I’m writing this sat on a park bench, bathed in beautiful sunshine in Kraków, Poland. I am alone, I am epileptic and I am unafraid.
I’m looking out over a flat playground where only the birds are laughing. It’s a delightful sound. Soon it will be replaced by kids, but now I’m content to listen to the sounds of nature. Content and hopeful, I’m reminded again of how lucky I am. Of just how many of these moments I’ve experienced in my life. Having epilepsy has in no way diminished my life. I simply won’t let it. Yes, it gets me down sometimes, yes I feel afraid sometimes, yes I feel depressed sometimes. None of that is unique to having epilepsy.
The day after I landed in Kraków, I headed into the Tatra mountains which form the natural border between Poland and Slovakia. My intention was to stay in Slovakia for a couple of days before returning to Kraków. The weather was terrible. Wet, foggy, stormy and the stunning vistas I was hoping for were there, but hidden from view, so I returned to Kraków the same day. However, I was still able to ride the funicular up to the top of Gubałówka mountain which lies above the small town of Zakopane on the Polish side of the border. Drinking grzane piwo and buying tourist tat. Grzane piwo is a mulled beer that’s served hot, in the same way as mulled wine. I’ve never seen it anywhere else, but it’s popular here. Having epilepsy does not stop me from trying new things, seeing new places and experiencing wonder.
I’ve talked about ‘moments’ before. The vast majority of mine have happened while I’ve been travelling. It saddens me that sometimes a diagnosis of epilepsy is not accompanied by a strong reinforcement that it is not the end of the world. It is not a case of ‘abandon all hope ye who enter here’. Epilepsy becomes part of your life, in much the same way as any chronic condition does. Epilepsy does not remove free will. Epilepsy is not the end, merely the beginning of a new chapter and the chance to discover a strength within that some others never find, because they don’t have to. I’ve used my epilepsy to motivate me. I’ve taken those wayward electrical charges and plugged them into my soul. They light up the areas in my soul that crave wonder, that crave travel, that crave moments. Yes, sometimes the lights go out and I feel the darkness, the fear, the terrible crushing feeling around my heart. But, when the lights begin to come on and I can see more clearly, then life comes into focus again.
One of my favourite travel moments, if it’s at all possible really to rate moments, was when I did a tandem skydive over Lake Taupo in New Zealand. Me, my boyfriend and my bf’s brother all suited up, in a small plane, 12,000 ft in the air, each of us strapped to an instructor. My turn. Sat on the instructors lap, legs dangling outside the plane. Just rock forward he said. The adrenalin rush at that split second as we left the plane and entered that point of no return was nothing short of euphoric. Fear was replaced by freedom. Complete freedom from everything. Nothing mattered. Why would it. I laughed, giggled and waved at the guy videoing the jump. Happiness, freedom, adrenalin, euphoria rushed through every single fibre in my being. I felt truly alive. Cobwebs were being ripped from my mind as I fell through space. Time didn’t matter. Why would it. Epilepsy didn’t matter. Why would it. It was just me, being. When we landed, I was jumping up and down, I felt free and I didn’t want that feeling to end. I wanted to fly again. The feeling is addictive. I think I’ve been trying to recapture those brief moments of pure, unadulterated joy ever since. Free as a bird. I think that jump enabled me to feel what it’s like to live in the moment. The past doesn’t matter, it’s done. The future doesn’t matter, it will take care of itself. All that truly matters is the moment, the present.
I’ve never experienced a seizure while I’ve been on a trip. I wonder if that’s because I don’t feel stress travelling, only curiosity and wonder. I’m glad that I was encouraged to believe that epilepsy could be part of my life without it taking over my life. I’m grateful for the people I have in my life who support me and who provide the network that catches me when I fall.