JOE: It’s never going to be easy, an adventure. It’s always going to be difficult at some point. But that’s one sacrifice that it’s worth it to make because it always leads to really positive things happening along the way. And afterwards you’ve always got the positive memories that come with it as well and, y’know, a great feeling of pride in what you’ve managed to achieve through an adventure, I think…
FRAN: Hello everyone, I’m Fran Turauskis and you’re listening to Seize Your Adventure. This podcast lets you hear from people, like me, who have epilepsy and enjoy adventure sports, challenges, and just getting outside. I feel very lucky to be the one who brings these stories to you, because I get to connect with some amazing people and pull from their experiences the things that I think will be interesting and helpful to you. But the interesting thing is that when I approach people to contribute to the podcast or website, one of the main responses I get is “I don’t think I’m very interesting…”
And I understand this, I do it myself. I was actually told by someone after a talk I did last year that I need to lose the Impostor Syndrome. And I think it is quite natural to belittle what we do, particularly when you are doing it through some sort of adversity, because in a way it makes it easier for us to carry on doing it.
But it is important to acknowledge when we do hard stuff and that we do impressive things. Not just because a sense of pride won’t do us any harm, but because it makes our stories more realistic to that person who is scared that it’s too hard for them. In a strange way, if we acknowledge that something is hard it makes it more attainable because it is hard for everyone.
Last episode we heard from Joe Stevenson about his personal peak, the adventure that he is most proud of. In today’s conversation, you hear a little bit more about his everyday life, and what he wishes he did more of. He tells us about some of the low points in his epilepsy journey, including depression, the side effects of the medication and his difficulty finding work. And we find out where he’s aiming his sights next, now he knows what he is capable of. I hope you enjoy the conversation.
FRAN (to Joe): Just to begin with, people would have noticed from the story you read that you have a bit of an accent. Can you tell us where you’re from?
JOE: I am from the Manchester area. South Greater Manchester, more specifically a town called Sale. That’s in the UK, too, if there’s any American people listening.
FRAN: It is probably a good thing to just clarify there. And you live quite near to some nice landscape? Don’t you live near the Peak District area?
JOE: I do, yeah. I’ve been around that area quite a few times. It’s got some good views around there, it’s good to go walking. Yeah, I like the Peak District. It’s a handy place to be near.
FRAN: Can you just explain for people that don’t know about that, what kind of landscape it is?
JOE: It’s great. It’s a hilly area, there’s so many forest places to go through, things to look at around there. I recommend it for anybody who’s just interested in going on walks, seeing some nice sights. There’s some nice towns nearby, with art galleries, that sort of thing. I thought about maybe moving there in the future, when I’ve got a bit of money under my belt.
FRAN: How do you get out there when you go, do you drive yourself, or do you get people to drive you?
JOE: It’s always the train that I’ve gotten to go to the Peak District, from what I remember. I might have been there when I was quite a bit younger, but I didn’t really have so much interest in what was on offer when I did go on a drive with my parents. But it’s always the train that I get with people if I go on a proper walk. Although Northern Rail doesn’t work too well at the moment, that’s a bit of a pain to be honest.
FRAN: Oh, I think it’s the same across the country at the moment, isn’t it? The train service is definitely one of those things that’s a bit annoying when you can’t drive. I got stuck in Waterloo when I was coming back from Scotland. All the way down from Scotland with no trouble and then as soon as I hit Waterloo and I was stuck there for an hour.
So you told us that the story about your hike up Ben Nevis for Epilepsy Action. Was Ben Nevis the first mountain that you climbed?
JOE: Yeah I would say it was. I wouldn’t really call the places around the Peak District ‘mountains’. They’re just really big hills. I don’t think there’s too many mountains in the UK as such. It was the first mountain in my eyes, and it was certainly the biggest challenge I could take on.
