was my most essential need, the bottom of personal Maslow’s hierarchy. That disunion so constitutive of my survival, that potent misalignment I’d relied on, allowed me to exist in a space suspended wherein everything I was and everything I would be could very well have nothing in common and still had a sense of fluidity. We all have a lie we favor over the truth. This had always been mine.
I knew well that achievement was out of the question when my fear consumed me as it did. Achievement, here, I define not only as material success, but the makings of a life itself, fulfillment and friendship and that happiness that seemed to escape from me so easily. I was to blame, but I didn’t know why.
We resent what opposes us, but we are the most elusive and most vile of our adversaries. With keen awareness of our tender underbellies, however unacknowledged they may go, we are the center and the centrifugal force, the army and the enemy. I had gutted myself with the slip of a knife, a brief miscalculation, and now I knew: I was never getting better.
Getting better was achievement embodied. Getting better was the portrait of a person worth being, a still life worth living. Getting better was the prerequisite of the human experience, the baseline upon which you build something to stay for, a hypothesis that proposed I did not have to be afraid nor alone, not always, not for nothing. I could live when I could string sentences together without frustration. I could live when my idiosyncrasies did not enshroud what redeemed me. I could live when I wasn’t halfway between worlds, when I was grounded enough to no longer have to press against that film between reality and me. I could live when I could be happy, when my amygdala allowed for it. I could live when I was well, and I could live then only.
My resolve was a capitol collapsed, my terrorists homegrown, their pipe bombs assembled in two-car garages and planted in the tunnels drilled between my axons. My amygdala certainly has the appearance of a thing imploded. See it in monochrome, and portions of its haloed remains retain the fleshy appearance of uterine lining, or backwash, or pulled pork — disconnected, sinewy, sensorily deprived in the dark of me. And it is me. It’s all mine, and I am the terrorist, and I am the capitol, and I did it all. I was the accused and the judge and the jury at that trial, the one I alone was holding, the relentless prosecutor and the weakening defense, the executioner letting loose the blade of the guillotine, and, of course, as always, the man entrapped by the pillory.
After a week or two of nothing, in an effort to do anything, I made my list.
2B. THE DYING MAN’S GUIDE TO LIVING WITH YOURSELF.
When I was in high school, still ill, I wrote a list called “The Dying Man’s Guide to Living with Yourself.” It was a list of things I wanted to do, shows I wanted to watch, books I wanted to read, songs I wanted to listen to, all the sorts of things that go into filling your days and making them meaningful, and I crafted it for weeks, a compilation of recommendations and personal whims. There are 302 books alone on this list, and I’ve read maybe ten of them since.
The most difficult aspect of wanting is the ambiguity surrounding “wanting it enough.” There’s an essay by Tim Kreider I love called “The Summer That Never Was,” a eulogy for a trip to Iceland he never took and a commemoration of the experiences he had instead. Toward the end of the essay, he writes, “The life that I ended up with, much as I complain about it, was pretty much with the one I chose. And my dissatisfactions with it are really with my own character, with my hesitation and timidity.”
This essay has stuck with me in the years since I read it, largely because I know Krieder’s conclusion to be true. As a teenager, there was just enough apathy in me to nullify my wanting, to make blatant the transparency of it. “Wanting it enough” is really a matter of being able to see your wish realized in your mind’s eye; if you can’t commit yourself to the idea of it, it’s no better than a fleeting thought. I can write the names of three hundred books, but reading them was an impossibility; intangible, I thought, for purely practical reasons. I had never truly internalized the will to try.
After my episode, I returned to my list, desperate to wring it of wisdom in the wake of the knowledge that I had not yet arrived at its titular intent. I understood, then, that my passivity had been the nucleus of my impediments, my repression and reticence to remediate that which had weakened me. This reservation stemmed from an unease I felt when aiming to identify the traps I had been so ensnared by, as though their identification would be the thing to make their domination of me concrete.
