International Epilepsy Day: from Ireland to Australia with refractory epilepsy

The Real ‘E’ Word was a blog that documented Maria Elizabeth’s twenty-one year journey with refractory epilepsy. Despite a diagnosis of Focal Cortical Dysplasia, she tries to remain upbeat, but real. Born in Northern Ireland, she has travelled extensively, including living in Australia for most of the last decade. When we connected in 2018 she was working on a doctorate and was passionate about supporting others on their epilepsy journey.

Part of living well with epilepsy, of living life with it, is coming to terms with the limitations of the diagnosis. It seems like an obvious statement; epilepsy is life-altering.  Limitation should be a familiar experience to us veteran patients. In many ways, twenty one years into my epilepsy journey, I am accustomed to it. The practical lifestyle adjustments it requires are routine.  I barely notice that I formulate an unconscious exit strategy every time I am in public. By now, it’s easy to unemotionally intellectualise swim safety and the presence of an anti-suffocation pillow on my bed.  Dozens of other mundane, epilepsy determined choices hardly feature on my radar.

But it’s not the pragmatics of day-to-day life, that I speak of.  It’s the larger limitations, those that have implications on sense of self, that prove more challenging.  Oftentimes there emerges friction between our individual potential, and our epilepsy reality.  That ongoing identity negotiation is, for me, the most challenging aspect of living with epilepsy.  Epilepsy is a never-ending exercise in perseverance and strength of character.  What I am guilty of overlooking, is that my greatest limitations have often been the source of my eventual fortitude.