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E9 TRANSCRIPT: Purple Day special: Adventurers Talk Epilepsy from Seize Your Adventure

Updated: Feb 21

[MUSIC starts - Bassbeat by Alex Norton: "Funky and upbeat, jangling guitars, a fat bassline and a full horn section create the perfect soundtrack to a late summer block party."]

FRAN: Welcome to On The Outside the podcast sharing diverse views on outdoors news. My name is Francesca Turauskis and this is a special episode looking at a very personal news item.

[Music ends]

Every year on the 26th of March is Purple Day, the International Day of Epilepsy Awareness. It's the one day a year dedicated to raising money and awareness to support everyone who is living with the effects of epilepsy.

Right now, people around the globe are cycling, walking, swimming, running and more to raise money to support people living with epilepsy. And if you are one of them, thank you so much.

But one of my biggest passions is advocating for the fact that - people with epilepsy can do these things too. I was diagnosed with epilepsy in 2015, and since then I have walked across Spain by myself, run an ultra marathon, done ice climbing, bouldering, kayaking and so much more. Often, the activity providers and friends I do these activities with are great. But I have also faced a lot of stigma and prejudice when I say I have the condition. I have been asked to bring a ‘buddy’ to organised events. I’ve had people run away from me on trails. I have difficulties getting to the outdoors because I don’t drive. And like most people with hidden conditions I’ve had microagressions: you don’t look like I have epilepsy, you’re using it as an excuse, is it safe for you to be here.

Today I’m sharing an episode from another podcast. You may have noticed at the start that On The Outside is now part of the Tremula Network, and this episode comes from another podcast in the network called Seize Your Adventure. Some listeners will know that is actually my OG podcast.

This episode flips the microphone, and talks to adventure providers about their understanding of epilepsy. If you’re unfamiliar with epilepsy, I hope you find value in these conversations and learn about the condition. And if you have epilepsy, this should reassure you of the warm welcome you will get from many providers.


[On The Outside Ident]

JOE: --it’s never going to be easy an adventure, it’s always going to be difficult at some point-

JADE: --you can find adventure in all parts of your life, it’s just kinda how it makes you feel--

JAKE: --when you’re experiencing joy, you’re experiencing excitement, you’re experiencing fear, you’re experiencing intimidation--

JOE: -- but that’s one sacrifice that it’s worth it to make because it always leads to really positive things happening along the way--

JADE: --challenging, completely off-the-wall things that everybody goes “oh I don’t think you should do that…”--

JAKE: --that brings you somewhere that just feeds your soul...

FRAN: Hello Adventurers and I'm back again with another episode for you. So the observant among you will have noticed that this episode is not coming out on the 6th May like I promised it would. May has been a particularly busy month for me, so I can only apologise for not getting the episode out sooner. But I did want to make sure that it was a good one for you.

So just to catch up, last month we had National Epilepsy Awareness Week and during that week. I was lucky enough to turn 30 as well, so that was the start of my 30 at 30 Challenge. 30 challenges that I'm going to do over the next year to try and raise awareness for epilepsy within the adventure community, and also start a conversation about how people of epilepsy can start doing some of these challenges a little bit more. I was also, actually, on another podcast during that week. So if you head over to Tough Girl Challenges run by Sarah Williams, you'll hear an interview that I had there and it was a great conversation, Sarah asked some lovely questions and managed to get me talking about things I don't think I've spoken about anywhere else, in fact. So do go and have a listen to that one.

You just heard at the start of this episode some of the ideas of adventure that have come from our epilepsy adventurers over the past couple of months. The people that you've listened to have had some amazing journeys and they have told us what they feel adventure means to them, and I decided it was time to ask some people within the adventure community what they know about epilepsy. I've mentioned before that I am in fact, an Ambassador for a group called SayYesMore. That's a social enterprise, it creates events and spaces and situations that just bring people together, often getting outside and it nudges people to realize what they're really capable of. And the YesTribe is a community of people built up around this. I reached out to people on the YesTribe Facebook page, and I asked if anyone was willing to come and talk to me about epilepsy and I managed to convince three tribe members to put their thoughts out to you. We got chatting. It was very difficult to cut down some of what was said, but I am going to give you a taste of some of the conversations.