This process of identification was thus the first of my imperatives, made all so difficult by that misalignment I had relied upon. I knew where I was affected by my deficits and how I was affected by my deficits, but, like a tongue over a missing tooth, when I raised a finger to touch it, I found myself shy of the truth. My paranoia was the easiest of the traps to identify. As one would expect, I started with it.
I was startled by how effortlessly I had lost myself. For all of my obsessive compulsive rituals, for all of my magical thoughts, I had, believe it or not, been led largely by reason nonetheless. I knew what I had perceived had not been true. Even when afflicted by my episode, I knew it still. I was inclined to blame my illness, but my obsession with my own neurology had made even that answer difficult to accept. There is no madness that the practice of good sense cannot master. I had long been mastering mine, but it became clear I was now out of control.
Control is where I started. I made a second list.
I called this list the “List of Things That Are True,” as we often need reminders of them. It is a list of 20 tenets I have since made my religion, my handbook, my owner’s manual. In order to write it, I first had to deconstruct, piece my piece, my habitual thinking, its origins, and the beliefs and histories that had driven it. The list began with simple, empirical facts. 1. My brain tumor will never recur. 2. I may never get better. Then came the things I was committed to believing, those wishes I endeavored to realize. 3. The most important quality of my life is that it’s mine. The fourth tenet, the most difficult, was this: The world I see through my eyes is only as real as the world everyone else sees through their own. Both theirs and mine have their respective elements incongruent with the truth.
This base understanding of perspective, I understood, was what I had stumbled over all my life. The idea had been ingrained in me for as long as I’d known what perspective was, as foundational as “treat people with kindness” or “play fair,” but nevertheless, as so many foundational principles are, this position on the matter felt inadequate when addressing my own situation. Wasn’t my perception the very thing that had set me apart, functionally broken, irreparable? My continued sanity would be reliant upon my faith in my reality, its solidification by means of conviction, but would I be convinced by a fabric of falsehoods? My doubt in this regard grew and grew, until everything was false, until I was false, a false person with a false perspective. I was on some other side of “human.”
I found that the root of my behavior lay at that enigmatic self-concept I so coveted. The thread of it was strained taut from tension, stretched tight from where it lay on the Big Ugly Graph, connecting the points of me. Each point on this graph, I discovered, represented where I stood in relation to that ghastly classification of “Others.” The points themselves elucidated only what I was not. What I was had no place in what was right.
Of course I felt stretched across planes and worlds and axes. I wasn’t on the graph I’d built. I hadn’t left room for myself. My distrust, my insecurity, my fear had excluded me from my understanding of humanity. This was the calamitous denouement of my emotional undoing: I had rendered myself nothing at all.
The conversation surrounding disability has been focused for so long on the will to overcome disability. It’s accepted universally, culturally and socially, that disability itself lessens the worth of a life, and the great, feel-good success stories we all indulge in — myself included — often promote this idea. The paralyzed man stands again. The child hears their mother’s voice for the first time. A colorblind woman sees purple. We celebrate them as they inch toward normality, a great feat that reattaches them to the collective. This makes their life just as meaningful as any other. Without these abilities, there is an automatic presumption of a deficiency. These presumed deficiencies, as they would, lead to a debilitating shame. “Getting better” was not learning to live with who I was. It was learning to be someone else.
My shame had been ravenous, its unrelenting appetite only satiated by my intuition, my muscle memory, the most primeval exercise of free will. Shame did not motivate me as my guilt might. Shame is the spawn of fear, its inexorable derivative, and in an effort to hide from it, I had hidden from life. All these years, I’d been so busy trying to become someone, a natural someone, that I’d declined the opportunity to. I wanted to live. It was what I had always wanted. My chief concern was whether or not I could if I couldn’t get better.
I needed to pivot. I needed my own ideal, my own version of success, an interiority that my own burgeoning identity was a component of. I was fighting what I was at the detriment of who I was. If I couldn’t exploit life as others would, if I would live forever afraid, forever seizing, forever separate, then I couldn’t at all rely on the ideas of others. Their baseline would never align with mine. I needed to create my own. I needed a list, and so I wrote one. The only issue with this approach was that I had no idea how to implement my own doctrine. Thus, I did what anyone would do when confronted with a great and overwhelming truth.