FRAN: As you say it is the highest mountain in the UK, so it’s a very difficult one for you to begin with. Like you say there’s not many mountains in the UK in general. When we’re classing a mountain, I think the official rule is it’s over 1000 feet. So there’s a few that are over 1000 feet. But like you say, the smaller ones are just really big hills. When you were climbing, how much money did you make for Epilepsy Action?
JOE: £700, just over or just under, it’s hard to remember now, that’s about what it came to, which I was quite happy with that when it all added up. It was all done online, just asking people to donate via one of the websites that sort of thing out. Sorry, bad memory can’t remember the name of the site–
FRAN: No it’s quite alright. You said at the start of your story that you do have a few memory issues, and that’s related to your epilepsy and the medication, isn’t it?
JOE: Yeah, absolutely.
FRAN: Have you noticed any changes when you change medication? Or if you’ve had a seizure recently do you have memory issues then?
JOE: It seems that there’s not much I can really do about my memory problems when changing my medication around. I’ve tried changing things around quite a few times now, but it seems pretty ineffective. Nothing really seems to help me when it comes to medication anymore, which is a bit of a pain. But the next thing we’re thinking about is surgery for me, actually. VNS surgery, Vagus Nerve Stimulation.
FRAN: I saw that, actually, yes, you wrote about that in your blog, didn’t you?
JOE: Yeah, that’s right.
FRAN: And can you explain that just a little bit more for people who aren’t familiar with it?
JOE: Well, it’s somewhat very similar to getting a pacemaker, really. It’s more of a magnetic item that they add to the top left chest area, and they run a line through your neck area in towards your brain. It’s all about stimulating the area from your brain to your body basically, the nerve that connects your brain to your body. As time continues it’s supposed to help you. It does take a long time to get moving. It can take between six months and two years to kind of get itself working. It doesn’t take you off any medication, you’ve got to still take it. Can’t totally help it out without the medication, but eventually it can improve things alongside it. So it’s worth giving a shot, I think.
FRAN: Well, I look forward to seeing the updates on that one and fingers crossed for you going forward there.
JOE: Yeah, cheers. I’ve got my appointment now, it’s in January. It finally came through the NHS, which I was happy to see.
FRAN: You’re a member of a group called MAD Walkers, aren’t you? So can you explain what MAD walkers is.
JOE: MAD Walkers, M-A-D, Manchester District walkers. It’s pretty much the biggest Ramblers group in Manchester area. People from all over Greater Manchester join it, and there’s about 250 plus members. They just like going on walks in places all around there. Often they are around the Peak District like I mentioned. But there’s other places not too far from Greater Manchester that they tend to stick to. Although, from time to time they go on longer journeys as well. Two times a year or something, there’s a group of people that might go up North to Scotland, or even go abroad. I think they went to Copenhagen not too long ago. It’s all a big group, really. People who are interested in looking at the views. Always getting a pint afterwards, having a good drink afterwards. We always get more than a pint to be honest. [both laugh] You put the calories back on that you just burnt, it seems. And sometimes we go into more than one pub on the way.
FRAN: That sounds like a good end to a walk to me. And how did you get in contact with them?
JOE: I think I just looked online to see if there was anything available. I had heard of the Ramblers group. It’s hard to remember exactly how I heard of Ramblers. But walking around, from time to time I thought, “you know, I wouldn’t mind meeting new people as well as, making some new friends.” So I started to go along to these. It’s been good, I’ve enjoyed the times, it’s healthy enough. There’s plenty of people who like to go on the walks, too.
FRAN: And they know about your epilepsy, don’t they?
JOE: They do, yeah. It’s always important, there’s always the leaders of the group that take charge, count people up, you know, give them instructions, tell them how long it’s likely to take, how difficult it is beforehand. Things like that. Usually we have a train station where we start off from. I was part of the committee for a while, just helping out writing a few articles about each weekend that was upcoming and publishing them on the Facebook page. I got to know the committee members better and they know me pretty well. They know that I have epilepsy.
