This, unfortunately, is my disability origin story.
It is November 2018. I’m going in and out of the most intense mental health meltdown of my life, and, like any self-respecting young person in a psychological crisis, I decide to alter my appearance.
For the past few months, I have been studying abroad at UCT in South Africa, the country in which my best friend at the time is also living. On this day, in the middle of November, I have one final exam paper to write. Once that is over with and I’m back in my Cape Town apartment, I head out with my now-ex-bestie into the town with two agenda items:
- Dye my hair.
- Pierce my nose.
In a matter of hours, both goals have been achieved, and I am belatedly freaking out about what my parents and grandparents are going to think when they see me. I eventually calm down because I am a badass, and because if they had no choice but to deal with the tattoo I got earlier that year, they will find a way to deal with this other stuff as well.
Speaking of telling my parents things, something I have told them is that there is no way I am going back to school in California next semester. If they send me back to school without the mental health break I need, I assure them I will not come back alive. They agree to let me stay at home for a semester, and I make arrangements with my California school accordingly.
Sometime after this decision has been made, a commission comes my way. A singer/actress I know has recommended me to a producer she’s worked with, who is looking for a writer to do some screenwriting. I accept the job, because I’m going to be back in Ghana for several months and it would be cool to have something to occupy myself with, right?
Unfortunately, there are several factors I fail to properly consider.
Before November is out, I’m back in Ghana, in my parents’ house. One would think, now that my semester is done, and I’m on break, and I look like a righteous badass, that my mental health would improve somewhat. Alas, imbalanced chemicals can be extremely stubborn, and I am as bad as ever, for several weeks even after I return. I often sleep for close to 20 hours out of every 24. When I am conscious, I am often crying. It’s as if, by the time I wake up, I am already in tears. I consistently interrupt my mother’s affairs with tearful declarations that I do not want to be alive anymore. While all this is happening, my screenwriting project is sitting there, waiting for me to get myself together. The client wants it done by end of January, or perhaps February. The new year is approaching, and I still can’t bring myself to want to exist, much less write.
Deep into January, when I am still showing no signs of improvement, my mother coerces me into psychotherapy, and the therapist, in turn, nudges me towards a psychiatrist who puts me on antidepressants. With concurrent therapy and medication, I start to slowly feel like a human being again, as opposed to a dead thing in animated flesh.
Maybe, I think, I can try to be serious about this screenwriting gig.
It is so much harder than expected.
First of all, I am a complete novice to this storytelling form and related software. New things take time to get comfortable with, and besides, I am a slow, deliberate writer. But there is so much pressure. Some of it is from the client. They want the thing by the fast-approaching deadline, and my pace prompts them to frequently check in. I already have anxiety. Every time I get a message from them, my heart falters. Every request for an update is interpreted by my brain as a blasting, even if it is requested in the kindest possible tone. Each set of notes I get on a script makes me think, “Oh God, they think I’m not good enough. They think I’m a trash writer and it’s probably true.” These thoughts come to me regardless of how positive their feedback may be.
Once I start working in earnest, I realize how much I underestimated the amount of work it takes to write an entire season’s worth of a web series by oneself. Goodness, people have whole writers’ rooms for this sort of thing! And here I am trying to do this all on my lonesome—apart from my client’s editorial input—during my first experience with the artform, no less! Hectic.
Through my depression-corrupted thought patterns, it is impossible for me to see that these conditions are among the many reasons I should give more grace to myself. Instead, all I can think is that the reason I’m not doing this work as easily or quickly as my client desires is that I’m deficient and useless.
The slowness of my pace drives me up the wall. Never mind that 13 episodes is plenty, that the revision process is long, that I am fighting for clarity of thought through a fog of mental illness each time I sit down to write, or that I’m unfairly comparing myself to the lightning-quick brain and production rate of my client, who is a veteran in this artform and industry and is simply a very different sort of creative worker than I am.
My self-reprehension filters down from my attitude towards this professional writing assignment and further into my feelings around my own personal writing habits. My portfolio is scant—if we’re talking about writing that I consider even close to professional-grade quality—and I hate it! I think of all the brilliant ideas I have that I rarely manage to turn into completed pieces of writing because my work ethic is basically nonexistent. Indeed, I am always using the busyness of school, or demands of work, or the incapacitation of mental illness as excuses. None of these would stop me if I were truly serious. I say I want to be a professional writer, but here I am sleeping and crying because I’m tired and sad. Tiredness and sadness don’t get you published, idiot! Here I am taking at least three days each to produce 15 pages of screenplay because I’m agonizing about “taking my time” and “doing it well.” Lame cop-outs from an incompetent writer.