I distracted myself.
I spent most of my days killing time, filling this space I’d hollowed with whatever could fit. There were many things I hadn’t yet done, and so my best friend Juliet and I resolved to do them, for no other reason than having absolutely nothing else to do.
Boiling in the dense humidity of a Florida summer, I attempted to learn how to ride a bike in my obscenely long driveway. Within an hour, sweat had saturated the cuffs of my socks so thoroughly that I felt it dripping between my toes. I nearly collided headfirst into Juliet’s white 2019 Volkswagen Jetta, and given how many times I tumbled off of the thing, I am surprised I left with my shins still intact, though I must confess it was only just barely. In case you were wondering, I still cannot ride.
I went boogie boarding in the Fort Pierce Inlet as Juliet surfed. On several occasions, I nearly struck small children on the drift back to shore. I swallowed sand, coughed it out, and lay on my back in the cool saltwater underneath the blistering sun, listening to the sound of the waves as they rose up and out of my ears, that familiar spatter of a meandering tide on my face and neck.
Juliet and I, tired of chain restaurants, set out to try as many cafes as we could find in the area, which once took us as far out as Melbourne, over an hour from our hometown. Our favorite was a modest coffee shop downtown fitted with honey-sweetened matcha, brilliant almond scones and a hit-or-miss blended chocolate peppermint drink. The chairs were mismatched, wood and felt in equal measure, the tables were worn, and despite our many visits, the pretty, tattooed barista did not seem to recognize us. There was a sofa in the middle of its lone room that interrupted the beachy, laid-back atmosphere with a feeling reminiscent of that bed-and-breakfast breed of hospitality. Older women, their children grown up and far away, would make conversation with me in line from time to time. No one has more to teach you than a stranger with a voice.
I teared up during “Inside Out 2.” I began to work out three days a week. Though I’m still not sure about my form, I will never give anyone the opportunity to comment on it, thank you very much. I took myself to Barnes & Noble and bought myself five or six books I may never read. As small townies do, Juliet and I went to Target for no good reason, mostly to peruse their LEGO sets, which did not change nearly as much as we figured they would. There was a “Star Wars” Mos Eisley Cantina building set I never did acquire, but months later, I’m still thinking about it.
I drove the same route with my mother as I always have, smooth tires on a smooth road, the highway and the ocean rolling in the rear view. When I was sick, we drove this route a hundred times, and I would cry and cry.
Juliet and I talked about everything and nothing, break-ups and make-ups, politics and the ethics of assassinations, with a careful implicit avoidance of anything high school. We went to thrift stores to try things on and leave. I was tempted by a needlepoint corset of cats in Renaissance-era clothing, but it was something like a hundred dollars, which felt excessive. One resale shop we visited was wall-to-wall with headless dolls.
I did all of these things, and my amygdala still misfired. I still lost my train of thought more often than not. My seizure activity continued, and my short-term medication still left me unable to stand in the hours before I could take it again. I still wrestled with the thought of spectators, I still feared malls and city streets, and I would become tremendously sad at odd hours. Many days I could do nothing but stare. I did all of these things, and I didn’t get better, and, unequivocally, I was living anyway.
Living with a dysfunctional amygdala is living with the unflagging feeling that you’ve just been woken by a nightmare; the subject of it may have already slipped from your mind, but the disquietude it evoked remains. It’s pins and needles in a phantom limb. It’s a window shuttering when no one else is home. The level of emotional discomfort I operate with each day is difficult for others to reach at their worst, and, in all likelihood, it will remain so. I wear it on me, a vertical scar from my ear to my cheekbone, because I am scarred by it. I always will be.
