Epilepsy & Me

I woke up on my sofa in the living room with ten or so of those big, white men looking down into my face. My partner was there and he explained that I had a seizure right after I got out the shower. It made sense – the last thing I remembered was brushing the tangles out of my hair, and I could feel that one side was uncombed. The same thing happened where I could barely talk because I had only just come back to consciousness, but this time I at least understood what had happened whether or not I was able to verbalize it straight away to the paramedics.

I have had Juvenile Myoclonic Epilepsy since I was fifteen; I was having “twitches” where I would lose control for a split second, and the neurologist said it could have been caused by stress, lack of sleep etc.  Then in college, I started having grand mal seizures.  I woke up in an ambulance to a big, white man who was about to stick my arm with a needle.  Okay it wasn’t as bad as it sounds, he was just a paramedic, but since I had just come back to consciousness I could barely talk and therefore it felt like one of those horrible nightmares where you are trying hard to scream but nothing comes out.  I had cuts and bruises on my face and had clearly bitten my tongue.  The last thing I remembered was that I was walking to my car after class; I was walking to my car, and was seconds away from being at the wheel.  I’m thankful that I didn’t make it to the car, but the “what could have happened” part frightened me for a good year.  It was really a blessing, because I had been doing too much work and activism, and it forced me to make those calls and emails to say that I couldn’t do it anymore – and they were forced to take me seriously.

The same year, a month later, I woke up on my sofa in the living room with ten or so of those big, white men looking down into my face.  My partner was there and he explained that I had a seizure right after I got out the shower.  It made sense – the last thing I remembered was brushing the tangles out of my hair, and I could feel that one side was uncombed.  The same thing happened where I could barely talk because I had only just come back to consciousness, but this time I at least understood what had happened whether or not I was able to verbalize it straight away to the paramedics.

My parents started taking more interest in me, my health and were forced to pay attention to my mental health.  My sister, a doctor, just saw it as another trivial medical thing caused by some neurological dysfunctions, and I don’t remember my brother saying anything much.  I do remember my mother trying to convince me that my siblings did not love me and that they only call me because I am sick – its pretty funny if you think about it, but I took her way too seriously at the time.  In time though, my mum has realized that her constant questioning is only stressing me out more.  I overheard her telling one of her friends, “You know, so what if your daughter’s boyfriend isn’t Indian?  If you are okay with it then life will be easier for her”.  I’m started to think that my mum gets the queer stuff, that although she was trying to protect me; she was the one stressing me out.  Now she is calling people out on their crap, AND reading bell hooks!

The long list of medications changed my life, and my new hurdles challenged me.  I became really scared of accidents happening – in the car, on a plane, in the elevator, on the subway…  I was told not to swim on my own, so I became scared of swimming too.  I felt I was becoming a child again.  My partner had to sit in the bathroom while I showered, bring me water to take my salad bowl of medicines every night, and to hold my hand as I was paranoid about having a seizure while walking down the stairs.  However, I faced a lot of these fears recently.  I swam in a deep lake in Southern Illinois, I rode many high-rise elevators in Atlanta, rode the subway in Chicago, and felt really good about all of it.  I will even be flying in a plane to Hawaii in the winter, and I plan on enjoying it!

But despite my personal triumphs, I have felt people blaming me for being helpless and weak.  “How can she call herself a feminist and be so dependent on her man?” or “How can she live with such a heteronormative lifestyle?”  When I was still an undergrad, my classmates didn’t understand my unwillingness to stay at study sessions until 2am or my inability to go out and get drunk every Thursday, Friday and Saturday. The Women’s Shelter I volunteered for was use to being able to call me at all such odd hours asking me to volunteer for them, and when I was able to drive I would usually go whenever they called.  But as soon as I couldn’t drive anymore, and was more dependent on my partner for rides, they barely remembered who I was.

And then I felt the judgments from my partner’s parents and my stepchild’s mother, not understanding why I was taking so much of my partner’s attention that was suppose to be solely devoted to his son.  My mother kept warning me, because Westerners aren’t always used to having to help other people in that unconditional “every-one-is-family” way.  She said “he’s going to feel trapped, he already has to take care of one child, now another?”  Everything was moving very fast, and I was lethargic, tired and dizzy all the time – the new medicines.  I was questioning whether I was worth being taken care of, and wondered why my stepson was cared for by so many, but everyone was thinking twice before lending me a helping hand.

Then there were the more amusing judgments by my hippie friends who were fascinated by my Hinduism and my epilepsy, trying to ask me about hallucinogenic drugs and spirituality.  I told them “no, no I don’t think that my seizures are enjoyable or sacred, or even that I am possessing the devil.”  If anything I think its the gods and goddesses telling me that I am doing too much work and worrying, and that I need to stop.

Although I know it has made me stronger, my disability is one thing about myself that I have not yet been able to reclaim and feel proud of.  While I am proud of my queerness, my race, my religion and my gender, I am grappling with the blessing of having a disability.  It is hard knowing that if I have another one and it lasts a little too long, or I am laying in the wrong position, I could be forever in a vegetative state, or not alive at all.  But anyone can die anytime, so why should I worry about it 100x more?  I smacked my forehead on the washing machine door and grew a bumpy bruise in the same exact corner as I did when I fell to the floor on the way to my car.  It freaked me out a little bit, but things are only getting better.

In terms of me and my partner, maybe it’s a miracle we made it through all the baggage, but I’m glad we did.  It’s a big deal trading baggage with an intimate partner, and all the power dynamics that go with that.  Having loved so many people, romantically and platonically, that didn’t return the favors; it is crucial that I feel appreciated and worthy of this care.  I can’t be someone’s number 2, next to their number 1, because I am worth just as much as everyone else.

I am endlessly grateful for my partner, my parents, the couple of friends who gave me rides home to pick up my forgotten pills, and the unknown stranger who called 911 for me and stayed with me until the paramedics came.

“These are not times for the weak of heart.” – Alanis Morissette

About the author

Anurag

Anurag is a queer, feminist, social worker-to-be. Currently residing in the cornfields of Illinois.  Fierce, emotional and reclaiming the brown-ness.