I chastise myself: If you want to be a writer, you will need to do the work, no matter what your mind state or physical circumstances. You will need to be ruthless with yourself, show no mercy, work like you’re on crack. And you deserve to be punished for all the life and time you have wasted so far. Your punishment shall double as your atonement. You will translate stories in your head onto the page until you are either done, insane, or you drop dead. Don’t ask me any questions, just start writing, you useless, lazy maggot.
This dangerous self-talk, fueled by years of pent-up anger and frustration at myself leads me to pick a story idea—there, I have one—and decide to put it to paper in the most merciless writing process I have ever subjected myself to.
I start to write words down: a vomit draft of a brand-new speculative fiction story, the idea of which has been simmering in my brain for at least two years. My vomit drafts are almost always traditionally written, in longhand, with a pen and a notebook, and this story is not an exception. I break in a new notebook just for this undertaking. I write. And write. And write.
I am hungry, but I do not eat. Only writers who can actually write well and produce finished stories deserve to eat, therefore, I do not deserve to eat. I am exhausted. I do not sleep. Only writers who do a sufficient day’s work each day deserve to call themselves “tired,” deserve to sleep. I do not deserve same, and thus, must write until my eyes bleed.
I am sure I get headaches. I am too mad to pay attention to them. Who cares if I am physically miserable? Punishment isn’t supposed to be enjoyable, and I tell myself I do not care if I burst a whole blood vessel, but this story must get written. The era of starting and stopping without finishing is over.
I lose my mind. For several days, I am in some sort of trance. My body is decaying, my mind is deteriorating, all I can think about is that I must finish a story for once in my life, and if it hurts, it’s because I deserve it, and if it kills me, it’s only because I was never a cut out for my own dreams.
At this time, my house is not conducive for any intensive writing or studying. I do not have a desk; the closest thing to an adequate workstation is the dining table, which is often scattered with baked cakes, paper and rubber packaging, and other paraphernalia my mother needs to run her solo baking business. Besides, the blender and radio are constantly running, and it is a hassle to hear my own thoughts from the dining room.
But I must write, and so I write, everywhere I can. On my bedroom floor, on my bed, on the TV room couch, on the living room sofas. Everything is uncomfortable or requires some weird contortion of my body so that my right hand can continue peppering page after page with feverish words. When my right hand gets so strained that I can hardly use it for a while, I switch to my left hand. But my left hand’s writing is not as developed, and the slowness worsens my frustration, so I can bear it only briefly until I force my right hand back into torturous action.
Some part of me recognizes through the mental frenzy that I need a writing desk. I ask my parents for one, as a “birthday present,” but it does not arrive before June.
Interlude: Related incident. Flashback to Class 6.
I am ten or eleven years old, still in primary school. Perhaps I am too old to still be messing with the new monkey bars on our school’s playground, but I do not particularly care. And, as with everything I do, I am intense with my playing. I swing and swing, throughout break time, straining the muscles in my arms and stressing the skin of my palms on the metal rods as I pivot with my feet dangling above the ground.
I don’t even realize how much damage I am causing until the bell rings, signaling the end of break time, and I finally get off the bars, look at my hands, and my palms are rubbed raw and bleeding. They sting badly, but I’m a tough kid, and I hurt myself all the time.
I think I wash my hands quickly in the bathroom before returning to class for French. But, back at my classroom desk, I try to hold my pen in my hand and hiss as it makes contact with the sore rawness. I try to hold the pen in my left hand, and though that palm is suffering too, the pain is much more bearable.
It is in this moment that it strikes me as completely absurd that I can only write with one hand. Why are we socialized to be so dependent on a single hand? How are we supposed to take notes when the monkey bars tear up our right palms more than our left?
I resolve to fix this problem for myself. For the remainder of my pre-teen years, I stress myself and nearly all my teachers out, with my insistence on teaching myself how to write with my left. I am intense with this too. I force myself to take as many classroom notes as I can with my left hand, and it makes me dreadfully slow, to my own chagrin. The frustration only fuels me to try harder. I submit assignments that were written with my left hand, teachers complain of illegibility. I do not stop. By Form 2, at least one teacher is telling me that he likes my left handwriting more than my right. (“How the turn tables,” as the Tik Tok generation says.)
In the present day, I can write quite fluidly with my left hand. Some people call me ambidextrous, although I would not use the title on myself, since my right hand is still better and faster at nearly everything than my left.
End of interlude.
Back to 2019 and my self-inflicted punishment.
It is now about June or July. My screenwriting commission is obviously way past its January/February deadline, and I am sure my client is tired as hell of me. I get a new writing desk, but my body is so used to its bad habits that they persist.
My story is not yet complete, but I have made so much progress and written so much that the notebook I broke in is nearly full now, from cover to cover. I have, perhaps, one scene left, and I know exactly how this story is going to end.