I have lived with my hair down, with my scar and self carefully concealed, and I have lived with my hair up, issuing preemptive apologies for my dissimilitude. Despite their seemingly oppositional approaches, they are one in the same, circumstances driven solely by an excess of shame, that warped mirror, that distorted reflection. I had deified my fear, my shame in kind, the queen and the rook on the same board where I was only a pawn. They were linked, locked, charms on a mobile spinning within me. Innermost was the motivator of my misery.
My shame regarding my disability was so profound that my definition of humanity had ceased to include me. Recentering myself in my understanding of conceptual humanity, or at least fitting myself somewhere inside of it, was a byproduct of practicing personhood, but decentering myself in the lives of others proved to be equally essential. Somewhere during my battle with the perceptions of others, I began to act in compliance with the belief that the world was my witness.
There is an intrinsic part of me that will always deny that I am free of scrutiny, mostly because I’m not. What I forgot was that I did not have to be. My fear of scrutiny was the direct result of my fear of rejection by this imaginary, able-bodied collective. Whether I would or I wouldn’t be rejected ceased to be a cardinal question with the shift of a single point on my Big Ugly Graph: my want to be.
We would assume that we should all be individually defined in relation to others, and, on some level, we should. We exist in relation to each other. The issue arises when we narrow “others” into a categorical ideal, when the wheat is separated from our personal cultural chaff, when all that’s left is what we view as the peak or the pinnacle of that collective. Not only is this scope parochial and dangerous, but it’s also ineffective. It leaves you blind to your own potential and to the potential of others, rendering you uncreative, unchanging, incapable of evolution. The more you allow yourself to factor into your idea of a life worth your while, the more opportunities you have to create one. If you design yourself to be digestible, you will live and die in the bowels of the human experience.
At the table with Ophelia, with my red wine and my red eyes, I asked Ophelia why suicide was a non-option — a genuine inquiry. There were so many things I would never have. Wellness, first of all, and all that could only exist in agreement with it. The spontaneity, the freedom, the frivolity of self-determinism, the love and the laughter that felt so out of reach. These moments were happening in places I cannot go for people who would not want me there. I wanted to strip life of its skins, to bleed it dry, but I was unarmed. She reiterated the terms of my deal, but this arrangement I’d made meant little to me. What had I known? I wanted something beautiful, something good, and I wanted it to happen to me.
How terribly selfish.
This revelation, nearly religious, ate me whole in my bedroom on a weeknight in July, just one of many, just one alone. My envy and my impotence did not direct my actions toward others, not like my fear did, but they were there nonetheless, simmering beneath the surface. I resented no one else for their successes, but this did not absolve me of my struggle to revel in them. Why did I have to feel it in order to find joy in it? Why was there not enough joy in my living with others, in loving them?
I had felt so removed from a collective because I had never adopted a perspective that lived in accordance with the concept. These emulations, this pretend competition, my own or the world’s, were antithetical to the community I so craved. These things that I swore made others human — social ease, grit and will, a body that obeyed them — were the things I had to have, but I forgot in this nebulosity the most principal among them: the wonder, the curiosity, my palpable, true interest in the mechanics of the damn thing.
I thought I had discovered it all, broken down all of the parts of life that make it appealing and sought to Frankenstein my way into true fulfillment, a turnstile with a card access, but this ignorance and arrogance had only distanced me further from my goal.
The concentration of my attention had always been this misty, amorphous “other people,” but there had always been an addendum: other people and me. This is why I created the Big Ugly Graph, the graph of other people, the graph I insisted upon finding a place within. I had forgotten the revival of observation, of chosen empathy and unreciprocated love, these presents in brown paper packaging, unassuming as they are.
We are observers, through us and out the other side, people watchers, havers of proxies and enjoyers of spectacle. We watch the faces of strangers on trains, and we imagine their lives, their stories, we write their days in our heads and hope for the best. We eavesdrop on conversations, and it makes our afternoons. We create art to create others, to make model humanities, microcosmic versions of ourselves in every situation, every environment, in 2D and 3D, in worlds of monsters and magic and in every shade of gray. Life is watching. And who else gets to say they’ve seen what I’ve seen? Who else gets to say they see the world at my fractured, tilted, singular angle?
