FRAN: Hello adventurers, I am Fran Turauskis, and you are listening to a bonus birthday episode of Seize Your Adventure. For 2 years, this podcast has been sharing stories from adventurous people with epilepsy. And making this podcast has taken my life in a direction I never thought about. I have learned to make a number of different types of episode on this show. This series, we’ve had a lot more chats with new adventurers - and these chats are so much fun to have. Being able to connect with people who fit into a niche that - let’s face it, none of us really want to be in! If we could adventure without epilepsy, that would be awesome… But I do think that people that occupy this little niche tend to be pretty incredible. The people I have spoken to astound me and encourage me to try new things (including making my first ever running race an ultramarathon, as you do!)
But, my favourite episodes to make, have to be the storytelling episodes. They are very labour intensive, they can take months to write, record and edit together, pick the right music and making sure the narration fits into the rhythm of that music.
So, we haven’t had a storytelling episode in Season 2. But, I’m very happy to be able to bring you this bonus by Jade Nelson.
Jade approached me with this story at the end of 2019… so for one reason and another, it has taken a year to pull it together. But this story is meaningful now as it was when it was written. And at a time when many are confined by circumstance to adventures closer to home, there are some great lessons for us to hear as well.
JADE: Each morning for the past 4 years I drove to the park with the dogs. We hiked the trails of Onion Creek often trying to fit in exercise before having to take care of the days' responsibilities. Sometimes we would take our time at the Creek and get there before dawn, sitting in the darkness, listening to the water and watching the sunrise over the rocks.
During those silent walks, while Duke and Blue darted on and off the trail, I would think about my Epilepsy diagnosis. I asked myself often
[Echo effect] “how would you feel if you had a seizure again? Could you emotionally and mentally handle it? or would it feel like everything was falling apart? Would epilepsy have control?” [Echo effect ends]
Being seizure-free for those 4 years of my life had been pretty ideal. Aside from the daily reminders to take my medication and conform to a ketogenic diet, epilepsy hadn’t been actively controlling my life for sometime. It was a form of peace and it allowed me to live with more ease. I believed the train inside me called Epilepsy was silent. A Train was how my 8 year old self described what my seizures felt like. The loud sound in my brain as a seizure began reminded me of a train coming down a track. The building of a seizure inside left me paralyzed, like I was laying on a train track, trapped. The apex of the seizure was what I imagined being run over by a train might feel like... I hoped never to experience it again.
[Music - Guitar Drone by Toilet Roll Tube ]
Slipping out of the bathtub, onto the floor and into the seizure. I smell an undefinable smell, that weird tingle in my nose unique to me.
[Over the guitar drone is layered train sound effects, with the barrelling and squeaking of the wheels.]
I see the arcing sparks in my eyes, feel the deep heaviness of my right arm and the familiar sound of a train barrelling down the tracks heading straight for me. I let go. I let the seizure in. I have two thoughts. The first amusingly practical. “I am supposed to get on a plane in less than 24 hours to celebrate my 40th birthday in Maine.” The second philosophical “This feels different… where is the fear”?
The fear that normally grips me is missing.
It is weirdly peaceful.
Could this be a benefit of the ketogenic diet? A chemical change calming the fear and quieting the anxiety? Or has age and experience through past seizures simply brought [V2] a new understanding?
Perhaps it’s both of these things.
I find myself on the bathroom floor, trying to orient myself. The instinctual response-- “I need help” gives me focus. I start to drag my limp body, pulling myself into the living room, searching for my phone.
As I reached for the phone, a second seizure tears through me with the force of a freight train. My back arches and I am out of control as my face smashes down towards the cement floor. I am afraid now--
[Music and sound effects fade out]
And then it is quiet.
On the 21 of August 2019, I had two seizures. After the seizures, I woke up in a puddle of drool, my dogs looking at me. The room was spinning and my head was pounding. I could only think, “this really happened.” I sat on the floor in silence. No cry, sob or howl escaped my lips. The deep cavern of emptiness and animalistic cry that typically welled up in me after seizures didn’t come. Sitting on my living room floor after having two back to back, with Duke and Blue watching over me, I waited...
But I felt peace and I understood then that the recovery this time would be vastly different from the past. I realised that this recovery could look how I wanted it to and I was in control. I had all of my life experience, my nutritional approach and a magical mindset [V2] that I had honed and crafted since my diagnosis. I got up, and decided that regardless of the seizure I was going to catch my early morning flight to Maine.
When I returned from my trip, I went to see my neurologist. After the seizure, it meant no driving for 3 months. It meant hiring a driver and trusting someone to stick to my schedule . It meant taking the bus and learning to slow my schedule to the transit system timetable. I had to order groceries to be delivered and learn to have patience with details I have no control over.
Choices, sacrifices and life changes were ahead. And my activities and outdoor adventures with Duke & Blue were about to shift as well.
It was time to slow down, conserve my energy and allow my body and brain time to bounce back. I needed to focus on the acceptance of what was right now. Even if that meant more downtime closer to home.
