what it feels like: 'epilepsy has made me a more grounded person'
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sonika kainth wants the world to know that there are many forms of epilepsy — and they don’t all look like they do on tv. getty
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sonika kainth is a toronto-based doctor and health advocate who lives with temporal lobe epilepsy. when she had surgery on her left temporal lobe years after her diagnosis, sonika was scared, but the procedure made a vast improvement on her life and health. she wants the world to know that there are many forms of epilepsy — and they don’t all look like they do on tv. this is her story.
i was around 19 or 20 when i started having these episodes, which felt like sudden anxiety coming on. i know now that what was happening was a seizure called jamais vu, which essentially feels like something bad is going to happen. i thought it was because i was in university and applying for medical school, that it was because my life was so busy and hectic.
then i had my first full-body seizure, but we don’t see enough about that on social media or just in general while growing up. it wasn’t familiar to me. so again, i thought it was just anxiety or stress. it came the day before medical school started. i was with my friends, they called 911 and i was taken to the er. they told me everything was normal, so i thought, “okay, maybe this just came out of nowhere. let’s move on with life.” but i still had focal seizures, though i didn’t realize that’s what they were at the time. i thought they were panic attacks and i continued to assume they were all just stress-related. it wasn’t until i had my second full-body seizure at the age of 21 that i was diagnosed with epilepsy, and that’s when i saw an epileptologist and was started on medication.
what struck me is that the emergency doctor had booked me for an appointment with the epilepsy clinic without telling me exactly that, so it was only when i got to the clinic that they asked me tons of questions about my past, the feelings i have before or after seizures, and medication. i’m so glad my friend was with me at the time, because i looked at her in confusion, and she knew right away, and asked, “ok, are you saying she has epilepsy?” up until that point, i hadn’t been told that. and we don’t know what caused it, it’s considered idiopathic, which is often the deal with epilepsy cases in kids and young adults.
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about a decade later, i had surgery on my left temporal lobe because i was still having these focal seizures while on medication. if you don’t know me, i don’t think you would have been able to tell that i had them. they would come on for maybe five seconds and i wasn’t able to do necessary things like drive because of them. i said yes to the procedure because, for my type of epilepsy, research shows that adding another, third medication gives you an eight per cent chance of being seizure-free for the rest of your life, but having surgery on just the small load that is causing them can give you a 60 to 80 per cent chance.
since then, i haven’t had any seizures, apart from some minor ones called focal cognitive seizures or “auras,” and even those are much less than what i had prior to surgery. they also feel like the world is about to end. you have this feeling of being outside of yourself, or like that stomach drop you have in an elevator when it suddenly moves. it isn’t like on tv; my eyes didn’t twitch, my hands wouldn’t sporadically move, i didn’t shake. you might never notice it in anyone if you passed them on the street.
when i was first diagnosed, there’s something called “a honeymoon period” with medications. i thought things were going quite well, and i had support from my friends and family. in residency, things were good, too. it was when i was on a higher dose of medication and was being considered as a surgical candidate that i reached out to epilepsy toronto and started attending epilepsy trauma and support groups. it’s a special thing getting to share your experiences with those who’ve been through the same, i wish i had done it sooner. that’s the key thing i encourage others to do if they’re living with this: reach out.
overall, epilepsy has made me a more grounded person. it has taught me that it’s really important to put yourself first. especially as a doctor, it’s taught me what it’s like to be a human with a chronic condition. i think it’s essential to hear people’s stories and carefully explain what they’re dealing with, because every patient has a different story and understands things differently. there’s a communication tool we’re taught in medical school, it’s called “f.i.f.e.”: feelings, ideas, function, expectations. it’s about asking: “how do you feel? what are your thoughts around this? how does this affect your day-to-day? what are you hoping to get out of this?” being a patient has made me realize that i deal with these things and how crucial they are. if you haven’t lived through that then maybe sometimes you roll your eyes and check all the boxes. but it should be more than that. patients are people.
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sadaf ahsan is a toronto-based culture writer, editor and stereotypical middle child. she can be reached here.
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