Disclaimer: I am in no way attempting to project my own lived experiences and issues with battling epilepsy onto other people with mental health problems, or claiming in any manner, to represent them and their experiences. This is only an attempt to get my experiences across, to ascertain my own pehchaan in the myriad of others that exist and resonate within this University. If sharing my experiences helps to encourage discourse on affiliate mental health issues like anxiety and depression, something that I know a lot of students experience in law school, and engender sensitivity, then my aim would be achieved.
I was two years old the first time my body seized. Perhaps it wasn’t a very noticeable one for my parents didn’t give it much credence and dismissed it as an aberration. However, muscles contracting and expanding when they shouldn’t be is seldom a freak occurrence and the attacks resumed with greater ferocity on 18th November 2004, when I was 9, and have continued to haunt me eleven years since.
I say the terror of losing control over my body haunts me, and it was real enough for me to attempt to repress the memories as well as I could. The only events I remember were the ones that left a powerful impression on me at the time of their occurrence. I remember indistinct flashes of light as I was passed from one machine to another, doctors frantically trying to locate the source of the attacks. I remember wires being plugged to my head, behind my ears, on the nape of my neck; all kept in place with something that smelled suspiciously of a paper maché – multani mitti combination. I remember my parents’ tired faces, the sleepless nights when they tried keeping my fever down, the vague unconsciousness I slipped into whenever a seizure was imminent, tear tracks on their faces when I finally woke up with no memories of what had happened. I remember crouching behind the door, eavesdropping on the phone conversation between my mother and my aunt, sobbing, conveying to her the feeling of despair when she saw her only child’s body reacting to something invisible, holding her down as her body crumpled, writhing and flailing as she fell to the floor, completely unconscious, but impossible to restrain.
Eventually, I was diagnosed with epilepsy, when the MRI and EEG scans returned abnormal results. People tried to keep this information from me. The only thing I knew was that a part of my brain was doing something that usually didn’t happen in other people’s brains. I kept losing control of myself and I abhorred it.
Nobody ever said the word ‘epilepsy’ around me, I was only able to discover it accidentally when I searched for the name of my medicine online. Ever since 2004, I’ve been on medication, 1.5 tablets, twice a day. I had no idea why, until I Googled it when I was old enough. At least now I could answer those persistent questions regarding my medication: I had epilepsy. Until now, the only thing I knew about this whole matter was that I had to take medicines prescribed by a loony who plugged wires into my head on a monthly basis. I’d like to blame him for ruining my curls with all his wire-plugs.
Soon, however, I realised, the word was taboo in my family. “No, don’t tell anybody about this.”, “Humein tumhari chinta hai.”“Bacha, you’re normal, why are you asking me these questions?” Normal. The one word I have been hearing all my life. Every time I went to visit my neurologist, the one phrase he keeps repeating is that I could have a normal childhood as long as I remembered to take my medicines. I was a child then, yet the level of insincerity in his voice, and everyone else’s around me, was disconcerting. They never believed I could break out of that yoke of medicinal grogginess and general inertia that grabs hold of you when you’re taking medication for chronic illnesses. In what seems like a giant fuck you to all of them, I was determined to fight it and began to do well in school, despite how unclear my head was all of that time. Of course, nobody bothered explaining to me why they believed I would suffer in terms of my lifestyle.
After a year of medication, my condition seemed to be improving. However, that phase was short lived as in 2006, I had another series of attacks, more severe than those that occurred previously. I just fell into a deep slumber. When I awoke, I was in a hospital bed, surrounded by my entire family, even the ones who usually don’t bother showing up, all staring at me like I was some sort of an unwanted wart on the underside of their armpit or an apple that had sat on the table, oxidising till it became a disgusting brown mush. The point is, while their words were purportedly comforting, their eyes were full of disgust and pity. Not for the apple, but for its parent.