I am still not at ease, and I still have my screenwriting project waiting for me, but I am beyond spent, and so wired that I can neither sleep nor continue to write, and so I recline on the TV room couch with my Kindle and try to read. The book is A Court of Thorns and Roses, by Sarah J. Maas. I don’t yet love this fantasy-romance series, of which this is the first book, but by book 2, it would have thoroughly sucked me in. For now, though, I am reading passively enough to recognize that something strange is happening in my body.
The muscles in my legs are twitching. I feel them. Calf. Thigh. Left leg. Right leg. Different parts of each leg. A twitch every 10 to 20 seconds, on average. The twitching isn’t abrupt. It is slow and, for some reason, sinuous. I don’t understand it. It creeps me out. I decide to look at it while it’s happening. I put my Kindle down and sit up a bit to observe.
I am watching my own body do things I have not commanded it to do, and it makes my skin crawl. The twitches in my legs look like animated earthworms living inside my flesh, making humps, sliding forward a few millimeters at a time, flattening, then reappearing elsewhere on my legs to repeat the motions. I have to wonder if I’m going mad.
I don’t want to think about myself going mad, so I go back to reading. But it’s only a few moments later that I notice something else that has, in fact, been going on for a while: my fingers are twitching, too!
From time to time, without my permission, a finger lifts itself off the Kindle and returns after a second or two. I can see it happening, but I can’t feel a thing. The fingers of my right hand do this more often than those on my left. I am flabbergasted at how any of this could be happening, and I can no longer concentrate on my book.
My next action is hazy in my memories, but I think I decide to distract my thoughts from my body with something more cognitively demanding: a return to my personal punishment. This is not a good idea.
An hour or so after I continue to strain my already stressed body, the twitching is no longer periodic. It is continuous, and now I have totally lost the ability to keep my fingers still.
My ten digits have decided that I am bloody Beethoven, and now they are moving like they are playing some symphony on an air piano, and they are not stopping, and at this point, I actually cannot tell if this is reality or not, and I am silently freaking the eff out.
Is it time to repent for daring to usurp God as judge by meting out punishment to myself?
I push the pause button on my purgatory. It’s about 2 a.m. I shouldn’t even be functioning right now. I finally permit myself to go to bed, at least for a little while.
Sagaa. I can’t sleep. And for the love of God, my fingers won’t stop playing air piano! To make things worse, I now feel this buzzing in my brain that could be anxiety, or sleep deprivation, or none of the above. It’s like Brownian motion, making it impossible to calm down enough to go unconscious, despite my exhaustion. I rise from my bed and pace around my room.
It’s 3 a.m. I am on the verge of a panic attack, and whenever I am not consciously moving my fingers, they are moving themselves. In that moment, this is the most terrifying thing that has ever happened to me.
I’m crying. I go to my parents’ room and wake them up.
My father books an appointment for the next morning with the only neurologist he knows in Accra. Neither of us trusts my twitchy body to drive, and so my father commits to taking me to the hospital and tells me to sleep until morning. I can’t. He gives me a sleeping tablet he claims will knock me out for at least four hours. I’m barely out for three, and when I open my eyes again, it feels like I never slept, only that I blinked out of existence for a second, and have suddenly reappeared. I’m unrested. And my fingers are still playing air piano.
I try a few things, like submerging my hands in cool water. Submerging my hands in warm water. Putting ice on my hands. I’m still Beethoven and still losing my mind. Eventually, it is time to go see the neurologist, and my father comes to drive me away.
I cannot trust my hands to fill the patient registration forms at the hospital, and so my father fills them for me. When it’s my turn, the doctor sees me and tests my reflexes, finds things lacking. He asks me several questions and tells me that my problem certainly looks like a nerve problem; what he is unsure about is whether it is a brain problem.
Naturally, as soon as I hear this, I conclude that I am probably on the verge of death. Ever since I read Michael Grant’s BZRK series as an early teen, I have harbored a persistent, somewhat irrational fear of getting an aneurysm and not knowing about it until it explodes and kills me. I don’t know if aneurysms can make your fingers and leg muscles spasm out of your control, but at this point, the doctor is literally speculating about brain damage, so I am one hundred percent freaking out regardless.
The doctor orders that I take some tests, including an MRI, so he can analyze me properly. My father takes me to a medical imaging facility. If you’ve ever had to do medical imaging, perhaps you will recognize, at this point, how my nose ring comes into the picture.
The medical staff inform me that no metal whatsoever is allowed into the MRI machine. The watch comes off. A staff member points to my nose, and I am genuinely startled; it has been about eight months since I got the ring put in, and I am so used to it that I often forget it is there. I’ve never deliberately taken it off, and it’s just classic that the first time I have to perform this delicate process, it’s when I can barely control my own fingers.
