I had my first seizure at 24, standing at the till of the Fitzroy café I was working in at the time. I’d been out the night before and that morning, my arms would move in random, uncontrollable jerks. I had chalked these up to an unfortunate hangover symptom — one that made balancing coffee especially difficult. The next thing I knew, I woke up in the back of an ambulance having been given CPR by a customer.
From there, I set off on what would be two years of hospital waitlists, traumatised friends and family, bitten tongues, scratched limbs, and a constant internal battle between my health, my agency, and my youth.
The first thing to know before we continue is that I’m no doctor. I’m PEDESTRIAN.TV’s Native Editor and, though I’ve spoken with medical professionals throughout my health journey, you won’t find any medical advice here.
The second is that everyone with epilepsy or who experiences seizures has a different story, different triggers and different kinds of seizures. I have Tonic-Clonic or Grand Mal seizures, the kind you’ve probably seen in movies. I’m not triggered by flashing lights. Instead, my triggers are alcohol and sleep: two things that, for many twenty-somethings, seem to exist in constant opposition. The mindset was always, “I’ll sleep when I’m dead or when I’m old and boring.” This is a mindset that would prove problematic as my relationship to my brain and my body changed.
When I had my first seizure, I was told it’s not uncommon for people to have one without it necessarily leading to some big, scary diagnosis. In fact, while one in ten people in Australia may experience a seizure in their lifetime, only one in 26 will be diagnosed with epilepsy. So, despite the drama of the day’s events and much to my family’s dismay, I spent the next nine months operating as normal — even going so far as to get my scuba diving licence without considering the literal life-or-death risks involved.
When a second seizure hit the following January, it became clear this was not a one-off, and I began the slow process of figuring out medication and lifestyle changes.
As a then 25-year-old who was convinced that my late twenties were old age and the end of all things fun, I was terrified. The blow of a second seizure wasn’t just the realisation that my brain and my body weren’t operating “normally”, it was a fear that these years reserved for friends and fun were suddenly at risk.
It may seem like an easy decision: stay home, sleep more, drink less and I’m less likely to have a seizure. For my friends and family, especially those who had been through the deeply traumatic experience of seeing my body fail me, the decision seemed understandably clear.
But I was also grieving my loss of agency over my body. Beyond the obvious loss of physical control, I was now unable to drive. I was starting on a long journey of medications, which carried side effects like memory loss, fatigue, depression, and a fun medical phenomenon a doctor called “The Keppra crankies” — which manifested as two panic attacks in a fortnight.
The thought of my social life and identity as a fun, carefree person disappearing was a pill I wasn’t prepared to swallow.
The sad truth is that, for many people with epilepsy, these parts of life can be made harder.
For those lucky enough to find a medication that works for them, the side effects are likely to knock you around and take the wind well and truly out of your sails. You’ll probably miss some events and have to dig deep if you want to turn up in the same way that others do.
For Australian sprinter Georgia Harris, her epilepsy journey motivated her through her training and brought her to tears as she won her first 100m national title.
“The pills I’m on make me more tired than the average person,” she said. “Some days I’m full of energy and some days it’s like I’m hit by a wall. Literally.”
For a long time, I endeavoured to follow Hannah Montana’s guidance and have the best of both worlds: living the carefree 20s I had expected, while running a careless and constant low-level risk of seizure — a risk that didn’t just affect me but everyone around me. But after a particularly brutal New Year’s Day, I had to accept that my brain did not behave as other brains did, and my health wasn’t something I could keep sweeping under a rug. The rug was lumpy and I had well and truly been tripped up.
My twenties aren’t and now will never be what I pictured. I sometimes have to miss an event or work from home. I still get anxious when I see ambulances, but since this is an article and not therapy, I don’t think we need to go too deep into that one.
I’ve learnt not to sideline my health for a youth shown to me on TV, set in bars, as something to aspire to. Hell, the cast of Friends spent every damn day in a café and they seemed to have a great time. Instead, I surround myself with the kind and loving friends and family who have been patiently waiting for me to catch up since that first day I went down in Fitzroy.
The post I Knew Epilepsy In My 20s Would Be Hard, But I Didn’t Expect It To Kill My Social Life appeared first on PEDESTRIAN.TV .
