S1 E12: I Am a Runner (Full Transcript)




INTRO: You’re listening to Seize Your Adventure, the podcast that shares stories of adventure and outdoor living, with epilepsy.


[Acoustic guitar music - Where the Wild Things Grow by Kev Rowe]


AMANDA (over): In those circumstances, running on more isolated trails meant I was alone and no-one stopped to help. I never questioned that, or wanted anything else, because I knew that when I woke up I would be able to get myself home.


[Music amplifies]


SINGER:

Here I go, on my way to where the wild things grow

And I know there’ll be good times, bad times on the road

Where the wild things grow

Where a soul can be a soul


[Music fades]


FRAN: Hello Adventurers, Fran here and it has been a long time coming but I have a new story of adventure for you. I’m sorry that it’s been so long since the last story, but this type of episode is very labour intensive. For those of you that follow my 30 at 30 for epilepsy challenge you’ll know I’ve been a bit busy recently. I will go into much more detail in a future podcast for you, but about a week ago, I ran not one but two ultra marathons over a weekend and I can tell you 100KM is an insane distance. It was an incredible experience and an emotional one. But training for that, fundraising and recovering from this race has taken up a lot of time over the past couple of months, and I know the podcast has been on the backburner at times because of it.


So I am very excited to come back with what is in fact a brand new story for you. It hasn’t been posted anywhere on the Seize Your Adventure website, or anywhere else online and has been written entirely for this podcast. Which is quite exciting to be honest, it makes me feel like a proper podcaster now.


And it is a very fitting story, because it looks at the idea of how we define ourselves, and it comes from another runner with epilepsy. For most people, the teenage years are a crucial period in finding out who we are. We try out lots of new things, we meet new people, we’re growing into new bodies and we’re starting to figure out the adult we will become. So it’s horribly ironic that the teenage years are also a time that a lot of people start experiencing seizures for the first time.


Today’s story comes from Amanda Plomp. Nowadays, Amanda defines herself as a runner and specifically as a runner with epilepsy. But that wasn’t always the case. When Amanda started having seizures in her teens, it made her feel lost in her own body. Those seizures and the medication to stop them, impacted on the activities that she enjoyed. She felt defined by having the condition. But after many years of living with epilepsy, something unexpected helped Amanda reconnect with her body, and redefine her sense of self.


Now there are a couple of keywords I just want to give you to help you enjoy the story better: tonic clonic seizures we’re now familiar with, those are the ones where you lose consciousness and convulse. Myoclonic seizures or myoclonic jerks are isolated convulsions in one part of your body, so it might be a jerk in the arm or leg, for example. And there is the very complicated sounding Juvenile Myoclonic Epilepsy of Janz. That’s Amanda’s diagnosis and basically just means epilepsy with different types of seizures, including those myoclonic jerks, and it starts before you’re an adult.


Now that we have that knowledge, I’d like to let Amanda tell you more:


AMANDA: I didn’t consider myself athletic when I was young, but I was always active as a kid. I played softball, I went swimming, I went camping. I hiked, I climbed, I rode a bike. I snowboarded and skied, I tried a lot of different sports from hockey and soccer, to long jump. But there was nothing that made me wake up in the morning and leap out of bed to get going. I didn’t love sport. And then, there came a time I couldn’t do sport anymore.


[Acoustic guitar - intro to “Where the Wild Things Grow” by Kev Rowe]


AMANDA (over): I was thirteen years old, when I started exhibiting signs of seizures. They were occurring fairly early in the mornings, but, with no one else in my family having epilepsy, there was no reason to think it was anything along those lines. I was lethargic and tired, but surely that was because I was a teenager going through puberty? I was temperamental, but surely I had kind of always been that way?


[Music ends]


It was my teachers who noticed that change the most, as I went from an enthusiastic, lively student to appearing to daydream all the time, especially in the mornings. It turned out they assumed I was on drugs. But they said nothing to my parents or myself about it.


It was the day after my fourteenth birthday, I had my first known tonic clonic seizure. I was getting ready for school. I remember noticing a clenching sensation in my right hand and arm. For about ten seconds, I felt it spasm. I couldn’t understand what was happening and then - nothing.


I was hospitalized by that seizure, but no diagnosis came of it. No one saw exactly what had happened, I didn’t know the words or the medical condition to be able to verbalize what had happened. I couldn’t explain it.


A few months later, I collapsed in the shower. My dad who had to pull me out. It was, by far, the most embarrassing moment of my life even to date. Honestly, being a teenage girl is challenging enough, having to have your dad pull you out of the shower is the worst. At least, though, the seizure was witnessed. After that, the episodes increased and I began seeing doctors and specialists.


