On Ableism, Black Pain, And The Struggle to Heal
I’m finally able to travel places and engage in much that I wasn’t able before, largely due to advances in medicine and physical therapy. Yet, my illness still leaves me helpless whenever I have an episode, often vomiting, too dizzy to walk, and incredibly-sensitive to any sounds I may hear. I’ve even injured myself accidentally before, and then there are the burdens I face as an Epileptic. Compound that with crushing Depression and hopefully one can glimpse a small portion of the struggles I deal with.
I’d harp about well-established cases where #FFFFFF doctors, even some NBPOCs, no matter how much genteel they may possess, are still overwhelmingly predisposed to seeing Black folk as more tolerant of pain and thus neglect them, but this isn’t a thinkpiece. This is a personal Narrative, a series of Memories and Histories permanently branded into my subconsciousness that I can’t exorcize. They are scars that have marked my being.
This Narrative was brewing for quite some time. The microaggressions, and in some cases outright dismissals from medical figures, simmering deep inside of a delicate place that is volatile and highly-reactive when the right reagents are introduced. The negation of my disability just because there was progress, and the pain that came with being completely unable to voice any dissent due entirely to how my brain processes speech post-surgery, though I’m not non-verbal. Being able to speak, but never say what I truly mean to say. “The personal is political,” as the cliché goes, yet the personal is also governed by myriad factors and spheres that inform what the personal can become in light of them.
I sat in the office in UNC Chapel Hill and waited for a doctor I’d never met before to finally present himself. Relatively slim, middle-aged, probably forties. Standard sterile white lab coat with a clipboard he’d been using to record data during a previous appointment. Late, but understandably so, given how busy the hospital often was.
We greeted and he reviewed my data, with a smug air that became more pronounced as he dismissed the findings of a previous doctor who’d diagnosed me with Meniere’s disease; a doctor who actually had a Master’s based upon the study of this illness, in fact. Talk about how hearing tests I’d just taken where I’d done well and not manifested any clear signs of hearing loss somehow proved I couldn’t possibly have it — even though a separate one had indicated long before him, at the same hospital, that I had a form of damage to my ear before. A sense of absolute certainty that was ignorant to the survival skills I’d mastered, sensing the subtle vibrations inherent within every wave of sound made in my right ear, especially whenever ringing lasted nearly a minute on occasion and numbed my ear to anything else.
He was a smart man, nonetheless, but beneath the glimmer of certainty within his gaze as his brown eyes maintained contact; beneath his attentiveness and relatively polite demeanor, there lay the same shyt-eating sense of assuredness I’d come to loathe in every other #FFFFFF doctor I’d dealt with. He described the symptoms of people who actually have Meniere’s attacks; the same which had to have been written in my hospital records since I experienced them regularly. He even inexplicably tried to argue that my surgery — more than ten years prior to the onset of this condition — somehow was causing these migraines and episodes of debilitating vertigo.
Yet, even despite knowing the flaws of his analysis, I accepted his assessment.
While my madre and I continued to listen, he then recommended physical therapy to help treat it. I was skeptical; some of these things definitely were not controllable by any form of exercise. But deep within, I knew my body was succumbing to atrophy. Especially my legs. I knew it; even Afa knew it. I weighed the possibilities silently while that same shyt-eating sense of self-assurance manifested, this time verbally.
“You can do physical therapy… or, you can go to the hospital three times a year,” was his ultimatum, and even this statement was incorrect, as I’d been to the hospital several times in the years prior. I’d had no less than 15 excruciating Meniere’s attacks, roughly once a few weeks monthly; sometimes multiple. Entire days in which I had seizures and auras that rendered me incapable of even sleeping didn’t ameliorate them. I’d only chosen to call emergency services those three times. I’d long grown used to his comments though.
I didn’t know how to describe the sensations I was feeling at first when they began to happen. A new enigma spurned by a cocktail of seizures and Meniere’s I could never quite adjust to. Jolts of powerful spasms that gripped my entire body, pricked my brain and made it impossible to think or move temporarily. I often sat for several minutes hoping they’d leave me the fuck alone, but like all of the issues I’d faced with my illness, they were a gremlin that always overstayed its welcome. I’d clamp my eyes shut, only to open them when the same spasms forced me to awaken, refused to allow me to find shelter in the Home I’d become used to since childhood. Even when I did manage to find some reprieve, I’d reawaken with the same debilitating sensations arresting me, gloating while it toyed with my nerves.
