By Jasmine Lovely George
Originally published on 2 June 2016.
Mess makes us human — said no one. But think about it, isn’t it true?
I’ve never had a conversation with any other living person who is epileptic. I have cousins who may have it, but nobody ever talks about it. We are allowed to talk about the disease, but we don’t have a language to discuss having it. It’s messy and ugly and disruptive. We’ve had it forever, but it’s still unexpected.
Epilepsy doesn’t look good. People are always scared of what seizures look like. Well, I don’t blame them. Things always end in bad ways after a seizure. There’s no such thing as a good seizure.
When I think of movies that had seizures, I have to go back to a Malayalam movie from the 1990s called Sargam, in which one of the protagonists had seizures. How is that we don’t have seizures in movies any more, asked my friend N, who has vague memories of scenes with people looking for keys to put in the mouth of the person with the seizure. Has cinema become so sanitized, she asked.
Well, for a person living with epilepsy, the facts of our lives lie in the messiness, the un-sanitized, the lack of continuity, the vulnerability. You have to be aware that you might be dependent on someone for the rest of your life, and there lies the problem. Nobody likes a good mess. Nobody.
I met with an accident on April 5 at 3:30 pm next to Aurobindo Market in Delhi. I was hit by a government-owned car while I was standing on the pedestrian path. I fainted and when I got up, I realized I might just have seizures NOW. I was scared like hell. There I was in the middle of the road, surrounded by strangers and my sister 45 minutes away. I knew I wouldn’t last. For the first time in my life, I muttered the courage someone. I told a man who was selling tea that I might have fits and he needed to do certain things if I did. I don’t know his name. I don’t even remember what his face looks like now, because of my almost-seizure. But he held my hand and promised that he’d do what I told him to do. I cried and fainted. With God’s grace I didn’t have a seizure that day. I have had seizures since I was 10.
I have so much gratitude towards him for not letting go of my hand. He could have left me. He could have been scared like thousands others; he could have been scared of the trembling woman. He didn’t leave.
Afterwards I thought to myself that if he was not scared of it, why was I scared of talking about it?
Epilepsy happens. Some people swing by it, some people dance through it, and some people medicate themselves. To each their own. But what we don’t do is ever acknowledge it. I’m not talking about a movement, or a peer circle group. I’m talking about having a language to discuss it. Instead of having a negative image about it or having words like ‘fits,’ (what does that even mean!), but just to have more humane words? After the accident, for the first time ever, I thought maybe epilepsy was the only way to ask a stranger to help me, the mess I was so damn scared of, and shout out for help.
* * *
I was okay with me having Complex Partial Seizures. Let me break down this complicated sounding term: You gets seizures which might last for 1-2 minutes, and one can lose consciousness. How can you recognize it’s coming: you might start fumbling, might start biting lips, and might tremble a lot.
Then at 25, when I had to apply for my PhD abroad, my parents asked me to get on medication or else I could not leave the country alone. They were scared.
I was okay with it, but I had to have some sort of explanation for my epilepsy, to be counted as a functional being. When I realized that my favourite author Dostoevsky had it, it changed everything.
He wrote once, “All of you healthy people don’t even suspect what happiness is, that happiness that we epileptics experience for a second before an attack.” Dostoevsky brought his healing power in it. My sister could see lightness in it even as she played my caretaker.
Between Dostoevsky and my sister, they gave me the ability to see potential power in it. I did not have to see it as a disease. It was a wonderful way of dealing with it. Epilepsy could not be cured; it did not have to be cured. You could play with it, deal with it, negotiate with it.
I was ready with my reasoning, and with my texts, I was ready to challenge the medical discourse. I would not fucking go on medication for the rest of my life, I was sure. At 25, I was on it for a month. In that month I used to write every day about feeling like a zombie. My nerves under control, my brain activity at an all time low. After a month, I dumped them. I like my seizures; I like my mind, I like my hysteria and if it happens I’d let it happen. Only I had to know, and the people around me who love me, would have to know. They should be able to handle this. What was the big deal?
* * *
Acknowledging that one might need help all one’s life can be difficult. Especially in a lifestyle where being independent is the sole purpose of life; it is tough. I am a feminist activist who runs a startup called Hidden-Pockets in Delhi. I think, I walk, I react. It is even more difficult post an accident like the one I had, when thoughts of mortality and death hover. Thinking about epilepsy had always made me feel weak. But more than the condition, I had been terrified that others would consider me weak: a non-functioning body by the society, when the truth is I can walk this city, trek up hills, cook, and critique my government.
