No biking without parental supervision, no swimming without lifeguard supervision, and all adventure sports are completely out of the question! Say goodbye to spending time alone because it is far too dangerous! Being diagnosed with epilepsy comes along with a list of things you can’t do; ranging from potential careers to leisure activities. One of the worst “can’t do list” is your extracurricular activities and sports.
This post is part of the Epilepsy Blog Relay™
As a teen, newly diagnosed with epilepsy, I was so afraid of falling over at any moment I actually had no desire to be center forward on my soccer team. The last thing I wanted was to have a team rely on me when I couldn’t rely on my own body to preform. But, that fear of the unknown changed when out of the blue I had a drop seizure on my way to class. I realized it doesn’t matter if I am sitting on the couch, walking to class, or playing soccer for that pesky twitch to knock me off my feet. So I thought, “what the heck” and decided to step out of my comfort zone.
Stepping Out of My Comfort Zone
I started biking the hills of San Francisco. I would sweat and pant myself up Twin Peaks and then glide down as fast as I could, keeping pace with the traffic. Cars were less than an arms length away as I raced down Market into the Castro, fearlessly zipping in and out of traffic as if my body were an armed vehicle. Visions of falling to a gruesome death and being swept away by traffic flashed in my mind, but my new found sense of freedom was overpowering. I swam my first unsupervised lap in 5 years at 24 hour fitness in the Sunset. Thoughts of a newscaster reporting, “girl has seizure and drowns” flashed through my mind. I didn’t have a death wish but the reality of epilepsy’s consequences still weighed on my mind. However, the overwhelming desires to be “normal” and do “normal” things allowed me dive in.
Doing everyday activities on the “can’t do list” made me feel adventurous and liberated! It was a carpe diem epiphany. For me, it seemed riding my exhilarating bike ride was equivalent a to what a person felt skydiving! This raised the question, “what would it be like to skydive?”
Taking the Leap
I had to do it. But people with epilepsy aren’t allowed to do such wild things. They say the risk of having a seizure while strapped to another person; free-falling from 10,000 feet is dangerous. I knew it was unfair to put another person’s life in jeopardy for my newly found confidence, so I confessed my twitchy secret to the German man that would be strapped to my back, Lutz.
Lutz’ English was mediocre at best which made a game of charades necessary for explaining that I have seizures. But we figured it out and he even put his finger to “shhhh” his lips to confirm it was our little secret. It was happening! Getting into the plane my heart started to race. All the “would ifs” started flashing through my mind but I pushed them away. Lutz was confident in me. I should be confident in me. So I smiled, took a deep breath and jumped!
A Risk Worth Taking
Can you imagine the adrenaline rush!? Free falling, laughing, screaming, conquering your fears, and entrusting that pulling a string will open a parachute that will safely float you to the ground. More importantly, can you imagine epilepsy not standing in your way?
What have you done to step out of your comfort zone while living with epilepsy? What do you wish you had the confidence to do? Share it in the comments below.
Don’t miss tomorrow’s story in the Epilepsy Blog Relay™.
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!
I also got into biking on the road and in the mountains after my first brain surgery which was for a brain tumor. Also being from the Bay Area, I did my first metric century ride in Danville, the Cinderella Classic. Then came a move out of state, and shortly thereafter an Epilepsy diagnosis, and two more brain surgeries. As motivation to heal, my family bought me a beautiful pink road bike, which was waiting for me when I got home from the hospital from my right temporal lobe resection. That was 13 years ago, and I’m still riding it! I don’t let the Big E hold me back!
Good on you !!!
Sounds like you very much have the right attitude.
There’s no use living in a box is there.
I had 2 brain surgeries and lots of seizures but I played football in middle school and in high school I was one of the captains. I’ve gone on a lot of intense roller coasters and I’ve also gone skydiving twice! It takes a lot of courage to do what you’ve done. You’re really inspiring. Thank you for writing about your experience.