If you read my last post I made on the subject, this series on my experiences as a Black epileptic was created for Epilepsy Awareness Month. I finished it the last time, but was open to continuing it. I decided I’d do it after celebrating a special day. In this case, my birthday, although it will likely be published some time afterward. Thankfully, Medium came up with the Series feature, so I created one just to chronicle my posts. Previous entries can be found here. Dropping a link for those who want to learn more about Epilepsy.
As usual, folks know that I often write ratchet-ass, depressing-ass, long-ass posts that can be a bit grim. Since I’ve really been exploring how I express myself and my experiences as a disabled, neurodiverse individual, I’ve been striving away from narratives that reinforce normative stereotypes that compartmentalize for the sake of public consumption. The ending of that trend will continue here. Of course, I still don’t want or need pity. Don’t mind empathy or compassion though, and for long-time readers amongst the infinitesimally minor audience I have, your support is appreciated.
I often dream about dying or wasting away, lost within a labyrinth of uncertainty while I hope in vain for an answer to the existential questions always hovering in that space sandwiched neatly between my self-confidence and sense of worth. A part of it will always concern the feeling that I’d never truly be independent, and even despite the progress I’ve made managing my Epilepsy in some cases, I nonetheless remain tormented, wondering how I’ll ever reciprocate the tremendous sacrifices family members and friends have made for me. I’ve discussed how it’s felt like a prison before, but I’ve never really delved into other doubts, i.e. wondering what I’d do if I ever managed to outlive any of the relatives in my fam I currently have relied upon throughout these experiences.
That said, making it to my thirty-third birthday is sort of a milestone in itself, given what I’ve had to deal with throughout the years trying to manage my disability and the complications associated with it. There were many rough patches throughout the journey so far, as I not only watched opportunities I’d long wanted to pursue slip through my fingers, but also the loss of several friends and people dear to me, in some cases to Depression and other illnesses.
Nightmares about my abuela’s homeland — Borikén — completely submerging underneath an aquatic wraith as our people fought in vain to resist the forces of Imperialism post-Maria. Disaster Capitalism continuing to displace us through destructive economic and social policies, as well as through state-sanctioned brutality.
Fears those involved in the activist field here in the Union would meet the tragic fates countless are being subjected to in an environment that continues to brazenly disregard the value of our lives, even globally. Knowing the degree I’d inadvertently spent thousands in order to acquire was effectively worthless, fancy window-dressing. Anxiety caused by yet another hurdle in my rehabilitation. Countless other things I’d keep to myself.
I wouldn’t keep the time I watched nurses and doctors in a hospital wing escort a sistah, who’d survived a severe episode while undressing herself, into a mysterious unseen corner to myself though. The remaining staff left her clothes sitting in the lobby, some even cracking jokes as they walked past the evidence of a medical crime scene for upwards of thirty minutes, uncaring until the remaining patients spoke up in disgust. I wouldn’t keep the crime that almost resulted in my mother dying from severe fibroid complications that doctors initially dismissed as “vertigo” to myself either.
I remember the first time my Meniere’s began to develop prominently; occasional teetering; the sensation that I was about to slip off of a tightrope, even with my feet firmly planted on a sidewalk. Occasional stumbles that sent my family rushing to my aid in the fear I’d had another seizure. Then, the first major episode; the telltale staggering as my vision spun in a violent cycle of cartwheels, akin to a merry-go-round gone awry; my head smacking our porcelain toilet as I instinctively rushed to the bathroom to vomit, only to collapse as though I’d overdosed from an alcoholic binge.
I remember my first trip to the hospital and the ensuing ones that followed with each severe episode of Meniere’s. Even the utter shame and embarrassment I felt while completely helpless, as my family tended to me. A milestone in my life had been dwarfed entirely by yet another struggle. In a way, it still is.
In spite of these grating horrors, there were other things in the push to manage my condition with much more positive yields. I remembered Brad, one of the few #FFFFFF therapists I could literally count on one palm I’d ever had who treated me like an individual. A stout man just past the median in age, always inquisitive, but never intrusive; cheerful and sympathetic whenever he queried about my living status, absorbing my occasional elegies about race and ableism without pretending he could relate to them.
