From evil spirits, lunacy, and genius to sexual ecstasy and dance euphoria, there is a persistent knowledge gap when it comes to this ‘mysterious’ disorder affecting over 50 million people worldwide at any one time.
What’s epilepsy anyway?
The World Health Organization defines epilepsy as a chronic disorder of the brain that is characterized by recurrent unprovoked seizures (brief episodes of involuntary shaking) due to excessive electrical discharges in a group of brain cells.
Some forms of epilepsy, like the one I had, come with something called aura, an event that can manifest as music, swirling colors, a memory, a sense of impending doom, a smell or taste, a rising nausea, or an intense sensation of déjà vu. My seizures came with ‘forced memory reruns,’ meaning I relived the same event every time I had a seizure.
There are different forms of epilepsy, ranging in severity, frequency and accompanying symptoms. Although I was fortunate that mine was tied to prepuberty and the early teenage years, its impact on my life continued long after I stopped having seizures.
What is it like to have a seizure?
You’ll get a different answer depending on who you ask because experiences vary greatly. I had my first seizure in 1994, when I was 9 years old. Although it was two-and-a-half decades ago, I still remember this moment as if it were yesterday.
It happened very early in the morning when my arm suddenly began to feel weird. It was unlike anything I’ve experienced before and I still don’t know how to describe it accurately. I wanted to call my parents for help but I was unable to form words (like in those nightmares where you can’t run or scream when you’re in grave danger), and within seconds I was trapped in this aura state.
These auras were nothing short of terrifying. Taking the risk of sounding loony, it was always me swimming in a river against the strong current desperately trying not to drown. Then I saw my grandmother’s face telling me that it’s okay to let go. To make things worse, the aura stopped only when I let myself drown.
As I regained consciousness, I noticed I was paralyzed. I couldn’t even lift my arm (each time I had a seizure it took about two hours until all body functions were back to normal; I missed a lot of school because of it—it always happened early in the morning). My parents woke up from the noises I made and were immediately at my bedside (yes, my bunk bed turned into a rapid river—imagine the sleep problems I’ve had ever since).
I told them I was unable to walk on my own, but they didn’t believe me (and I don’t blame them), so they put me on my feet and let go. I would have fallen flat on my face if I hadn’t crashed into the coat stand.
Growing pains, vitamin deficiency or a brain tumor, maybe?
The process of getting a diagnosis back then was a lot like an episode of House. Initially, doctors didn’t know what was wrong with me—likely an ‘anomaly in my growth’, they said, more vitamins might do the trick.
They didn’t. My seizures became more frequent, leaving me too scared to sleep—which was a predicament in itself because the sleep deprivation increased the frequency of my seizures.
“It could be a brain tumor.” Words any 9-year-old wants to hear. Just the thought of it made my brain hurt, and to top it off, the MRI machine gave me claustrophobia.
After that I had my first of many EEGs (short for ‘electroencephalography’, the measurement of electrical activity produced by the brain), which finally resulted in the epilepsy diagnosis.
I really despised those EEGs—all the gel they put on my head and the rubber cap they strapped tightly around my face. I felt like I was being strangled. Oh, and then there’s the EEG where they sleep-deprive you and expose you to strobe lights to see if it induces a seizure (which it does in some cases).
Pills were my treatment. I needed to take three tablets a day religiously to finally make the seizures stop. In the beginning, there were days when I broke down crying because I couldn’t remember whether I had taken them—too few would bring back the seizures and taking too many could have had severe side effects.
What was it like to live with epilepsy?
As hard and scary as it was, it was also transformative. People didn’t know much about epilepsy back then and had rather cruel misconceptions about it.
I remember when I was in church summer camp… one night I suffered a seizure which woke everyone up. While my best friend took care of me, everyone (including the adults who knew I had epilepsy) just stared like I was some kind of freak. The next day, the other kids wouldn’t stop talking and laughing about me. It was so humiliating and ultimately the beginning of serious depression. Honestly, some days I just wanted to die.
Back then you suffered in silence. I didn’t know anyone else with epilepsy until one day in High School when I was asked whether I might be willing to talk to a classmate of mine who was going through the same thing, because they worried he was on the verge of taking his life.
Another memorable experience was when I had to learn first aid as part of my job education. We were given a brief introduction on how to help someone who suffers an epileptic seizure (knowing what NOT to do is important for keeping a person safe during or after a seizure). That was when the classmate I had a little crush on announced to everyone that people with epilepsy are ‘dumb’ because ‘their brains aren’t working properly.’
Quite the slap in the face. Even though I was shy and normally didn’t contribute much to the classes, it angered me enough to speak up. “I have suffered many epileptic seizures in the past and I’ve always been an excellent student, do you really think I’m dumb?” In fact, I graduated top of my class—thank you very much.
In the end, the guy apologized and asked me out on a date. Most importantly, for the first time in my life I realized that I’m actually capable of standing up for myself and the causes I believe in.
Life after epilepsy
Although I had my last seizure many years ago, epilepsy still affects my life. The experience of being ridiculed for having seizures ate up my self-esteem. It’s been a very long, rocky road trying to go back to being my former adventurous, independent self.
The circles under my eyes are a visible reminder of the constant sleep deprivation I forced onto myself and because of the auras in which I ‘drowned’ every single time, I’m such a terrible swimmer, I usually avoid it altogether.
Every time I feel a tingle in my arm I panic for a second because this was where the seizures started.
I’m slowly getting past all these fears and lingering emotions but it’s a sometimes frustrating journey.
Social stigma and what to do about it
It’s been 25 years but people still don’t know much about epilepsy or have misconceptions about it. I hope in coming forward with my story I can encourage others to do the same, but also encourage you to speak up when you hear false information or when someone is being ridiculed. Become an ally by:
- taking some time to educate yourself (check out the resources below).
- spreading the word!
- donating time or funds to help raise awareness and support epilepsy research.
- supporting authors like me who use their books to make a difference.