Pepilepsy by Mark Jobanputra

Pepilepsy

It's getting faster, moving faster now, it's getting out of hand. On the tenth floor, down the back stairs, it's a no man's land. Lights are flashing, cars are crashing, getting frequent now, I've got the spirit, lose the feeling, let it out somehow.

‘Disorder’, Joy Division, Closer. Factory Records, 1979 (lyrics Ian Curtis)

Such lyrics are electrifying and vivid; I am a rather electrifying and vivid person myself, so was my fellow epileptic brethren, Ian Curtis of Joy Division.

Divided between joy and sympathy, I am unsure whether this character flaw is beneficial. I enjoy the freedom pass that allows me to journey through London without any incurred costs, but I cannot pass through true freedom (whatever that is). My brain is chained to this neurological defect; it infects my whole life. I enjoy the sympathy I get from women, but I know they do not like me for me. I am their baby; I am not their baby. Why would they like the things I get called every day: a retard, a mong and a window licker? Why would anyone? Male or female. Who would? I do not want to ruin anybody's reputation, but I do it because I am me. Why is that? Oh wait, it is because I have epilepsy. Most of the people in my life know nothing about it and seem to think my trigger is flashing lights. How cliched. What makes you think I cannot play video games and go to concerts? What makes you think I cannot get drunk? What makes you think I will have a seizure straightaway whenever you repeatedly flash your iPhone torch in my eye? People are inconsiderate morons.

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I want to be accepted, but I have to constantly justify myself. I have to prove myself, but I am unsure how to improve when I have this condition. Although my father has good intentions, I am jailed and cannot move out in case my condition worsens. Maybe I am jailed because of my epilepsy, maybe I am not, although it certainly feels like it. I am certain I can still drink, smoke, lift and run, but each one is dangerous. I just drink because…I just do. No that’s not it. It’s because I need acceptance from my friends and to seem more ‘adult’ to others. Mine is a Heineken, thank you. I smoke to help me concentrate; yes, I am aware it could kill me; however, I would rather addiction kill me than epilepsy; it means I can assume control. There is a 1 in 1000 chance of dying whenever I have a seizure even if I take my lamotrigine. I am aware of it. If I have a seizure and don’t take my lamotrigine, the chance of death taking me by the hand increases to 1 in 150. I no longer lift despite how much stronger it made me; I do not feel any stronger. I am strong physically, I can lift heavily to some extent, but I am not strong enough to ask for someone to spot me; it would be far too awkward. It would not feel like I am in control. Besides, who would want to help someone who is not ‘that disabled’ anyway? If a heavy weight fell on me, I would no longer have any control left; I would be known as ‘that disabled guy.’ It became a catch-22 ever since epilepsy caught me at age 22. I can still run, I guess. I used to run 5ks with ease, but I was always scared of having a seizure. Isolated from everyone else, left to foam at the mouth and have blood crawl down from my head to my lips, I can no longer take the risk. I am well and truly out of control.

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Hmmm. Maybe I am not as limited as I say I am. Am I just lazy? Have I become too complacent because of epilepsy? Well, what feels like my brain is being electrocuted and constantly fried seems to force me into laziness and craziness. The gargling people hear whenever I have a seizure sounds like mouthwash that keeps continually swirling around and around in my mouth. I once had a seizure when I was partway through a sentence when talking to my friends on Discord. One of the women in the group chat told me to ‘shut the fuck up,’ although we were both oblivious to what happened. I was surprised she begged for my forgiveness, but I forgave her despite not knowing why I forgave her. I had no idea a seizure had occurred. How embarrassing.

I do not want to keep on taking these pills, but I have to. I do not want to keep on having these existential crises, but I have to. I do not wish to keep talking about my epilepsy because of how stigmatised it is, but I have to. Why do I have to talk about it? Well, people have to be aware of what it is and aware of what to do when a seizure occurs. Why do I have to keep on talking about it? Well, I want to make my mark on public consciousness, specifically through writing. I have no other choice. Epilepsy is a contradictive disability, it can control you, but you can also control it. I will control it; I will beat all expectations expected of such a life-altering disability. Maybe I should not call it epilepsy and instead call it pepilepsy, for I must ensure I’m lively... You must be mad if you think I am a retard; maybe you are a retard yourself. We shall wait and see who prevails.