No biking, no swimming, no driving, and don’t even think about having fun! That’s how a conversation with an epileptologist sounds. (They don’t actually say the “no fun” part, I just interpret it that way.) Reading alone? No, you could suffocate in your pillow! Soaking in a Jacuzzi? Do you want to drown? Repelling from a 50-meter waterfall? Ha, don’t even think about it! Honestly, I only got an eye-roll from my doctor when I mentioned repelling down waterfalls, so I took this as an off-record approval and booked a weekend getaway with my husband and friends to Bled, Slovenia. My goal: be brave and adventure!
We booked a private canyoning trip with an experienced guide. My husband and I were nervous for two reasons. First, we aren’t athletes and canyoning is an all day event. You wake up early, eat protein bars, hike into the canyon (might I add that the hike is up a mountain in a wet-suit) and then, like a crazy person, you boulder your way down; jumping off big rocks into freezing cold water and repelling down steep cliffs and waterfalls. When I say it aloud, it actually doesn’t sound safe for even the strongest of athletes! We must be crazy!
The obvious reason we were nervous is because of my epilepsy. I can’t help but think, “what if I have a seizure right now?” when I am in a potentially dangerous situation. Especially because losing consciousness at the wrong time means I could really hurt myself, or worse. But as my readers know, I’ve learned that I can’t let that fear dictate my life.
As planned, we woke up early Saturday morning and hiked up the mountain in our rubbery wet-suits. I was exhausted by the time we reached the top! My calves ached and my heart was racing, but I was so excited for the adventure to come I still felt energized and ready to go. We jumped, slid, and scrambled down boulders like pros, or so it felt! The sun was shining, the air was brisk, and we were all smiles! Of course my mind drifted to the “what-ifs” but I didn’t let it stop me from taking the leap and enjoying the moment. And then, I fell. In fact, I wiped out and ended up face down in the river. I jumped up fast but could already feel a boulder size bruise developing on my thigh. My husband’s eyes were wide with the “was that a seizure, or are you just clumsy?” look. I was 75% sure it was just a slip, but to be safe I took a long time to gather my thoughts and guts before I continued.
The rest of my climb down was safe and fall-free, other than the intended falls! The grand finale was repelling down a 50-meter waterfall! I opted for the “floating down” option, allowing our guide to support 100% of my weight, instead of taking the rope in my own hands. It was a safe choice for those that could have a seizure at any moment! Slowly gliding down that waterfall, entrusting my life to a thin rope, was incredibly exhilarating. I felt safe but also felt anything could happen. The day’s adventure wasn’t just about canyoning; it was about ignoring my fears, the “what-ifs,” and experiencing the day with an open heart.
I’m Maureen, and I have epilepsy. You’re probably reading this because either you have epilepsy, or you love someone that has epilepsy. Whatever sparked your curiosity, I am happy to be sharing my experiences with you. From having seizures in foreign countries to begging pharmacists that don’t speak English for medication, I can definitely say that it’s been an interesting journey. Hopefully reading about my ups and downs, and my everyday and not so everyday adventures will inspire you too! Welcome to my life of living well with epilepsy!
So cool! Adventure doesn’t end with epilepsy…that’s a message I’m trying to instill in to my son, too. Hope the bruise healed (after you got to tell everyone about how you got it, of course)! ~Dave
That’s great to hear, Dave! Being a supportive and encouraging caretaker is no easy feat. Your son is very lucky to have a parent that channels so much love and energy into his well being. Keep it up!