The government car hitting me also injured me. My left leg is still numb and I find it difficult to walk. I always did what I do best, act strong. When I was in hospital several days later (after one attempt to just wing it at home), my nurse aunt came to my room and told me to cry. I was shocked. She kept begging me to cry. I was just going to remain silent and angry, pissed off with my accident, and fed up with the state of pedestrians in Indian cities. I would do anything but talk about what was scaring me.
The families of those with epilepsy are scared and over-protective. I used to lie to my parents about the status of my illness. I never told a single friend in Delhi or Bangalore that I had epilepsy. At 21, one of my professors died. He lived alone and when he had seizures, there was no one to help him. People called him stubborn and stupid. I never told my parents about it. I cried for days. He was a brilliant man and very self-sufficient person. I was scared for my future.
A body that might tremble
As a woman, I wanted to love, make love, share, touch, and experience. And for that I had to talk, talk about my being and about myself. For a long time, epilepsy was not part of my story. It happened, I controlled it, and life moved on. Maybe I sometimes talked about it with my sister but I was aware that I was in denial.
When I was in my first serious relationship, I wanted to tell him everything. But how could I just blurt out that I was epileptic? Obviously he would leave me, but till then I had to share the bed: me, him and my seizures. I would avoid staying at nights, we didn’t move in together for a long time, because I didn’t want him to know it.
Eventually, he became the first person outside my family that I told. He said: Queen Elizabeth also had it. It was okay.
When I was 10, it took me time to learn the spelling of this word. E.P.I.L.E.P.S.Y. I had never heard about it, and in my social circle this did not seem relevant at all. When I had my first seizures, I remember people telling me it was because of the winter. And then started the trips to the doctors; neurologists, gynecologists, psychologists. We tried everything we knew, basically everything my parents could possibly find out. We could not ask much around for help because nobody really had to know what really happened.
My sister calls “IT” #Shakeitdaddy. The first time she witnessed it, this is how she described it. She saw me moving, trembling and put a razai on me. I refused, and she thought I was being stubborn as usual. I had foam around my face and my sister was not able to contain me with her little hands. And from that day, my sister became my caretaker. We still call it #Shakeitdaddy, and trust me it is the lightness of this word that helped me accept it as a part of life.
And from that day, it became part of life. The only issue was, I never ever told anyone about it. Well, I don’t blame anyone for it. Doctors used a weird term for it: Complex Partial Seizure. I obviously googled it, and understood something, it is a weird thing to happen. Little bit more of google, and I felt hysterical. Google always tells you something weird. It depended on the lunar cycle. It makes people weak. One could die because of it. There is no living with it. It’s genetic. It is hereditary.
So now you get it, why I never told anyone. It was hereditary. It shows. It runs in the family, I will take it to my future family, and nobody likes a diseased person. Obviously my parents were really sad about it, but they never showed me an iota of distress. Issues started emerging only when I grew up and had to leave home. It was not recurrent in my case, but my caretaker made it a lot more beautiful experience. How would I survive without her? What will I do without her?
My sister and I used to play a game around it. If #Shakeitdaddy happened, I would give her signals and she will make the experience bearable. Somehow my body would know I was about get seizures, and I would signal her in my sleep. She’d prepare things and I’d get my seizures, and with time I’d relax.
* * *
So I wondered at the age of 28, when I was forced to ask help from a random stranger and talk about my condition, what was I so damn scared of? I was not scared of my condition, I always thought of it in a lighter way, I knew how to work out, but so what was it?
If I trembled and had seizures, it would be a mess, people are not used to it and people might get scared, and I would have to be dependent on someone’s mercy.
Repeat: Mess, strangers, vulnerability.
And I didn’t want people to associate me with these three words.
As a friend from the disability movement once told me, we are all temporarily abled bodied, anything can happen, and we live under the myth that it will never happen to us. And isn’t she right.
It was human to cry, human to feel weak, human to connect. When I sought help and talked with the random stranger, I broke down, but it also felt lovely when he kept on holding my hand. When my ex-partner did not leave me, on revealing my epileptic status, I felt loved. When my sister takes care of me, it feels vulnerable, but these are the moments of mess that made it most real.
Why would I still stick to being perfect?
Mess makes us human — said Jasmine Lovely George.
Jasmine Lovely George is a feminist activist and independent researcher working on issues of sexuality and law in India. She is also the founder of Hidden Pockets, a mapping project on sexuality and spaces.