I once had been fascinated by living, but where it did not benefit me, it had stopped stimulating me. I didn’t have to be a part of something to find it engaging, to find it beautiful, for it to change me, to be imbued by it. I was so busy grieving a life I’d never have, I had lost the one I lived. I did not have to create a life worth living through struggle and strife and the denial of myself. I hadn’t had to create a life worth living at all. If I’d had the eyes to see it, I would have known I’d always one. It had been right in front of me, playing out. Life was worthwhile when I was not living it.
I memorized Juliet, the coffee shop, the strangers and the stories. James and I went antiquing in his hometown, the first time I ever visited, and I made him read this essay, the very first draft. Dawn and Eleanor threw a “Twilight”-themed birthday party, and I printed and hung the photos I took that night on my walls, so large that they are the constant subject of commentary. I told Ronan about my health, and my most insouciant friend, brawny and blase as he is, put his car in park to ask me if I was alright. He only drove again when I promised him I was. My older sister came to visit. I let my cat sleep in my room.
Everything was there again, in front of me, and I was there, really there, really here, and then I knew. The world had never been my witness. I was witness to the world.
(Jensen Manelski / Daily Trojan)
2C. OCEANIC FEELING.
I have been told twice, by two separate men, that they could not survive being me, that it would make them too miserable. This is not comforting, nor is it kind, but I never felt that it wasn’t true for them. The worst thing to be, they believed, is unable to get better. It’s the reason most commonly cited for the validity of suicide, for our resignation to tragedy, for our tolerance for stagnation, for loss. Nothing could be done, they say. They were never going to get better. I am never going to get better, but that does not mean there is nothing to be done.
Living while ill is a Sisyphean undertaking. However, I argue that living while alive is a Sisyphean undertaking. We reject it, but I believe that deep down, we all know what the meaning of life is. It’s so large that we all tend to forget it has a shape, but it’s there, formless as it may be. Its indefinite ending is the thing that rubs us raw, us creatures of order and reason and control, for the goal of life, its true objective, is to survive it. We do until we can’t, an inescapable resolution. I could never protect myself from the sword of life. I had been born to fall on it. Out of respect for my destiny, I will lower the shield. I’ll be afraid to do it, but that’s all I’ll be — afraid, just another feeling, another shade of this human condition.
In the aftermath of my very quiet, boring, simple learning, I felt, despite myself, somewhat stupid. There was the very plain and unfortunate matter of having been nearly single-handedly responsible for all of my life’s most awful things, which was certainly a point of contention I held with myself. I was the scourge of this that had plagued me, the source of my illness and the artisan that had crafted my maladaptive behaviors in response to it. I had given myself permission to hold myself accountable for all the bad, but I’d yet to allow myself to honor my good.
The compassion my friends have for me I find unfathomable. I am unsure what qualities of mine warrant love or loyalty, and I am, frankly, deeply uncomfortable with the concepts. I record my mistakes and miseries in books I keep meticulously, and I announce them to my colleagues and company like end-of-quarter reports to dissuade them from investing in me. There is a sensation under my skin, a sixth sense that cautions me against inadvertent deception, which I feel I am prone to because I am clearly at fault for everything, all the time.
I had accepted this mentality in spite of my friends and our togetherness, which I came to see as disrespecting them, regardless of its pre-existence or indelible legacy. They were — they are — the manifestation of this distant wish, this mythological pantheon, my community. Its silhouette was unrecognizable in such close proximity to me. Some days I feel nearly nothing, but I always know they love me, however inexplicable. This is my greatest triumph, my entelechy. My joy may not always be a feeling, but it is always my choice.
