October 11, 2019, started off like any other typical day. It was a crisp, fall day. It was Friday and I was looking forward to the weekend. I had oatmeal for breakfast. With blueberries. It was delicious. Shortly after that, I went with my friend to take Morrissey — our late flame point Siamese cat that we co-parented — to the vet. After dropping off Morrissey, we had some time to spare so we decided to grab some food, head over to the park across the street from the animal hospital, and have ourselves a little picnic while we waited for Morrissey’s appointment to finish.
As soon as we got to the park, I told my friend that I started to feel dizzy and light-headed. Everything started spinning. I don’t really remember what happened next. According to my friend, I got disoriented and I started staring into space. And then I suddenly fell down, hitting my head on the nearby picnic table. My body went rigid and I started convulsing. I was having a seizure.
About 20 minutes later, I woke up in the back of an ambulance, completely disoriented, with my friend by my side with two paramedics, asking me questions that I didn’t have any answers to.
I had a seizure before, so this wasn’t completely new for me, but it still hit me with a ton of bricks, especially since my previous seizure wasn’t nearly as intense as this one, which was suitably called a grand mal seizure.
My earlier seizure — which was my first one — occurred in August of 2013 in the middle of the Minneapolis airport. It was during a stopover, while I was vacationing with my family. We were headed for a cruise, which was leaving port from Florida. Or so we thought we were headed to a cruise. My brother and I were walking in the airport until our next flight when suddenly, I had these uncontrollable muscle movements.
My brother asked me what was happening and I told him I had no idea. I wasn’t convulsing, but it felt like I didn’t have control over my own body parts. It felt like I was a puppet and someone was pulling my strings. Then, I fell down but I didn’t lose consciousness. My parents screamed from the down hallway and ran over.
I was rushed to the Minneapolis hospital where they did all sorts of tests — CT scans, ultrasounds, bloodwork — trying to figure out what happened. They ultimately thought it was due to low blood sugar. But, the following day we flew back home to Toronto and we saw my doctor who referred me for an EEG and a sleep EEG, tests that monitor my brain activity while I’m awake versus sleeping. The results came back consistent with someone who has epilepsy.
As if life already wasn’t complicated enough after having a speech disorder, IBS, and mental health struggles, I had found myself with a new diagnosis as well.
Although, this was back in 2013, and over the years I hadn’t had any seizures and even though I was technically diagnosed with epilepsy, I didn’t really consider it to be a salient part of my identity.
But then came my seizure in 2019. It’s weird because, given my earlier diagnosis of epilepsy, it made sense, but the seizure still came out of nowhere and surprised the heck out of me! It made me start to rethink my relationship with epilepsy and, more specifically, start to identify more as someone who struggles with epilepsy.
Just like anyone with a chronic disability, in the months that followed, my epilepsy started to impact various parts of my life and I started to make some much-needed changes. I started taking an increased dose of medication. I stopped drinking alcohol (I haven’t had a drink in almost two years!). I started to make sure that I get enough sleep every night. I started wearing a MedicAlert bracelet whenever I go out.
When you have a chronic disability like epilepsy, you also have to accept the constant vigilance of everyone around you. Basically, people start treating you like a child. Every two minutes, my fiancée, my parents or my brother would check in on me asking how I’m doing. When my parents call me and I don’t pick up, they assume the worst and insist that I call them back. “No, mom, I didn’t have a seizure!”
Having a disability is also a very individualized experience. What I mean is, no two experiences even with the same disability are the same. My experiences with epilepsy are vastly different from other people’s experiences with epilepsy. For instance, in 2020, I joined a peer support group for people who have epilepsy and I met someone else with epilepsy who has multiple seizures a day. But me? I’ve only had two seizures, six years apart, in my entire life. Hell, sometimes, I feel like I’m an outsider, even within the epilepsy community.
Then there’s the combination of epilepsy and anxiety. Because one of the scariest parts of having epilepsy is not knowing if you’ll have a seizure. Those damn “what if?” thoughts again. What if I have a seizure? Where will it happen? At the park? In the middle of an airport? And if there’s anything that people with anxiety love, it’s uncertainty.
This was also a concern for my parents when I moved out of my apartment with my friend (the one with whom I co-parented Morrissey) and found a place of my own. You see, this was the first time I was living on my own. So naturally, my parents were concerned. What if I have a seizure and no one is there? Ultimately, my need for independence outweighed the risk of a seizure and my parents admitted defeat.
However, the concern about having another seizure remains. It’s there, and I can have a seizure anywhere and at any time. But when you have a chronic disability like epilepsy, it’s about knowing the risks and taking the steps needed to reduce those risks. I haven’t had a seizure since my park seizure in 2019 and hopefully, it stays that way.