I try, multiple times, in multiple ways, to unscrew the stud, and fail. Some aunties in the waiting room/reception of this medical imaging facility watch me struggle and they seize their chance to moralize about piercings to me, their words coated in kindness and concern. One of them expressly tells me that once I get it out, I should never put it back. In the context of a potential medical emergency, I see her logic, but I still don’t like it.
Eventually, I resign myself to asking my father for help. He returns to the reception from wherever he went, and in about five seconds, unscrews the stud—something I had not been able to accomplish in fifteen minutes.
I put the stud in my wallet and go in for the MRI. I have to wait a day for the results.
Hours after I get back home, I need another sleeping tablet to fall asleep. I am so shaken, so anxious, so close to being convinced that I could die at any second once the unconfirmed thing in my brain bursts open. My purgatory is suddenly the least important thing in the world. How can I think about my story when I’m literally dying? Ei, God, when I said I would write until I dropped dead, why did you take me so literally?
So I don’t write—but I also don’t put my nose ring back in. After all, what if further tests are needed?
The next day, I get my results, and my father takes me back to the neurologist. The neurologist mounts my medical images on the wall and explains my results to me.
I do not have a brain tumor—thank you, God! But here’s what I do have: decayed spinal cartilage.
Here’s what I understand from the doctor’s explanation: Years of writing longhand, anywhere and everywhere, in atrocious posture, and overworking my hands, have led to the decay of the cartilage that separates the bones in my spine from the nearby nerves. The cartilage is frayed from individual vertebrae rubbing against each other too often. Now, with little cartilage to serve as a buffer, the bones of my spine are making contact with the nerves in my neck where they should not, and now the nerves in my hands, which are directly connected to the nerves in my neck, are receiving signals when they should not. Hence the involuntary movement.
The explanation is followed by recommendations, solutions, and prescriptions. I will have to allow my body to re-grow the cartilage in my spine. This can be aided by eating a lot of green things, including kontomire and seaweed, plus daily calcium supplements. In the meantime, I will have to ease up on my hands, especially my right. The doctor thinks it’s great that I am able to write with both hands, tells me that I must try to use my left whenever I can and allow my right to rest more often. Henceforth, I am forbidden from doing any writing anywhere and in any position that isn’t a proper, flat desk and chair. (“You see, that’s why I went to buy you that desk,” says my father in front of the doctor, as if it was all his idea.) The neurologist also recommends that I resume regular swimming. It is an excellent way to exercise my neck without the pressure of the weight of the rest of my body. In the meantime, some nerve medication should help to put my hands back under control.
I enter a daze that will take me days to come out of. I have written my way into corporal degeneration. Even for me, that is a new level of intensity.
My father and I stop by the pharmacy to fulfill my prescriptions before we go home.
Physically and emotionally, I am beyond exhausted. Perhaps that is why I wait yet another day before I even think about putting my nose ring back in. But when I try to put it in from the top, it goes only a little way before it stops. I am baffled. I try to put it in from inside my nose, but I can’t even find the hole from inside. Impossible!
I try again, several times from the top, where I can, at least, still see the hole, but I press until my eyes start to water, and the ring continues to be blocked by tough flesh, never breaking through to the other side.
I can’t believe it, but it’s true: a healed, 8-month-old piercing closed up in 3 days because nose skin is, apparently, miracle skin.
I am furious with my traitorous nose. So furious that, even when my father sees how upset I am about the closing and offers to take me somewhere to re-pierce it, I refuse. After what it’s just done to me, my nose doesn’t even deserve to be adorned. I withhold from it that privilege.
Epilogue: Conclusion of events, as of 2022.
The screenplays eventually got finished, seven or so months past the deadline. I disrupted my client’s production schedule so thoroughly that the window for producing and shooting it passed, and they were forced to move on with their schedules for other, more pressing projects. Now I am not sure if the scripts I worked on will ever turn into anything concrete. Alas, I am past caring. I’m just glad I made it out of that commission alive.
The story I wrote during my purgatory frenzy was eventually finished and painstakingly revised, and is, to this date, one of the best pieces of writing I have ever produced. It gained me an honorable mention in the Writers of the Future awards, 2021, 3rd quarter. I am still hoping to sell it somewhere, and so I don’t know when it will finally be available for public consumption.
These days, I write almost exclusively at desks. I still do vomit drafts primarily in longhand, because that is just how my brain works. I swim (almost) regularly. My nerves still twitch from time to time, very occasionally, when I forget to regulate my tendency to over-write and abandon my swimming practice for too long.
And I still have not resolved to get my nose re-pierced, because I’m still lowkey kind of upset.
The end. 🕸️
-Akotz the Spider Kid