I still remember the first time we attached sensors to my temples, as he pitched his rather unconventional method of therapy with the passion of an eccentric scientist: weekly neurofeedback sessions that helped the brain fine tune its activity. Like Frankenstein, the equipment had been modified personally, even acquired through his own personal funding. It swarmed with wires that I subconsciously imagined would spontaneously short-circuit and cause an improbable explosion. Call me an optimist.
The first session I had, I found myself listening as the music he played constantly paused in a continuous symphony of fragmented chords. My neural pathways were littered with clusters of haphazard stimuli; the equivalent of potholes, I liked to imagine. Yet I eventually found those disruptions diminishing, to the point that I routinely fell asleep to the midi tunes that filled my ears with 16 bit nostalgia.
Distance cut this victory short as new changes in Medicare coverage led to the entire facility being moved elsewhere, and with that my therapist. Attempts to resume our sessions deteriorated as we found ourselves meeting in his old office, now completely masked in shadow and emptiness. Each visit almost felt like we were trespassing, presumably to continue profane research inside of an underground lab. Yet, I eventually felt something sacred in that place while we continued our neurofeedback sessions; an equilibrium as my brain repaired itself. I miss it.
I never imagined I’d come close to experiencing that mental harmony again, but I did. It came years later, through the successful combination of therapy with the gradual embrace of different aspects of my ancestral heritage, primarily as a vehicle for improving my mental health. That’s not to say it didn’t come with its own drawbacks, but overall, in spite of the difficulties, I’d found the practice to be a net positive.
It was ultimately awkward trying to practice my rites in a home full of Christians, but I found my mother’s acceptance of it welcome. I liked to imagine the fact that I believed in something was what encouraged her to buy new candles or incense sets for me whenever I performed my rites, often without asking; collect old photos of the family and other trinkets that belonged to departed relatives for me to peruse through when I set up my altar. Although she never inquired too deeply about the intricate workings concerned in the process, nor where I went each time I went outside in our backyard to perform tsifodi, her respect of my personal space and journey was evident, even though I could tell on occasion that she wondered about it.
Others close to the fam, in addition to my siblings, were also happy and supportive for me. Even my primary care doctor Dane supported it, although it never took centerfold. I knew it wasn’t a cure; I reaffirmed it each meeting I had with the brotha, a bonafide nerd who always lugged an unwieldy contraption that resembled a laptop… if it was designed in the 1960s. It was a laptop, in fact. The one he has now looks much nicer.
Dane reminded me of the doctor I often imagined I would want to be; someone who exudes genius without the trappings of inaccessibility. Dressed in a trademarked sterile navy uniform while possessing a contagious laugh and sense of humor. Always ready to inform me about the intricacies of the different meds he wanted to test for my Meniere’s, careful to coordinate with my curandera. Perhaps that camaraderie was what allowed me to confide in him when I first began tsifodi. I know it’s what will ensure I find a way to heal and fight yet another case of neglect yet again.
That said, I enjoyed briefly delving into my reasoning in-between sporadic uses of “fuck”, but in truth, as I’ve written myriad times before and I won’t shamelessly plug here, I never understood entirely. I felt each of them 3D-printed into my very blood and consciousness, recalling Narratives, Histories, and Memories from a time before language could express them.
I repeat this story for a reason: in a way I still can’t express it, and with Epilepsy always skirting the margins of my awareness, I find myself lost in another place, venturing into neural potholes that have become chasms. I want to remember remembering that feeling, along with the others evoked while recalling these experiences into existence, even as my seizures sink their fangs inside of my brain.
I want to remember Dr. Sam; I want to remember Brad; I want to remember Dane; I want to remember my neurosurgeon Dr. Glazier, who I often call “Sub Zero”; Sam, a survivor who’s had healthy children while living the Good Life with his wife; I want to remember my siblings, my friends, my parientes, mentors, the “American Business College” trips I took; the nine times I nearly died; the rasclot of a cop who nearly shot me while I was having a seizure; the ableist library staff who called the police on me and excused their blatant fuckery by claiming I had social problems that apparently legitimized their response. I want to remember remembering those Narratives before strangers claim to remember them for me.
Even as yet another chapter in this experience as a Black Epileptic enters its denouement, I want to remember. So I scream inside until my mind carves a meteoric crater inside of this space; I cry until my tears form a mist only my Egungun can sense; bludgeon the abyss that is my Depression itself until it trembles beneath my rage; cultivate the atike, medicine, inside the earth nestled in front of my Tree, my life, with a fine machete.