I was eventually diagnosed with something called ‘Juvenile Myoclonic Epilepsy of Janz’. I don’t remember feeling anything through the testing, through the appointments, but I do remember being so angry at the neurologist, who was sitting there and telling me that I would probably never graduate high school, never have professional employment, never be able to live independently. No driving. No travel. My condition would make relationships difficult, I would never have a family. I don’t know what my parents were thinking or feeling in that moment. That neurologist wasn’t just giving me a diagnosis. He was saying “no” to everything I had anticipated for the rest of my life. He was saying “you can’t do this”. And I was mad.


[Music - Where the Wild Things Grow continued]


AMANDA (over): I would love to say that I just went forward and showed everyone he was wrong right off the bat. That was not the case. I was angry, but I began very quickly to realize that there were more potential limitations than just the diagnosis of epilepsy. The first round of medications caused significant weight gain and increased appetite. My slender, prepubescent body was now suddenly several clothes sizes bigger. When I showered, I would come out with handfuls of my long hair, which was falling out in massive clumps. I was exhausted.


[Music ends]


My body, which was already transitioning from being a child to being, sort of, an adult, was now having to endure seizures and pharmaceutical side effects as well. School became torture. I couldn’t focus, whether reading, another hobby I loved, or having a conversation. My grades, something I always took a lot of pride in, dropped drastically because understanding didn’t come naturally or immediately to me anymore. My friends left me, saying I was faking the seizures for attention. None of the teachers wanted me in their class, because I was disabled and they didn’t know how to deal with that. My physical education class would go swimming, and I had to stay out of the pool and write a report about swimming, just to remind me what I was missing.


I became insecure. I tried to isolate myself. I was aggressive and angry. And I dropped out of all my sports.


[Abrupt acoustic guitar - E I - 5.mp3 by CunningGnome]


AMANDA (over): The neurologist was being proved right. Not because of just the diagnosis of epilepsy, but because of all the side effects that came with it.


[Music ends]


But when I mentioned earlier that I was temperamental as a kid, I wasn’t joking. If someone tried to tell me to do something, I refused, just on the principle that I hadn’t been asked. I argued with everyone about everything. I am still kind of this way, honestly. But certainly, fourteen-year-old me was not having any of the “no” that I was hearing. Because I was told that I probably would not graduate high school, I had to. It took extra effort and I went through five different schools in five years. But I graduated on time. And then I went on to obtain two separate Bachelor of Arts degrees.


[Calm electric guitar music - Bubblegum by Kev Rowe]


AMANDA (over): While I was in university, I was able to leave the epilepsy label behind me, and with it some of the isolation and insecurities. I still had seizures but I also studied overseas on two occasions. I backpacked internationally. I travelled, I saw the world.


But I didn’t wear a medic alert bracelet or tell anyone that I had epilepsy. I managed to hide it from everyone - even family, roommates and travel partners. I wasn’t as scared of the seizures as I was scared that people would judge me or leave me, like my middle school friends had.


[Music changes to guitar refrain]


That was a major reason why I didn’t get back to sports in university. Sure, I loved hiking and camping - that's kind of a standard Canadian summer pastime, so it never stopped - and I would very occasionally go to the gym or organize a road trip and hike for international students. But those commitments were specific to me, with no one relying on me. I was afraid that if I became part of a sporting team, I wouldn’t be able to guarantee that I would be able to attend practices or games.


[Music returns to strumming]


I did not talk about my epilepsy with even those closest to me. I certainly wouldn’t want to try to explain it to an entire team. So I carried on avoiding sport, out of fear.


[Music fades out]


After I graduated from university, I ended up with an employer in Calgary, not far from the foothills of the Canadian Rocky Mountains. My office was just down the block from the Bow River Parkway, which is, in my opinion, the most beautiful place in Calgary. The Parkway goes along the Bow River, a wide river fed by turquoise glacial waters. The paths inside the Parkway are predominantly pavement, but the trees and pine forests on either side make it feel like you are outside the city, not right in the core. If you go out after dusk or early in the morning, there are deer, and during the day there are always small animals and Canadian geese.


Working close to the park, I realised I wanted to be outside, I wanted to be active. I had lost weight a few years prior due to a medication that I was no longer on, but I didn’t feel strong. I still felt a little bit lost in my body. Since the time that the seizures had started, I hadn’t been able to feel comfortable with who I was physically.