In 2010, they suspended the observation I was under as I suffered no major attacks and I was released out into the wild. Of course, shit went wrong. I used to love playing basketball.. It was 7 A.M.; practice had just got over and I was waiting for our coach to end his lecture. I was exhausted. It was raining and our school had an indoor basketball stadium. The rain was drumming on the metal roof of the stadium, and reverberating off the walls. Our coach was thundering on about something irrelevant. I just stood there, in that circle of girls, trying to listen to him but getting distracted by the white noise that suddenly wasn’t so white any more. The sound of the rain was taking over my mind, all I could hear was its pitter-patter, and all I could see was a group of people who were becoming more indistinct by the second. Darkness started to spread in my eyes, starting from the periphery and closing in rapidly. I ignored the coach and lumbered outside the stadium. I was near unconsciousness. I could feel my body twitching. Did I have an attack that day? I do not know. What I do know is that I went home early that day, told my parents about this, saw them exchange looks and ask me, “what do you mean, everything was going dark?” We went to the neurologist that day. He got the EEG done and told my parents the results. I never played any sport again.
“You can’t teach an old dog new tricks” – the adage applies to epileptics too. Before the Board exams, my parents took me to Shirdi so I could pray for good health during that period of time. We were standing in line, chatting with this random aunty and her daughter; both mothers inevitably comparing the two children. The aarti began. The closed atmosphere, the noise made by the bells, the exhaustion of the travel; all the ingredients were there. All I had to do was succumb to it. This time, my parents saw what happened. I simply slipped to the floor, like a ton of bricks, but didn’t lose consciousness. I willed myself to the side of the line where there was an ante chamber with a window cracked open. I stuck my head out and breathed. Everything came rushing back and I saw my mom, gasping, breathless, trying to make me drink water. “Are you okay?” she asked me. I nodded. Behind her, I saw the aunty torn between concern for me and triumph for her daughter; after all, she’d won one of life’s little victories. Mothers do love it when their children succeed at anything in life, be it becoming an award-winning author or being able to stand in that suffocating shrine for an hour.
Eventually I realised that the illness was winning; it was taking me down, piecemeal at a time. Epilepsy does not just break you with the fatigue and light-headedness, another effect of trying to control is the incommensurate weight gain. I used to care what I looked like until the medicine began to affect my body in drastic ways. The increased weight was absolute and immediate. I went from 36 kgs when I was 9 to an astonishing 70 when I was 15. Every time I popped a pill, I felt an inch increase at my waist. I tried everything, gymming, puking, depriving myself of food for long periods of time; nothing worked. I stopped puking when I saw that the presence of acid in my mouth was damaging my front teeth; to this day you can see the scars it left there.
By the time I reached the tenth grade I was truly depressed. I was fat and fat I would remain for nothing I could do was going to stop the gain. I started to become quieter and began to wonder if my self-worth was tied to my weight and body image. The fat jokes started and further damaged my already eroding self-esteem. After nothing seemed to work, I gave up and started eating again. It got to a point where all I could think about was food. My weight kept increasing, not only because of the medicine but also because I had lost the will to try keeping it under check.
The most horrendous thing out of all of this is that the jokes were never overtly mean. It used to be comments on my eating habits, my puffy cheeks, and anything that would serve to fulfil the purpose of a fruitful joke. Once, a really good friend of mine, offered me a packet of chips and I refused as I was feeling queasy at the time. In an attempt at mockery he said, “It’s not like you can get any fatter with another packet.” My friends laughed, I laughed, the joke was over, and everyone went home. However, every bit of that phrase stuck with me and hurt me more than anything else ever could.
The fat jokes continued all the way into college. It’s only when people make jokes about you that you realise how cruel they can be to you in order to obtain validation from others around you. The first day I came to college, I met a group of people who are now my best friends. We played truth or dare. They asked me if I was a virgin, I said no. One of them laughed and said, “Bullshit. You don’t look like someone with whom anybody could have sex.” I cried that day. He was a stranger to me then, but it hurt no less because of it. Another incident: One of my other friends and I were eating food in the canteen the other day. A senior, who is friends with her, came to the table and started talking to her. She was fretting over how she would gain weight if she ate so much fried rice. He laughed and said, “What are you complaining about? You look like a supermodel. If anyone should be worried, it’s says my name. Look at her demolishing the spring rolls.” It didn’t matter that I was famished as I hadn’t eaten breakfast that day. It didn’t matter that those spring rolls were well made and were making me happy. I was fat and I didn’t deserve to eat the same food that other people ate.