Mild palpitations began to happen, causing me to pause as dull pain inexplicably accompanied them while my muscles couldn’t function. I knew something was wrong, that they needed to be examined. Whenever it resumes, I’m reminded of this. But she didn’t believe me. She took the lull in the episode as proof that I was “okay”, rather than drifting through the same temporary denouements I’d become accustomed to whenever these episodes manifested.
So I sat in the lobby, only for it to return it again with a fury as a Meniere’s attack onset, almost like the Diabolus ex Machina known as a common trope in anime after the heroes had scored a powerful counterattack. No matter how successful the Z fighters were initially, we knew their power-ups and new forms would be matched by equally-powerful comebacks from the Big Bad. My illness was no different.
I saw her again when another episode manifested.
“I’ve been here before,” she muttered when she entered the living room of our home, as though she had some kind of familiarity with me. Certainly fucking not. Maybe the other EMTs who practically knew me by name because of how often they’d visited, but not her. Some of them knew me so well we’d had extensive conversations — in-between deluges and dry-heaves — about my artwork. While we waited for the ambulance — delayed by an accident — she said that I seemed fine, completely oblivious to the fact that my episodes lasted entire days without proper treatment; a few minutes not vomiting non-stop was far from an indicator that I’d gotten “better”.
I wanted to tell her she’d been wrong the first time, but I was too weak, so I remained calm and simply told her I wasn’t. When the ambulance finally arrived and she informed me that I’d need to wait in the lobby yet again, I stayed home. I understood the complications faced with a major accident affecting the situation at the hospital in addition to the fact that I naturally was not the only person who needed help, but I also knew that urgency was tainted by a very pronounced dismissal I’d come to find in her demeanor. The next wave was on me about thirty minutes after I’d tried to sleep.
I remember the prescriptions written whenever I was preparing to be discharged from the hospital; medicine that caused me excruciating priapisms, for example. I now knew what it must’ve felt like when Aflakete was cursed by his Mother for fucking around. I couldn’t know what a permanent one felt like, however. I remember medicines explicitly not meant for people with a history of seizures being prescribed to me, and the swarm of Epileptic episodes that ensued because of it.
“It’ll just make you sleepy, nothing too serious, as those symptoms are rare,” a doctor answered one time when I notified him how commonly I experienced the symptoms of medication thought to be rare. An anti-seizure med for mood disorders had even worsened my seizures, for example. He didn’t have the shyt-eating self-assurance I often saw in other #FFFFFF doctors, though. Instead, I could read him like my favorite graphic novel; his face might as well have been a page with full-color images and large, impeccable font. He was lying.
Desperate to find a medicine that alleviated my condition somewhat — patches I’d been taking chronically were only minimally-effective — I decided to try this medication out, even knowing the man who prescribed it was lying. Like I already knew, I had an episode every night for several days. Took weeks for it to finally wear off.
I remember another which began causing the resurgence of the same gynecomastia I’d spent years trying to recover from; that was only after a month of taking it before I stopped myself, not including heart problems that began manifesting as a result of it, extending beyond the jogging I’d learned to survive in other episodes I’ve mentioned earlier. Each reminded me of the same shyt-eating assurance the #FFFFFF doctor who prescribed the original had when he laughed off my concerns about that same gynecomastia forming, right in a room full of other doctors and nurses as my conditions were evaluated at Wake Forest Baptist Medical Center.
“It’ll go away; it’s nothing!” he chuckled nervously, with a performance that would win Worst Actor if it were nominated at the Razzies. He paused once he saw how ineffective it was. “It’s for the best,” he said. Yet that hobgoblin stole my voice, and I stood silently, accepting his lie. I had no faith if I told him about the other side effects that he would’ve acquiesced and understood. It was for the best, after all.
Instead, I sought the counsel of a nurse and told her about the violent reaction I was having to the medicine; it caused episodes that lasted hours and caused excruciating pain in my chest; like some kind of Pokémon, palpitations that had once been manageable nuisances signaled a frenzied panic even my lungs began to react to; they were not the spasms of yore I’d known for years.
Yet, even she was no different; the nurse never once asked about my actual health when I told her what was happening, never tried to console me or even distinguish if the reactions merited medical consultation. Apathy was her response, mildly irritated that I had gradually tapered off and stopped like any reasonable individual would’ve. The horrid side effects naturally faded once I’d halted it and I know things are better, but that hobgoblin remained in the shadows years later, still jabbing at my heart with just enough force to make it skip; just enough to remind me of the power it once possessed.
