I had my first epileptic seizure looking in the mirror.
It was a Sunday night and I had worked 8 hours at my part time job, and being exauhsted from partying the night before- taken a few energy 'supplements' mixed with an energy drink.
I'd spent an hour or so when I got home, meticulously colouring my hair for my year 12 school photos the next day. Until I woke up on the floor of the bathroom "How did you manage to fall asleep on the tiles??!"
I felt panicked not remembering how I got down there. I remember grabbing at the walls and door to pull myself up and walk, like I was half asleep. I managed to stumble into the lounge room and tried to speak, but just as I was about to fall again, my Dad jumped to his feet and scooped me up like a baby, heading straight to the car.
Mum told me later I came into that room covered in blood and still naked, stumbling like a zombie trying to say "help". When we got to the emergency department, Dad later said the admissions clerk saw him rush in holding a 17yo girl like a baby wrapped in a blanket and waved him through.
I remember the nurse asking me those 'few easy questions' they always do when you go into Emergency. What's your name? Easy. Who are you with? Easy. Where are you? ... Wrong. What day is it? Wrong. What's the date today? Wrong. What year is it? Wrong.
By now I was hysterical and had no idea how I couldn't know where I was, what day, date or even year it was! I was off by at least 7 years, and still felt weirdly delirious. I had a sudden sinking feeling that I was never going to know these things ever again.
Hours passed after I was admitted, and I woke up from sleeping. By this time it must have been at least 3am. My Dad was beside me and I felt immediately safe. I asked him what had happened.
He half smiled and said I had asked that a few times now, but that I passed out and hit my head pretty hard, but I was okay. I was happy to report that my memories were slowly coming back and I could recall a few things I couldn't before. Memories slowly fading in from black. And almost in perfect concession. Like a movie of my memories playing quickly in reverse, up until I could remember what I did that day. Then finally what actually happened.
As quickly as the memory of myself seizing reappeared in my head I had told my Dad I remembered. That I had a seizure, and I know because I was looking at myself in the mirror. All my muscles started twitching and I went rigid and fell. I still remember that feeling of fear as I started twitching all over and was unable to control it. I could feel my brain making my body move and I couldn't stop it. I had the weirdest warm feeling and could taste metal. And when I fell it felt like I was dreaming and falling in slow motion into a pool.
Occasionally over the previous few years when I was really tired or stressed, I would have these awful electric feeling zaps in my brain that made ALL my muscles twitch in unison and caused me to drop things/trip over. I honestly thought it was normal and I was just tired, like when you're falling asleep and twitch suddenly. So I never mentioned it to anyone ever.
I realise now it's different because I was awake.. and it was very painful. (🤦🏻♀️ Idiot) Dad called the nurses over and I told them what I could remember. I was immediately dismissed with 'No we are almost certain you just passed out, just let us do some tests'. Dismayed, I ended up leaving the emergency room that morning with a diagnosis of a concussion resulting from passing out and a few test results showing nothing.
My next seizure I broke my nose and nearly drowned on my own blood. It took months and dozens of admissions and tests (brain scan for potential tumor is fun) until finally I had an electroencephalogram or EEG, to specifically test for seizures.
Hundreds of otherwise happy, healthy, seizure free Australians with epilepsy die suddenly and unexplained every year. Sudden Unexpected Death in Epilepsy (SUDEP) can occur in anyone with epilepsy. Those who havent had a seizure in years, with no other underlying health issues, who eat well and are fit.
Epilepsy is a hard diagnosis, its complicated and confusing to understand, a little taboo, and changes what you can do and who you think you can be. I'm scared to be alone sometimes in case I have a seizure. I'm scared of feeling tired. I'm scared I could hurt someone else or myself by having a seizure. I'm scared one day I won't wake up.
Thank you endlessly, Mum and Dad for being the ones in those early days that me me feel completely safe and cared for.