“I THOUGHT I lost you.”
These were the first of the many last words I’ve heard as I slipped in and out of consciousness because of my condition. Struggling with a seizure disorder is not as black and white as it sounds—it’s not as simple as taking medications and avoiding flashing lights to keep the brain healthy. Rather, it’s also a constant fear of social stigma, anxiety, and death that rots the brain inside out.
My relationship with my brain has been a complicated one. On the one hand, I’m thankful that I’m able to have the mind that I have, the thoughts that I think, and the feelings that I feel. On the other, I hate that I constantly have to take medications for a disorder I never asked for, take extra precautions my friends don’t have to, and fear that I might close my eyes and wake up on another hospital bed.
Back in high school, I had a classmate who suffered from the same disorder. The only difference between the two of us was that he told our class while I kept it secret. Every day, there would be a new joke about his condition—they would tease him with the lights, liken him to a fish flailing without water, and laugh at his abnormality. This was where I learned that it’s dangerous to not be normal.
When I first learned about my seizure disorder, I was playing video games in my room with my sister. I was a little short on sleep, but it was still a normal day of us gaming and playing Pokémon. According to my memory, I took a long blink to rest my eyes. But, the next thing I knew was that I woke up in an ambulance—my mom at my side, oxygen being pumped into my lungs, and an unprocessed confusion in my body that made me cry in fear.
My mom said, “I thought I lost you,” with tears and panic on her face. In retrospect, it was quite traumatic hearing that you were this close to knocking on death’s door. You’d think that dying could be something a little more predictable, like old age. But, that day, I learned that death could happen to anyone, anywhere, anytime, and I told myself to always live life to the fullest.
Despite that, I didn’t tell anyone about my condition in fear of being the butt of the joke, just like my old classmate. I would take my medications in secret, party like there was no tomorrow, and stay up until the ungodly hours of the night with my friends. After a year of being medication-free, I felt invincible. I did things that I couldn’t normally do like party in clubs and ride on roller coasters, and eventually I forgot I even had my condition. But, that’s how I learned an important lesson—that even if the mind suppresses memories, the body remembers trauma.
In 2021, I went out on a trip with my closest friends. The day was normal, and we were ready to play mahjong and make core memories. Little did I know, I would become the core memory. In true déjà vu fashion, I was a little short on sleep and decided to take a long blink—I’m pretty sure you know what came next.
I woke up in an ambulance, with my friend’s hand on mine calming me down with a damaged smile. “Not again,” I said to myself as my body contracted and my eyes teared up from the fear of dying again. I most certainly conditioned myself to forget that I went through something like this, but the feeling in my body was all too familiar. I didn’t like it—I despised it—but now I’ve realized that this is a part of me.
Perhaps the uncertainty of death comes to me in the form of my disorder. It’s a blessing and a curse to be aware of it as it teaches me to live life to the fullest. But, am I living life to the fullest in hopes of making today matter or in fear that there won’t be a tomorrow? Every day I wake up to a bed and thank God that it isn’t a hospital bed again, and every day I relish the fact that every blink isn’t the last one. When you’re more aware of the things that make your life worth living, then no bodily disorder can hold you back.
My advice? “Seize” the day as they all say. And, make sure that even if you’re unaware that you’re living the last day of your life, you’re living your life happily and making every second matter.