FRAN: Can you remember how you had that conversation initially? Did you approach one of the group leaders?
JOE: Yeah, it was safest to do that. I approached them, let them know. It wasn’t any trouble, really. I think they probably knew people who had epilepsy or similar problems or health issues that might make things a bit more difficult. I think it was more difficult on my first day, from what I remember. I always take plenty of chocolate and things like that with me just to keep my energy levels high, because I deal with fatigue. That is something I have always got to just keep in my mind.
FRAN: Yeah, absolutely. So again, you mentioned the fatigue in your story. Would you mind just telling us a little bit more how that affects your daily life and what it feels like?
JOE: Fatigue, in my daily life at the moment doesn’t bother me too much. I’m unemployed at the moment though. I’ve had lots of interviews recently and things. But if I have a job then I’ve got to make sure that I don’t start too early in the day. I find that if I get up at six o’clock in the morning then I’m absolutely knackered by the time I get to work. I tried doing that for a job that started at eight o’clock in the morning once, and it had to be changed to 9 a.m. because I just had a lot of seizures in the morning when I first began that job at 8 a.m. in the morning. I’m also somebody who doesn’t stay out as late at night. My friends do when we go out to like clubs and bars and things. I just don’t have as much energy as they do. I often call it a day a bit sooner than they do. It’s not a massive deal, you know? It’s something that I’ve just grown used to, I’m quite happy that I’m just a bit more tired. It kind of maybe slows me down a bit, you know. I don’t walk as quickly as some people sometimes. But aside from that, it’s not that big of a deal.
FRAN: You did fairly well with the Ben Nevis hike, didn’t you? You managed to get up and down in– how many hours?
JOE: It was about six hours I think, yeah. I was quite happy with that. I read beforehand about how long typically takes people. I think it was usually around six to seven hours, so it didn’t take me any longer, it seemed, than other people. I did do a bit of preparing for it beforehand, just to make sure that I was fit enough.
FRAN: So how often do you go hiking in your regular life?
JOE: I have to admit I haven’t been hiking for a couple of months because I’ve been a bit focused on other things. It’s good to go about once a month, I think. That’s what I’d like to be doing. I’ve gone through long spells this year without going, but that was kind of my preference over the past couple of years before this one. Once a month seems like a good schedule to keep up with, one that I’d advise other people to keep up as well if they have an interest in walking.
FRAN: Yeah, especially if you’re doing longer hikes. How long are the hikes that you try to do, especially if you’re going with the group hike?
JOE: They could be between about eight miles and fifteen miles. Fifteen miles is maybe my limit. There’s the option of doing things like twenty-five mile walks with MAD walkers, which is quite a challenge, I think.
FRAN: Fifteen miles is a fair distance. You’re looking at over– that’s about twenty-five kilometres for those that work in kilometres. So twenty-five kilometres, fifteen miles is still an impressive distance. Especially if you do struggle with fatigue sometimes. And like you say, having those chocolates to keep you going, it’s obviously doing the right thing for you.
JOE: Yeah, it’s the smart thing to do at that point.
FRAN: Do you mind me asking, have you ever had a seizure when you were walking?
JOE: I haven’t. No, it’s never happened. I am quite happy about that obviously. Yeah, I’ve always been totally seizure free when I’ve been walking.
FRAN: So how does walking make you feel?
JOE: It can make me feel relaxed at times. It can make me feel– it can be difficult at times, no doubt about it. It’s always a challenge. But the good thing about a challenge is, I think, as you go through the day, it’s always gonna be difficult at some point. But it’s always gonna work to your advantage as well. There’s always gonna be real highlights, really good things to look forward to during a challenge. I always feel like I have accomplished something after I come to the end of it as well, you know? I’m quite proud of taking on fifteen mile walks, if I get one under my belt, it’s quite a long way to go, like you said. I do like to put a bit of effort. I know there’s a lot of my friends that wouldn’t bother doing that, so I can feel a bit stronger than they do!