So, I’ll just introduce you quickly to the three people I spoke to. So first off is a fellow SayYesMore Ambassador Jago Hartland:

JAGO: My overall job is working in outdoor pursuits, whether it's working for mountaineering trekking companies, cycle tour teams and at the local lakes where we teach water pursuits as well.

FRAN: The next person I spoke to was David Willis.

DAVID: I teach bushcraft and generally looking after ourselves, building shelters. So it's all about having fun in the woods. It's kind of bushcraft, wilderness living skills, woodcraft.

FRAN: And lastly, this is Nikki Bass.

NICKI: I run a company called Resilience at Work, providing workshops, adventure workshops for individuals and for organisations.

FRAN: I started off with the very broad question: and I just asked them what do you know about epilepsy? So let’s begin with Nicki’s answer.

NICKI: Very little. I'm afraid. I’ve not really had very much contact with it and not-- I don't really I don't really know anyone who has it and I'm-- I don't necessarily know if I know anyone who has epilepsy, which I guess probably is as revealing as anything else. I just started volunteering for the Wave Project, that's a possibility that some of the young people that they have come along may well have epilepsy, and I guess that also served my interest just as it was mentioned at one of the-- sort of the volunteer training, at the briefing session that we had-- just that they would flag it up if they did have any children that came along who had epilepsy, just so that we were aware. Because they don't normally give you a background into people's-- you know, to why the kids there. And it just suddenly struck me, I thought, “Actually, that's really interesting because I'm not sure I would know, if anything happened, what to do in that situation? What would be the best way to react?”

FRAN: David actually had a really interesting answer because he grew up in a town called Chalfont St Peter and Chalfont St. Peter is actually where the Epilepsy Society is based. So the Epilepsy Society is now a charity, it's a residential home, and it's also a specialist hospital. Here's how David remembers it when he was younger:

DAVID: It was a village, principally for people with epilepsy, so you used to see them around the village from time to time, and sometimes when people would fall over and they were obvious because more often than not they were wearing a helmet or hats or something, so they didn't-- This is-- I was a kid, I’m trying to think. That's like-- Goodness me, that's the best part of 50 years ago. I would hope things have changed a little, but something-- who knows.

I'm reasonably aware of what may or may not prevail, but also it's-- Yeah, I guess my only experience is knowing that people may, for whatever reason, collapse. But then I'm also expecting that nowadays, more people are, perhaps like yourself, far more aware of what's going on. So I've never been asked by anybody who suffers with-- no,that's not true. I do but she doesn't exhibit any signs of it and doesn't seem to have any issues with it. Maybe I should ask her, actually, for next time [Fran laughs].

FRAN: Now. Speaking to Jago was quite interesting because he talked about what he knew about seizures from his First Aid training and he mentioned the seizures and anaphylaxis are actually taught at the same time. And this gave him a little bit of confusion because seizure first aid and anaphylaxis first aid are actually quite similar. So we talked a little bit about the difference.

JAGO: My thinking back to anaphylaxis and epilepsy is probably how your Fist Aid teachers probably teach them in groups. So you always tend to teach-- like, obviously with seizure, you obviously try to do the most comfortable thing. So you're always gonna be looking after people in that seizure. You're not gonna be holding them down. You're not gonna be putting anything in their mouths, which are things in the past which obviously went badly wrong as well. But that's probably one of the mishaps as well, actually, being taught that obviously they are in that group, so you don't actually realise what the difference between some of them are.

FRAN: So Jago picked up on a really important point there, which is the difference between seizure training and epilepsy training. So, most people that work in the outdoors will have First Aid training and will know what to do with a seizure, but they might not necessarily understand the different types of seizures that you get when you have epilepsy. It's also important to note that when you have seizures, they can be caused by other things as well as epilepsy. One in 20 people will have a seizure at some point in their life, whereas it's one in 100 people that have epilepsy. And that one in 100 people is still quite a lot. It means that most people will know someone with epilepsy, as we can hear from Nicki.

