We fight to improve the lives
of everyone affected by epilepsy

Jaiwantika

I was diagnosed with epilepsy when I was two. My memories of being epilepsy-free are basically non-existent, so I when people ask me "What's it like to have epilepsy?" and "What if you didn't have epilepsy?" I find such hypothetical questions difficult to answer, they make me have to imagine a reality I'm not familiar with; one that I've only read about, or watched in films or on TV. The answers don't come 'from within'.

Life for me, was initially devoid of TV- because my neurologist had said that television could trigger a seizure. So I read a lot, played outdoor sports when I could and was fairly seizure free on 100 mgs of carbamazepine. Looking back now, those seem like the good ol'days, when I was taking just 100 mg, and having a good time.Unfortunately the carbamazepine by itself was never completely effective, and I had seizures all through my school days. I also had these frequent spells of 'blanking out' and amnesia. But in India, where I'm from, epilepsy isn't considered a disability; it's still very much in the shadows. So although everyone in my circle knew I had epilepsy (how would they not, with the blank spells, seizures et al) it was not something I went all out to announce to the world. Anyhow, this culture of ignoring an invisible illness has its pluses; it made me pick myself up as if nothing had happened every time I had a seizure and just move on. I scored very high grades in school, played tennis, cycled and even swam on a regular basis.

By the time I wrote my class X board exams,I was taking 800 mg of carbamazepine per day plus 1000mg of sodium valporate. I was groggy all through the day and my mind ran in slow-mo. My grades slipped drastically, even as I started having seizures again. To make things worse, my parents were divorcing and it was taking an emotional toll on me. I did manage to do well in my boards, but my marks in Maths and Science were rather average that year. By class XII, doctors had reduced some of the sodium valporate, I felt slightly better, and my grades improved. I stopped sodium valporate altogether eventually, because it caused terrible hormonal problems and made me put on a lot of weight. In college and university, I was back to getting a first class. My neurologist had suggested I try topimarate and the drug was actually working. Till date, I take Topimarate and carbamazepine- nice strong doses of both to keep me going through the day. I aim for a seizure free five years like most. But, every time I try to complete five seizure-free years, something happens and I have a seizure. So, fingers crossed! :)

As a person with epilepsy, it's awful that an invisible illness thwarts your ambition and growth but at the same time achievement shouldn't be a way to overcompensate for the illness. A lot of people with epilepsy are thus, very achievement-oriented, very nice, kind and good to know but are given a raw deal because of how society sees people with disability- as lesser human beings or 'damaged goods'. It goes without saying that nobody is perfect, but disabled people often get caught up in a politics that deprives them further. In India, where by law I'm not disabled, I'm plain insane-I have no right to insurance,a drivers licence, child custody etc. It was only in 1999 that people with epilepsy could even get married. Even today, epilepsy is a valid ground for divorce in my country.

Epilepsy often leads one to be dependent on friends and family. Being dependent isn't nice;but it's amazing how many people's egos we boost, how many people depend on us to reassure themselves that they're nice, caring people. The only thing worse is people being mean to you because they know you have epilepsy.

Beyond that, I'm part of a twisted global culture that objectifies everything and everyone, even the sick and helpless. Nobody should want me to have a seizure, if they knew what it meant- but I know of men who think an epileptic sexual partner has novelty value, and if they can induce a woman into having a seizure, thy believe that it just proves that they're manly.

Epilepsy has a tendency to restrict your life; but if you've been living.with it for a very long time, you learn to cope. you never completely get used to the meds and the side effects, and you're naturally isolated from people-first because of the amnesia (you genuinely forget they exist) and because your tolerance to their insensitivity begins to wear thin. I've always wanted to escape the subversive culture that I'm a part of and just run away someplace better. I would like to complete my PhD and teach someday- because people with epilepsy can be very intelligent, very creative, socially aware people. I'm not really excited about having a baby or settling down. I know doing so might drag me down into the abyss I'm trying so desperately to escape right now. If I were to die suddenly tomorrow, I'd rather die a PhD, having served society in some way. It's important to live a meaningful life, and aim for some sort of control- when there is so little available.

Jaiwantika
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