'Epilepsy is my 'thing', but I won't let it define me.'

By KATE GINNIVAN

I was diagnosed as Epileptic at 19, but only truly accepted this label two years ago.  I decided to go alone to see the neurologist; I guess it was part of the denial.  I was so geared up to hear that my latest seizure was “just one of those things”, that I thought I would be jinxing myself if I went along with supporters.

I don’t remember much of what was said, but I do know I walked out, got some KFC and cried between bites of my burger.  That summer, I spiralled into a depression, convinced that all the crying was a reaction to the medication.  When my parents came with me to sort this out with the neurologist, Dad almost choked the doctor when he explained that Depression is not part of the Epilepsy equation – that was simply manifesting simultaneously.  Awesome.

I sought counselling, word-vomiting my feelings out in stilted burst, but I refused to persevere.  I took myself off meds because I hadn’t had a seizure in three years (YOU WERE ON ANTI-SEIZURE MEDICATION, IDIOT!) and I was moving overseas.  Long story short, I had five Grand Mal seizures in those two years abroad.

In 2005, I went to Egypt.  The journey from Cairo to Aswan involved bomb sweeps, as well as a police escort through one particularly dangerous area.  I had to sit next to an armed guard who was carrying an Uzi.  He drifted in and out of sleep, his temple rested on the barrel, his fingers too close to the trigger.  I stared, my imagination going haywire: we are going to hit a pot hole.  He will accidentally pull the trigger.  I’m going to die on a bus in the Egyptian desert.  THIS IS NOT HOW I WANT TO GO OUT!  Screw this, I want to go back to London; I want Starbucks; I want to eat a meal that I haven’t seen crows squabbling over before it makes it to my table.

I could feel the first seizure coming; I hear what sounds like a train horn and see a starry aura.  I must have taken two steps towards the shade before I dropped.  When I came to, only the Egyptian man picking the gravel out of my bloodied knuckles was audible.  He was yelling for the whole world to hear.  Maybe he didn’t think I’d drawn enough attention to myself.  He wanted me to remove the towel from around my waist because it was a “pool towel only” and it was not to leave the area.  My boyfriend told him very politely to “piss off!” and dragged me back to our room.  That night I had a second seizure and dealt with this the only way I knew how: I emailed home, finding the comedy in the drama, using humour to mask my sadness.  When I eventually returned to Australia, I reluctantly went back on the meds.

The funny thing about Epilepsy is that it is probably the only condition that is scarier for the witnesses than it is for the sufferer.  I obviously can’t speak for others, but it is seeing the terror on the faces of my friends and family – when I come to – that upsets me the most.

In March 2011, I drove myself to the medical centre (where my fairy-godmother works) because of a bout of chronic Tonsillitis; I had a Grand Mal seizure in the middle of the waiting room.  When I came back from the strange black world of ringing bells and eerie whistles, I could see my fairy-godmother’s hand holding my own; I recognised her engagement ring.

“Damn you Katie-Potatie!  I thought you were dying on me.  DON’T SPEAK!  Just…just know that I was trying to figure out how to tell your mother that we’d lost you.”

The doctors shot me full of penicillin and asked about my medication.  Sheepishly, I admitted that I wasn’t taking it because I wanted to be drug-free for the baby I dreamt of creating one day soon.  Tactfully, it was pointed out that if I was to have a seizure while pregnant, starving the baby of oxygen would be a far greater risk than having anti-seizure medication in my blood stream.  I decided then and there to stop fighting – the label, the drugs, the doctors, the inevitability of seizures – everything.  I have come to accept that Epilepsy is my “thing”, but it doesn’t define me, because I won’t let it.  It has taken YEARS to get to this point, but I got here nonetheless.  I owe it to my future children to keep me safe, to keep them safe…

Kate Ginnivan is an English teacher by day and a blogger by night.  Check out her blog, It Can Be Complikated, here.

Today is Purple Day – a global effort dedicated to raising epilepsy awareness. You can go here to donate.