Beyond IS: Fuck Epilepsy

Fuck Epilepsy. That was the theme this weekend.

Sometimes that’s the only thing you can say.

For those who know Emma’s story, she’s been living with epilepsy for her entire life and there have been many peaks and valleys in her journey.

At times, epilepsy took days away from her. Other times, she would go days without having a seizure. At its peak, 9 months of seizure freedom.

And then, there are days like this last weekend where it takes over.

For the last year or so, Emma has been having seizures most mornings and then continuing her normal daily routine. While the thought of daily seizures is bad - and by no means do we want that - they haven’t affected Emma’s daily life. While there are times where her day starts at 3am, she’s able to go to school and engage in everything she loves without many knowing she was up that early and battling through a cluster.

However, as we have seen in the past, the evolution of her epilepsy continues.

Friday was one of those days. It started with intense morning seizures that were controlled in time for school. Then, as the day concluded, a call saying that Emma seemed off. She was in a cluster late in the day which was atypical. There’s the first FU moment.

Following her first aid routine - VNS swipes and recovery medication - still, no control. Enter a call the 911 and the second FU moment.

To say emotions were not high would be an understatement. The unknown of the next move. The sirens of both fire and ambulance. Chaos in a systematic few minutes.

A trip to emergency sadly isn’t a new experience for us. We know the drill and the protocols. We know we are going to be asked the same questions 5 different times. Yet, it never gets any easier. Again FUCK Epilepsy.

Two hospitals. Two ER rooms. Overnight admission at SickKids. An overall exhausting weekend.

That’s life with epilepsy. Even when you have plans, you have to be ready to say: Fuck! Epilepsy.