I have internalized this feeling of otherness all my life, dogmatic in my adamant, unwavering belief in it. I sought to create a self that could be understood, operating according to the misconception that their understanding of me would lead to an affinity for me or a sense of empathy for my plight. I feared emotional intimacy, and I craved it all the same, a repetitious misalignment that had fragmented me. If they were close to me, they would be repulsed by my defects. If they were far from me, they would be without the context necessary to empathize with my condition. Love for me would be contingent upon the other party’s comprehension of my metaphysical, inborn error, and it could not be sincere without those deficiencies at the forefront of their image of me.
I had yearned for understanding, but understanding, that supposition, that prayer, is not acceptance, nor does it foster it. Understanding is hard-earned and fickle, but acceptance is absolute, true-blue, honesty, both intentional and alarmingly easy. Acceptance isn’t dependent upon understanding, but understanding, pure and perfect, can only be achieved with acceptance at its side. I am accepted, if only by a few, if only for a little while, and the truth is, I may never feel as though I am. Maybe I am so bad and so wrong, so other and so strange, but I trust they’re wise enough to overcome my pretense. In the meantime, I will let them love me, and I will let them know me, and I will hope that one begets the other.
I am the author of my poor character, my poor health, my snaggletooth and my temper. I am just as equally the author of my talents, my will, my resilience and my forgiveness. I am, too, the inventor of this great love, however accidental. The engine of my life I built myself. If I must be draped in the cloth of my misfortune, I too can wear the fibers of my victories. I am dressed, then, as myself. There is absolution in my humanity. It redeems me. If it looks different to yours, I advise you to invert it, and you may find they look the same. For all the mistakes you may make, for all your displacements and your failings and your grief, there is absolution in yours. You are together and alone, surrounded and distinct. Where we choose to see the positive in ourselves, we begin to recognize it in others.
Each of us inherits the birthright of becoming somebody. You are a collection of encounters and responses, a limitless strata of loves, of losses, of likes and dislikes and of rubs-you-the-wrong-ways, where-were-you-when-this-happeneds, and do-we-really-believe-thats. You are prudent and naïve, big in some rooms and small in others, a Matryoshka, buried and breaking the surface. Curation is a process, not a choice. Steal what’s yours, leave what isn’t. Create the place where you should be, even if only inside yourself.
I had escaped so deeply into the idea that I was no one, I neglected to examine whether or not this was a hope or a truth. No one, referential, liminal, was — though I resented it — the safest thing I could be. I feared the weight of being, the burden of possibility. I still do. Nevertheless, I can bear it. It was a new, clandestine divulgence, a whisper beneath my breath, and yet it still felt like remembering.
As I explained to her my transient psychosis in our living room, my sister asked me what I knew about quantum mechanics. I knew very little. She informed me that the theory of quantum mechanics relies on the presumption that an electron can only be known to exist once it’s seen, once it’s caught. If it hasn’t been fixed, the electron is anywhere, nowhere, everywhere.
“I think you’re like a quantum electron,” she said. “Everywhere you are, you’ve already been before.”
How beautiful it is to be everywhere. How wonderful it is to know it.
3. THE MOST IMPORTANT QUALITY OF MY LIFE IS THAT IT’S MINE.
3A. YOSEMITE, UNIVERSE
In July, I went camping in Yosemite National Park with three of my friends. We hiked fifteen miles, narrowly escaped a bear and aided in the retrieval of a domestic cat that had slipped out of its harness. We bought a magnet of a pig wearing a chef’s hat and dipped our red, mosquito-bitten legs into the cold, shallow water of a pond at low tide. We made sandwiches in a trunk, played through a three-hour playlist more times than I have fingers for, read and dreamt.
On the way there, in the sweltering heat, our car quickly became drained of coolant. We’d crept miles and miles to the nearest maintenance shop and snapped a chain we shouldn’t have to fill the reservoir and kept going anyway.
We were camped hours away from the park itself, so each morning, we made the trek. The mountaintops towered above us, the sun rose and lowered in a wash of purple and orange and red, the trees were thin and pared away by wildfire. We couldn’t decide which mountainside was the Half Dome until, of course, we saw the Half Dome, which is unmistakably the Half Dome and cannot be confused with anything else.