I wanted to be active, I needed to be active, but I was dirt poor. So, despite the fact that Calgary has very cold weather and a lot of gyms, I started running outside because I thought it would be inexpensive.


[Sound of birds, and runner on a path]


AMANDA (over): At lunch hours I would change into cheap sneakers and go for a run along the river parkway. It started as barely being able to hold a pace for a minute. My lungs would be breathless. My legs would get tired. But over time, that one minute turned into five minutes. Then ten. Those first runs, I wasn’t able to run solidly for an entire kilometer but eventually I started being able to add distance during my lunch breaks. And one day, after months, I suddenly realized I didn’t want to go back to the office at the end of my lunch because I wasn’t done running.


I wasn’t done running. I wanted to go further. I had to go further. But being the mature, responsible adult that I am, I turned around and went back to work, buzzing.


[Running sound fades]


After that point though, I started running in the evenings as well. I started adding on more kilometres and more hours. I spent my weekends in the provincial parks seeing how far I could run and at what point I would have to stop. Those protected areas of nature gave me a variety of running experiences: pavement, packed trail, backwood. I loved the backwoods running, and often climbing as well, but because I ran alone I didn’t feel as safe, knowing a seizure could happen and the larger wildlife that are in the parks, moose, bears and mountain lions share those trails. I got used to pavement and packed trail, and learned that packed trail is my favourite.


I bought a running watch, a running belt, proper running shoes. I started reading books and magazines on running. I didn’t change my terrible eating and drinking habits, but I did notice the increase in my lung capacity, in my muscles, in my ability to endure and keep going. I loved running.


But the seizures. I was still having seizures. And I had seizures while I was running. Sometimes they were myoclonic seizures, and a random jerk or twitch meant I would trip, but if I didn’t land too hard or hit anything, I could get up and keep going. That was just the way that it was. I did have occasional tonic-clonic seizures while running. Because I have no identified triggers and experience no auras, I would just wake up on the ground. I would look at my running watch, realize that there was no way that my running time could be that much, and I would know that I had had a seizure.


[Acoustic guitar music - Where the Wild Things Grow by Kev Rowe]


AMANDA (over): In those circumstances, running on more isolated trails meant I was alone and no-one stopped to help. I never questioned that, or wanted anything else, because I knew that when I woke up I would be able to get myself home.


[Music amplifies]


SINGER:

Here I go, on my way to where the wild things grow.

And I know there’ll be good times, bad times on the road

Where the wild things grow

Where a soul can be a soul


[Music slowly fades out in background]


In 2017, I did my first international race combination. It was a 10K at 5:30am on a Saturday morning and a half-marathon at 5:30am on the Sunday morning. It was in Disneyland, Anaheim, California. When I was chatting with people at the race, I learned that a lot of people were running for different causes. Sometimes people had the conditions themselves, sometimes they were supporting people they knew. I realized that more so than when I was a teenager, there were people willing to fight the stigmas and support others with different conditions. I was so impressed by the strength and passion I saw that when I came back to Canada, I immediately started a blog and began reaching out to organizations in the epilepsy community. I wanted to fight the stigma associated with invisible disabilities, and I wanted to support others.


It has been seven years since I started running, and from that slow 1km, I can now run ultra distances beyond a marathon. I have raced across mountains and through Disneyland. I have flown from country to country, chasing 10Ks and half-marathons and marathons. I didn’t realise it when I started but by long-distance running, I was teaching my body how to be strong and endure.


[Music slowly fades in underneath - guitar refrain from Where the Wild Things Grow - and continues throughout]


Not just the specific strength that comes from being able to propel myself forward for 42.2 kilometres, but actually strong, body and soul. The injuries I’ve experienced -- stress fractures, nerve damage, cuts, bruises, strains and sprains -- for me they are just part of running. Running is mentally exhausting. You’re in your brain for a few hours, pushing your body to keep moving, when the only break in a race is the next water station where you absently accept a cup of water, suck an electrolyte gel and keep stumbling forward. The station is out of sight so quickly it might not have even been there. There are other runners around you, but you don’t know them, they don’t know you or what conditions you may run with.


My epilepsy has helped me with my running. Seizures have resulted in more injuries than I could ever obtain running and I know my capacity for pain, what it’s like to feel overwhelmed, to lose focus. It has meant too, that when I run and I feel like I can’t keep going, that there have been so many other times outside of my control when I have felt that way. And yet I managed. I persevered.


Being a runner has helped me with my seizures. I recover fast, I am more aware of my muscles--


[Underneath AMANDA, the guitar is joined by singer and we can hear these words under her next part:

‘Cause I’m home free

That’s how we’re meant to be.