Without the ability to drive, there were no more park trips with the dogs, and I missed the Onion Creek mornings: watching the deer in the field and wandering the trails in darkness; brushing spider webs off my face while Duke and Blue chased shadows in the bushes. So, we took jaunts through the neighborhood instead - out the door before sunrise, walking in the muggy darkness of the morning before the rest of the world was awake. When I was walking, I could focus on the peace around me, the quiet and slowly waking neighborhood. There was no rushing towards a good sunrise.
Together with Duke & Blue, we found a hidden RV Park, the local school with a huge field, and learned how to outrun a pack of dogs. Our favorite find was the tiny curved street that felt like we were walking into a dark forest. Each time we walked it, we rounded the corner and climbed the tiny cement hill that raised my heart rate ever so slightly. Duke and Blue would often find discarded food or their favorite tree to mark on, but I could imagine I was hiking in Yosemite.
In the evenings, after the sunset, we joined our neighbor Sybil on walks. She often told me she needed the exercise and I needed an excuse to get out of the house. Sybil lived around the corner and like me, she had two big dogs named Izzy and Mamas.
Sybil had always loved hearing about my adventures, my travels, my work and whatever exciting project I was working on. We were an interesting pair to see walking down the street. I have a fair share of tattoos, minimal make-up, hair piled [v2] on my head and look like I’m always in the mood to workout, constantly in my sports clothes. But Sybil is a hard core 80’s-era thrasher chick that loves heavy metal. She loves to wear black, always has a concert shirt on, rows of earrings in each ear. On our walks, she would carry a can of seltzer water in one hand, a stun gun in the other and pepper spray dangling from her keychain.
The neighborhood sidewalks were often cluttered with garbage and junk, and I would walk slightly ahead keeping an eye out for obstacles so Sybil wouldn’t trip. After my seizure my energy was lower, so Sybil often took the lead or slowed her pace to match mine. She had been the sole caretaker for her dad but the months of recovery [V2] from my seizure coincided with Sybil’s grief from her dad’s passing, and we often walked in silence in the cover of darkness, engulfed in the heavy August air. We listened to the nightly activity of our sketchy neighborhood. Sometimes it was fighting, fireworks or the occasional gun shot. Other nights it was complete silence.
We would break the silence to talk about loss, sadness and what we wanted in life and our individual futures. We were each other’s sounding board, armchair therapists providing support, healing and holding space for each other as we worked through our own personal changes in life. I shared the personal adventure of learning to understand my Epilepsy now. Sybil’s grief began to lessen.
[Strumming guitar music loop - Will it be always like this?]
These walks gave me perspective and reminded me that life isn’t a sprint, or even a marathon but a very long walk. I came to realize I had been racing through my life for the past 4 years trying to accomplish everything. Why? Because subconsciously I’d had a fear that a seizure was just around the corner and it would stop me in my tracks. But when my recent seizures came, it did not derail me Train Inside Me. It carried an opportunity to shift my approach to life. It focused my appreciation on different things - my neighborhood, the bus system, Sybil. It lets me see my diagnosis through a different lens. I no longer need to feel like I have to fight against the struggles I face after a seizure or my diagnosis itself. I have an understanding that it is simply something that happens and that a seizure isn’t the end but a reminder to slow down and stop rushing. It's my reminder that I may be taking on too much in my life, that I am not coping with stress well and that I need to slow down.
I will always have Epilepsy. It is like a train track running through the landscape of my life, and sometimes it will be quiet. But the Train Inside Me is more than a description I came up with at a young age to explain how a seizure feels to me. It signifies a constant determination to rise above the fear, disempowerment, and obstacles that come with life. It is the engine, the drive inside me that keeps me pulling even when the hills are high and the train is heavy.
FRAN: A Change of Track was written and read by Jade Nelson. Music was by Toilet Roll Tube, Joshua Empyre and Texas Music Forge on Freesound.org, and the train noise recorded by me.
Thank you for listening to today’s episode, that is the very last one of this Season. Season 3 is going to sound a little different, and the trailer for that will be out in March.Make sure you’re subscribed to the podcast so you don’t miss when we launch season 3 in the spring.
If you cannot wait until then, perhaps consider signing up as a Patron. So head on over to Patreon.com/seizeyouradventure for more information, Patreon is a website that lets you support creative ventures that you enjoy.
I’m currently getting $41 a month from Patrons and that is paying for the email and the website domain, so thank you to:
You help is very much appreciated.
If you want to become a patron, head to Patreon.com/seizeyouradventure all patrons at any level will be added to the exclusive SYA newsletter, and their name will go on the About Page of the website, and you might hear your name in a future podcast…
One last thank you for today goes to Frankie York, you are a beautiful person and a fab assistant. Frankie told me a few minutes ago that after her episode about surfing with epilepsy, she got in touch with International Surf Association and they are going to be sponsoring her to complete a course in adaptive surf coaching… which is so awesome. So congratulations Frankie, look forward to hearing more about that in the next season.
Thank you all for listening this season, and these past 2 years. Safe adventures everyone.