To begin with, I’m happy you’re reading this. I had been thinking of creating this for a while and finally had a lazy Sunday to begin writing. This is a blog that will be about my life and the challenges of being epileptic as a young adult.
I was diagnosed with epilepsy in early 2009. It began after a bought with the flu, which kept me at home, in bed, out of school for three weeks prior. On my first day back, I was getting ready in the morning. At that time, being a fourteen year old, I spent a lot of time straightening my hair, which was what I was doing right before my (presumably) first Grand Mal seizure.
For those who don’t know much about epilepsy, here’s a brief explanation: epilepsy is a neurological condition that manifests in many ways, brought on by a surge of neural firing in the brain. Seizures can manifest in big ways, like the seizures you see in movies (Grand Mal/Tonic Clonic seizures) and little ways (Focal/Petit Mal/Absence seizures). Some people space out, make repetitive motions, feel a sense of deja-vu, smack their lips, or just feel funny for thirty seconds to two minutes or so. Then there’s the big ones; full consciousness lost, eyes rolling back, grunting, body rigidness, loss of bladder control, and shaking. The stuff most people imagine when they hear the big E word. The fun stuff that I got to experience for the first time that day.
One of the most asked questions I get when I tell people I have seizures is “What does it feel like to have a seizure?”. Which is a great question with a pretty disappointing answer: almost nothing. The fun part lies in the moments immediately prior to a seizure. I’m one of the lucky(?) ones who experience an aura prior to a seizure. This is a mixed feeling of slight panic, nausea, chills yet also overheating at the same time, the-room-is-spinning-oh-my-god-it’s-happening-isn’t-it-why-can’t-I-feel-my-legs?? Then my eyes focus on a single spot, usually a light or picture, and then the room goes black.
Which takes me back to my first reported Grand Mal seizure. I was getting ready and all of the aforementioned feelings washed over me and I was freaked out. But the weirdest part is, when you’re feeling all of those things, you also can’t really talk. I can’t speak for everyone with seizures because every case is different, but when I have an aura, my communication skills fall apart and I’m stuck feeling all of these things but unable to speak up. So I stood in my bathroom, looking in the mirror, unable to figure out why I was feeling like my head was about to explode, when I blacked out.
When I woke up, I was lying on the bathroom floor. My head hurt, my body ached, and I was in a daze. My dad was at my side, obviously panicked, a man who is not easily distressed. The rest of the day is a blur now, but after a seizure, most people are groggy for a day or so. There was a trip to the hospital, MRI’s and other tests done, lots of questions from doctors I no longer remember, and I went home with a referral to a neurologist at a Children’s Hospital.
I’ll spare the details, but after a couple months of testing, there was still no diagnosis. Seizures can happen to almost anyone under the right circumstances and one seizure doesn’t mean you’re epileptic. It would take another year and another Grand Mal seizure to get that for me. And when I did, it felt nice to have a diagnosis in writing, proof that there was a reason for these incidents: Focal Epilepsy with Secondary Onset Grand Mal Seizures. In simple terms, partial seizures (ones you can’t see) beginning in one part of the brain that sometimes spread to the rest, causing the big seizures (ones you can see).
Eight years later, I’m in a much different place in life. I’m a teacher, working with twenty wonderful five-year-olds. I live away from home. But epilepsy is still a major part of my life. Not definitive, but definitely an obstacle.