At night, I had trouble sleeping. Once, I climbed out of our tent, zipped it back up twice — the bug net, then the flap with the lock — and sat myself on the steps of our campground’s communal bathroom until I felt settled enough to sleep. I listened to the sounds of dogs barking, of fires crackling, of wooden doors swinging closed. I inhaled the dregs of our neighbor’s cigarette smoke. I waited.
I heard the crunch of the pebbled path to the porch. I saw the tattered shoes first, and then the face of my friend, who had not been sleeping after all and hadn’t yet brushed her teeth. I looked at her long enough to memorize her dark curls, her dark eyes, her familiar sweater, to capture the memory, a portrait, a frame, a second from motion.
She moved anyway, closer and closer, and she pet my head as she left, long, pale fingers in my fried hair, and the dog bellowed again, and I could feel it all, the waves of sound, the texture of everything but air. Grime lodged underneath my fingernails. Blue sagging beneath my eyes. The sink running just feet away. My feet swelled, my kidneys ached and time was passing, each minute a real minute, each second ticking by. I could not confuse it with anything else — this was living, unmistakably.
3B. THE ROOM WHERE I LOVE YOU
When I returned to college in the fall, I was wrong-footed and terribly afraid. The prototype of me I’d built, the one I’d been piloting, had been engineered in a vacuum, and I was unsure if it could withstand the pressure of normalcy, this marionette build, my joints that moved in only two directions. Nevertheless, I reconstructed my life in Los Angeles poster-by-poster and plate-by-plate. Everything was tucked in bookshelves, cabinets and corners, organized and tidy, my pencils in the desk drawer, extra hangers in the closet.
My once-roommate and forever friend took an overnight flight to visit me. I dragged her around all of Los Angeles, to Melrose and Pasadena and back home to South Central. Together, we bought a sheet cake, accidentally interrupted an anime convention, and wandered into a garden of prayers. My favorite of them read, “I pray for forgiveness / And ask God to make me open my eyes / And share some wisdom.”
Later, after she’d gone home and left me missing her, my friends and I were tasked with counseling another friend of ours in the art of asking out a girl he was interested in. I knew her only vaguely but liked her all the same and felt especially that she was fit for my friend, and thus I was deeply invested. Our other friends had scattered — one to Target for ice cream, another to sleep. He was planning to take her to a nice, formal dinner. We were enthusiastic, but he was scared he was coming on too strong.
I shared my thoughts, and he interrupted them to say, “You know, you really are one of my favorite people.”
I said, “As you are one of mine,” and, for the first time, thought to say nothing else. He was so earnest, and I trusted him so dearly, that now, liberated, I couldn’t help but believe I’d made an impact.
As a nervous child, I once became overwhelmed with the amount of hands that had played a part in building my house. I thought of all the tile manufacturers, all the contractors, all the trees and all their planters, all the construction workers, the thousands of years of nature and exertion that made this hulking structure. There were structures here before this house, too, I was sure, and people who lived there, and people who made them, and I was one among them, another placeholder, a host of this great human thing. Around the light switches in my house, there was the occasional blemish that revealed the area surrounding it had been hand-painted, the mark of a wide brush, the smudge of a glove. Sometimes, there was even a fingerprint. When I moved out, I realized I had left my own marks. There were divots in the floor from a beanbag, the planks worn from the weight of little girls.
There is a scar on my skull from a surgeon. Another on my tailbone from a fall on the marble steps of a villa in Italy. Another on my knees from a tumble down a concrete staircase in Hawaii. There is a scar on my hand from a splinter, still stuck there, that I received from my own dining table, running my fingers absentmindedly across it as I conversed with my sisters. They’re all permanent, just as equally, each as much a part of me as the next. I am the owner of my tragedy, yes. This is only because I am the owner of my everything.
God, last shot. Strike me down. Too much longer here, and I might even matter.
3C. ON FUTURES
I’ll report back.