My parents are not much better. Every time my best friend comes over, they tell her to do something about my weight and tell me to start caring about what I look like. It doesn’t matter to them what I think about it. I used to care, but over time I came to realise that I’m comfortable in my skin. Perhaps, fat is my natural state. Perhaps this is how I want to be. I honestly don’t understand the humour in mocking someone with extra flesh on their body. I don’t feel hurt because you mock me. It hurts because I can’t understand the joke.
The combined effect of the weight gain, sleeplessness, anxiety, stress and the general atmosphere of suffocation at NLUD had a profound impact on my personality. I began to shrink away from activities I used to enjoy, like debating. I came to college with high hopes that I would do well, make my parents proud and be an ace debater/mooter/writer, the usual aspirations of the average law student. However, the epilepsy began to worsen in my second semester here, I dropped out of the IMS and I felt terrible about letting my teammates down. However, the horrendous feeling of loneliness and depression, that is an intrinsic part of my personality now, began to overpower me.
Another problem that one faces on a daily basis when they take medication for epilepsy is memory loss and fogginess. First semester was terrible for me as I’d fall asleep in class every day, which is how my cycle was in school. The teachers would get annoyed and eventually I learned how to manoeuvre enough so they wouldn’t notice I had passed out. The memory loss is another pain in the butt and my friends keep complaining how I don’t remember anything they tell me. There’s a recurring joke that if my friend ever gets sucked into the justice system for a murder she didn’t commit and I had vital information that’d save her, she’d surely get convicted as I wouldn’t remember it until her incarceration. I can almost say with certainty that such an event is very likely to happen (I’m sorry guys, I’ll try to remember the information, I promise), however, I’m trying to overcome it.
The problem with being someone who has issues with confiding in people and trusting anybody really, is that you bottle things up. I haven’t even been able to tell my best friends about what I’m undergoing and how sad everything seems from this side. They’re battling their own problems and I find solace in comforting them, rather than facing my own issues. They look at me and wonder how I do not have any problems in life and I agree with them wholeheartedly. I run away so far that I forget sometimes. It’s a twisted way to deal with life but I’ve always been one to avoid talking about myself. Until now. Because I realised there might be other people here who go around smiling like they woke up on the right side of the bed, but hurting so hard inside it feels like your chest will shatter into a thousand pieces filled with your misery and general disability to deal with life.
I want you to know that I know what depression feels like.
I want you to know that because you present your happy face to the world, it doesn’t mean that you don’t go back every night and think about expunging your sadness by falling into the ultimate form that sleep may take.
I want you to know that when you turn up for class with eyes puffed so much they’re glued together, it wasn’t because of the excessive guava juice you claim to have ingested the previous night.
I want you to know that I know what pity feels like. When I tell someone I have epilepsy I get comments like, “You’re so brave, you’ve been living so normally that we didn’t even know you were facing something like this.” It’s understandable that there isn’t much you can say to somebody who has to live with chronic illness every day. To wake up every morning and wonder if this will be the day that you finally succumb to it isn’t a pleasant thought. However, do not give me your pity. Treat me with sensitivity but do not think I am someone who must be pitied. I can do well without it.
I want you to know that I know it hurts to think about everything you’re missing out in life, right from getting a driver’s license to attending concerts (I’ve been to three in the past year but sadly, I had to keep my eyes shut throughout and they flash all the lights in the world that triggers my epilepsy).
I want you to know that to me, objectivity means shit. Life will keep sucking hard because chronic illness isn’t something that time will heal. Bad breakup? Time will blow it away. Didn’t moot throughout law school? Time will blow it away. Death of your grandmother? Well, time blew it away for me, I don’t know about you. But chronic illness is something that you have to live with for the rest of your life. I’ve realised slowly that keeping it to yourself isn’t going to help you in the least. Confide in your friends, confide in your family, punch a wall, cry yourself to sleep, let the frustration of having to deal with this out.
I want you to know that this doesn’t need to be your identity if you don’t want it to. You’re more than just your illness.
I want you to know that you’re not alone.