Everything I know is coming

right back to me]

AMANDA (con’t over): -- of where the pain is located, of what I need to do to get back in my sneakers after a seizure. That road to recovery is something that I think most runners are aware of to keep themselves healthy and I’ve simply applied it to other healing.


[Underneath AMANDA, we can hear the singer repeat:

So wild things, grow wild things

Grow wild things grow]


And becoming an athlete has helped me with my epilepsy. If I wake up after a seizure, I might be upset, but I am not devastated. I do a quick assessment, scan of myself, review of any injuries, and then I get back up again. It’s that knowledge that I want to get back up that keeps me there.


[Singer finishes]


In my mind, knowing that I have previously been able to stand up and keep going, empowers me to get up again.


As a runner, I want to go further and faster. As an epileptic, I know I can. Even in the face of adversity.


[Music ends]


FRAN (in studio): ‘I Am a Runner’ was written and read by Amanda Plomp, a runner, of course, a blogger and epilepsy advocate based in Victoria in Canada. And she blogs about being a runner and athlete with epilepsy under the website Tremors of my World - the link to that is in the show notes for you.


There are many people who question the decision to run alone in the backwoods if you are likely to have a seizure. And the dangers and responsibility of running with epilepsy was something Amanda and I talked about in detail when we had a chat a few weeks ago:


AMANDA (to FRAN in interview): My seizures, depending on the length of time or when someone finds me, a bracelet that says ‘epilepsy’ isn’t really gonna be very helpful if I’m unconscious on the pathway and somebody comes across my body. If they don’t see the seizure it’s-- I would hope they would call 911 if they came across me, just to call for an ambulance. But I’d be more at risk for a concussion if I was unconscious on the pathway, rather than having had a seizure as a result. The worst thing I think would be actually is if I -- If I fall. If I just have the little myoclonic seizures and I trip, I usually scrape up my knees from my kneecaps just to-- like the whole length of the leg. And it’s painful but it's not the end of the world. And if I’m bleeding, I can still run if I’m in training. And I can usually just get up and keep going. The problem is that over the next few weeks as it starts to, like, heal and then crack again because I’m running. And then it starts bleeding again and then it heals and then crack, it’s just-- it’s such a process. It’s so-- you know, inconvenient (laughs).


FRAN (to AMANDA): That’s making me remember some times when I was a teenager and I just clumsy I think (laughs). I definitely skidded-- skidded my knees on tarmac and that kind of thing a fair few times and, yeah, I remember that feeling.


AMANDA: Oh yeah, but-- I mean, I’m as much at risk of tripping and falling, just over uneven sidewalks or roots or rocks or anything like that as anybody else, so no matter what that’s a risk that anyone who goes outside I think has to take.


FRAN: Yeah. Absolutely.


FRAN (in studio): You’ll get to hear more of our conversation in the next episode, which will be out in the first week of August.


In the meantime, be sure to follow @SYAdventurers on Instagram, Facebook and Twitter. Be sure to keep an eye on the SYAdventurers Instagram and my personal one. Next week, because I will be having some fantastic adventures in Colorado! The folks at Outdoor Mindset have given me a grant to head over there and attend their Summer Summit. I will be doing some hiking at altitude, I’ll be doing some mountain biking with Jake Quigley and also going to their adventure film evening. If you want to know more about Outdoor Mindset, make sure you listen to Jake Quigley’s episodes and if you are able to get to Dillon in Colorado you can join us on the 3rd August for the Summer Summit yourself.


If you enjoyed today’s episode - please subscribe, leave a review and share the podcast. And if you do want to support in a more financial way, if you head to the Seize Your Adventure website there is a shop on there. You can buy some merchandise, there are things like enamel mugs, journals. There is also a place to just make a donation so if you are appreciating what I’m doing,please do consider donating.


This to end today, I wanted to remind you that all stories presented on the Seize Your Adventure podcast reflect the personal experiences of contributors. Neither myself or contributors can advise or take responsibility for any individual decisions made about adventure sports or medical conditions.


The music in this episode was by Kev Rowe on Soundcloud and CunningGnome on Freesound.org, thank you very much both of you.


That is all for today and until next time, Safe Adventures everyone.


END


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 All rights reserved. Content may not be reproduced or copied without permission. Please remember all information presented here reflects the personal experience of contributors and writers may not be experts in the subject matter. We take no responsibility for individual decisions made with regards to adventure sports or medical conditions.

© 2020 by Francesca Turauskis.