NICKI: Yes. It was actually at university and-- like I say it wasn't a direct experience, but somebody who I know who used to be part of our university ski and snowboard club and on the committee for that, and the chair at the time, when it started, whilst she was on the committee, started developing some symptoms that were a bit strange and she ended-- I think she ended up having a fit and was, during that year, diagnosed with epilepsy. And I just remember-- I wasn't very close to her, so I didn't really know all the details, but I do remember it, sort of, the impact it had on her. She wasn't allowed to drive anymore. And to find out-- I mean, we must have been 19-20 at that stage, so it did have quite an impact on her life. And I think especially being someone who was outdoors and loved skiing and adventure and that side of things. I guess that's been my closest experience of it in terms of, you know, seeing the impact it can have on someone, even just getting that diagnosis.

FRAN: So I talked a little bit with all three of them about the fact that there are many different types of seizure that can happen when someone has epilepsy. So you have the very noticeable tonic-clonic seizures where somebody falls to the floor, they lose consciousness and they convulse. But there are other types of seizure, which can cause things such as muscle jerks, muscle spasms, loss of consciousness but still standing up or sitting, and lots of different things that are affecting your brain, but not necessarily as obvious as those tonic-clonic seizures. This is really important when it comes to doing things like risk assessments. And risk assessments are the perfect time to speak to an activity provider and give them more information about your epilepsy.

DAVID: Some people are far more open and helpful with explaining needs that people have, whether it's adults or children or teenagers, and others don't tend to tell you. Most people that do this sort of thing professionally, running things, will have a consent form. And the key thing is there’s that box that says, “Is there anything I need to know in order to make things safe and enjoyable for you?”

JAGO: In terms of the risk assessments that you take, with someone saying that they have epilepsy, at a young age obviously it would be down to the parent's choice and being in touch with parents about it. But we would always keep a much closer eye on someone like that. Whereas obviously, with an adult, it does become a little bit more difficult in some ways, the only ways being that, you know, we're not always having to be there to keep an eye on them, because I could be the instructor or we can watch over them and the whole safety factor is there. Although it's their choice. So it tends to be done on how well they know themselves and how well they can make that judgment call. But yes, always better to be safer than sorry, so the risk assessment would always take into consideration how they feel about their health, any medication, or whether they know how well they are at this activity or any triggers. So we could ask them if they have triggers of stress and obviously pretty much always in the outdoors, if they're not used to it, there's quite a lot of stress factors involved. So we just try to measure those, measure their choices, and measure those risks that we’re running through. But yes, keep as strong and safe as possible.

FRAN: So I did actually point out to Jago the assumption he made that someone needed to be looked after because they're prone to seizures. We talked a little bit about the different types of seizures and how much support and adaptation some people might need, and how little some other people might need. Once we talked about that, he understood much more the idea of individual risk assessment, depending on the type of epilepsy and how it presents.

Nikki already had a really good idea of this, in fact. She talked a lot about working with the individual and also with the providers of the sport that she works with.

NICKI: So for me, I guess it would be very much a conversation with the provider that I'm partnering with. They're the ones who would have the risk of assessment for the physical aspects of it. And I think it would really be a discussion around, you know, what their procedures are in place. They have the lifeguards and the surfers-- so for surfing, they provide the surfing instructors who would be trained on it. Yeah, I think I'm imagining that every situation is probably different. That actually like, you said, people can have a condition that actually, for some of them, is more present than for others and I suppose it would just have to be-- And because my groups are quite small, I think it's a very open conversation with the individual as well, about where they feel that their limits are and what their situation is. And I just try to take all of that into account. But I'm very conscious of not automatically, I guess, saying that you have to be in a-- you know, there is a certain level that you need to be, to meet-- to be able to take part in the activities because I'm really conscious about this and making what I do as open and available to everybody who wants to take part.