I might as well have been one of the unfortunate lab animals tested in experiments with no regard to their health. Their actions showed, as I knew, that neither of these individuals cared about mine.
In spite of that and countless other problems, I was no anti-vaxxer or new age conspiracy theorist touting pseudoscience and placebos marketed as natural cures. I’m still not. But I was a person who knew the importance of informed consent and knew the differences between sacrifices that were necessary and the casual disregard for my well-being. I’d seen it for well over a decade when countless #FFFFFF doctors prior to my main neurologist failed to diagnose my Epilepsy properly, even neglecting to order basic tests to determine the types of seizures I was having like every competent neurologist is supposedly trained to do.
She was a relatively pleasant woman. Her name was Gaelic in origin, which reminded me of a childhood friend with the same name. Considerate unlike most of the others. Patient.
She worked with me, printing out each exercise we practiced during the physical therapy sessions we had once weekly; except whenever an episode occurred and I was forced to miss one. My balance was still incredibly off, and I maintained many key problems while attempting to adjust to each of them, always pushing my walker beside me.
Being in this environment around others who were disabled, healing, and/or coming to terms with a life they’d never prepared for, was a liberating environment. It was a Hyperbolic Time chamber, where we could let loose and be ourselves while we strove to conquer our limitations. It was not the ableist world that saw people like me as abominations weighing down society.
I’d never have the police called on me while having a seizure; never worry about people being unable to manage my condition if and when I had an Epileptic attack — happened once, in fact; even in that limited space, I found a kinship in the other regulars. I complimented an elderly-brotha whose Black had yet to crack; a bonafide Rasta engaging in sports while managing his diplegia. He often complimented the honeyed skin tone I was finally getting back after years of being secluded inside my home and deathly pale like a vampire; others who liked my locs, normally hidden within a gigantic cap.
My therapist was frustrated when the exercises we’d been trying had failed to improve my condition to her standards. My situation wasn’t a typical one though. I had goals of my own, and while she often-noted how difficult setting one was, I reassured her that I’d made progress. Months later, with better medicine being prescribed by a new doctor, we started making breakthroughs. Like my curandero had always reminded me whenever he shared the wisdom he’d learned, I was healing. Exercises were helping to alleviate the crushing tension headaches that lasted for hours, even if they didn’t disappear entirely. I didn’t have to take Excedrin chronically any more, although the headaches that did occur on occasion were still disquieting.
“We’ll have our last appointment next week, and then we’ll discharge you,” she said in a rather casual tone while I tried to walk on the treadmill for the second time. I was making progress, but I definitely wasn’t ready; I’d literally not even been doing this for a month. My arms were slightly stronger and not as atrophied thanks to another exercise we tried. Much had improved. But it wasn’t enough yet.
We spent the majority of the routine fifteen minutes on the treadmill debating the situation; she kept trying to reassure me, a person who still had severe Meniere’s attacks that left me incapable of moving about once a month; someone who had problems standing for extended periods of time and felt the slight imprint of pressure from severe vomiting in brief flashes of pain with each laugh; someone she only saw once weekly, that my problem was somehow entirely anxiety-related. Never mind the gigantic scar on my foot from when I fell when my balance inevitably gave out — leaving a tremendous gash that I still see lingering — like I told her no amount of training would prevent. Or the shower seat I still used on occasion; anxiety worsened my condition; it didn’t create it.
I was healing, but I wasn’t ready. She refused to acknowledge this, however well-intentioned she may have seemed, even when my final evaluation didn’t even meet the requirements to no longer be considered impaired. Even despite telling her repeatedly about my problems traveling and issues interacting with people who have zero fucking experience handling Epileptics, she continued to suggest a gym I didn’t live near nor have easy access to was a good measure for me.
In retrospect, I imagined she must’ve thought it would come about eventually as long as the routine continued. Also in retrospect, in some cases her hands were tied; with no clear goals to push for, it’d be harder to justify to the invisible people overseeing my therapy that I deserved coverage. Yet, there were other problems outlined that we could’ve worked toward addressing. The healing I was experiencing was tainted, my pain shrugged aside because of what was assumed, rather than what existed as true. Even the possibility of continuing therapy in the future was soured by how it ended.
I know I will heal one day. I’m still healing now, even despite some of the symptoms from before resurfacing. Rites I never imagined I’d be able to complete have been accomplished; a family I was separated from due to my illness was able to see me again. Yet with every episode I have, every failure I experience trying to maintain my balance, even the ever-prescient prison that reminds me of how trapped I am, I begin to wonder if that progress will be undone. They are scars that have marked my being.