FRAN: So having talked about how the risk assessments themselves would work, I did speak with all of them as to how they would look at adapting activities. And, I think that David summed up really nicely just small adaptations that we can do to make sure that those activities he runs are a little bit safer if somebody is prone to seizures.

DAVID: Fire safety, when you're around in the woods having fires, always having buckets of water and things around anyway. Yes, if you've got someone who potentially could have a seizure of some description-- and it could be, of course, if it happens there, it's going to be when they're near the fire or something-- that at least being able to actually quench the fire. If you think “actually, that's a risk” that you want to pick up a bucket in order to put the fire out. Which is not the same as moving it away. [small laugh from Fran ] There must be all sorts of other ways and means around it, I should think. Maybe it's simply the fact that, actually, everybody gives the fire a slightly wider berth than normal. The fire is a little bit more out of reach. Or, if we're doing anything next to the fire, people are sitting down.

FRAN: From speaking to Jago, David and Nikki, I think that there are gaps in knowledge across the board, and this mostly comes down to the different types of epilepsy, the different types of seizure and how it affects everyone in a different way. One thing that was really good to hear from all of them was that willingness to have the conversation, to speak to the individual about what they needed, and to be willing to adapt things and willing to make amendments to make sure that someone can actually get involved in their activity.

DAVID: The key thing is being able to formulate the right questions to ask so that they're not too intrusive, but at the same time it’s showing that you're interested and that you just want to make sure things are safe. And they're not-- these are questions that you want to ask people, they're not putting barriers up so that you can't do something. In a way, they're almost making sure that you can do all the exciting stuff that we want you to do.

FRAN: And that's the really important thing is making sure that you know your epilepsy and you know how it presents, and the person providing the activity knows their activity. And by speaking together, that's how you can adapt, and that's how you can keep everyone safe, including yourself.

So, I did rush through some of the seizure and epilepsy information there. So if you would like to know more, I do have a little bit of information on the Seize Your Adventure website. That’s, scroll to the bottom and click on the Learn About Epilepsy tab. You can also go to some websites which are really useful. So you've got Epilepsy Society, you've got Epilepsy Action, and also Young Epilepsy is a really good one for teaching children about their own epilepsy and also, if you are working with children with epilepsy, that is a great place to go and have a look at.

I just like to say a massive thank you to Jago, David and Nikki for agreeing to talk about something which they didn't know very much about. There is quite a lot of bravery in getting involved in a conversation, on record, about something that you don't know the answer to and I think by doing that, it's really helpful to others out there who might have the same questions or might have the same gaps in their knowledge.

So, that's it for today's episode a little bit different to usual, but I think it's something that's very useful going forward. If you did enjoy it, please do share. And obviously, go ahead and listen to all the other episodes if you haven't already. We have some great stories, some creative non-fiction stories, and some fantastic interviews with some adventurers with epilepsy.

Thank you very much for joining me again today. It is great to be back, and I did, of course, ask Jago, Nikki and David what ‘adventure’ means to them. So I'll leave you with their thoughts and until next time, safe adventures, everyone.

[Quiet bird song]

JAGO: Adventure has always given me a sense of purpose--

NICKI: --adventure to me is absolutely about a mindset, not about an event--

DAVID: --it's a leafy shelter. It's something you've built to keep warm and cozy and keep the elements at bay--

NICKI: --it's about how you approach any challenge or opportunity or any change in life.--

DAVID: It's a fire where you've cooked your food, you've made a brew. The kettle simmers. There's the warm on your body from the glow of the embers

JAGO: --you’re taking on challenges and the great outdoors whilst engaging with other people--

DAVID: --and sometimes it's just simply good to share it with others, too.


FRAN: (in OTO studio) Thank you all for listening today. We will be back in April for some news round-ups and main episodes. In the meantime, make sure you are signed up to the On The Outside newsletter. The link for that is in the shownotes. This episode was produced by me. Seize Your Adventure music is by Kev Rowe and artwork is Malva Izquierdo. On The Outside music is Bassbeats by Alex Norton

[Bassbeat music starts]

artwork is by Sophie Nolan and until next time, take care.


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