FRAN: That’s it. I think you wrote the article for us about the 101 of Charity Hiking, and you said it very nicely at the end that if you’ve done a hike and you’ve earned any money for a charity, you’ve got to congratulate yourself. That is something that, no matter your situation, no matter your physical ability, if you’re trying it and doing it, then that’s something to be very proud of.
JOE: I still think that’s true, no doubt about it.
FRAN: Do you do any other sports?
JOE: You know, I can’t say I do at the moment. I wish I did other sports, I wish I had the time to. I’d play football when I was a kid, and I enjoyed it and would still enjoy doing it. But it doesn’t really fit in with my schedule at the moment. If anything, I just go to the gym when I’ve got the chance to. But well, I’m currently not signed up to the gym because I’ve just not got enough money under my belt to do it really.
FRAN: Tell me about it. They’re quite expensive signing up to a gym. That’s one of the reasons I like walking.
JOE: It’s pretty handy, walking. It’s certainly a lot cheaper. I find it cheaper. It’s always good to get a train as well when you’re walking because, as I said, the walks we go on are never too far out of Greater Manchester. And if it’s in Greater Manchester, I get free public transport even if it’s on the train. I can usually get away with not paying anything on the train and just going on this walk for pretty much nothing. Aside from the money you pay for the Ramblers every month, which is £2.95 I think.
FRAN: £2.95 per month. You can’t complain at that really.
JOE: No, not at all. It’s a good deal.
FRAN: And you get the free transport because you still have seizures, so you’re not allowed to drive at the moment. That’s the reason you get the free transport.
JOE: Yeah, that’s right. It’s probably the biggest benefit of having epilepsy. It’s saved me a lot of money over the years. I mean, I use the public transport– I use the tram system in Greater Manchester, the Metrolink, all the time. It must have saved me about £10,000 or something over the years that I’ve been using it. It’s been pretty handy.
FRAN: Yeah, we are lucky that we get that in the UK. It definitely makes things a little bit easier when you’re going through a difficulty.
We haven’t really actually talked about your epilepsy itself. Would you mind just telling us a little bit about when it started and how you were diagnosed?
JOE: I was diagnosed with it when I was five years old, but I was born with it basically. To begin with, just when I started school, people thought I was being a bit daydreamy at times, but I was actually having absence seizures. It took them a while to clock on to that. After they did clock on to it, I was fine with my epilepsy. It was controlled by Carbamazepine for about twelve years through high school. I was absolutely fine, I made loads of friends and things, it all went kind of okay. But then when it turned seventeen it got a lot worse. I started a lot more seizures, and I had to try a lot more different types of medication to get it under control. It was at the point that the Lamotrogine, or Lamictal is the brand name, I started taking that and that was the most effective drug. But that’s when, you know, I started to get a lot of memory problems, I started having to deal with fatigue. And it really had a social effect on me as well, it really had a negative effect on my social life. I became depressed around the time and it lasted for about eight years. So yeah, that’s kinda how it panned out at that point. But I overcame depression when I was twenty-five years old, and ever since then I’ve kind of been rebuilding my life. And coming up with a plan of how I want my career to move forward.
FRAN: You say you overcame depression. Was there anything that stimulated that, that getting better? Was there anything that you did or something that changed?
JOE: Mindfulness meditation was what I started to practice. That wasn’t recommended by any doctor, it was just something I went looking for online to find out if there’s any other way I could deal with it. Because I was trying CBT for a while but it wasn’t working. And mindfulness meditation really worked to my advantage. I still do from time to time now, when I’m feeling a bit dull, you know, mindfulness meditation. I very much recommend it to other people if they’re feeling a bit low. And mindfulness actually has been introduced by the NHS now because they’ve come to realise how effective you can be. So, you know, you can discover it that way as well.
FRAN: Yeah, that’s a really good point. It’s something which has come into the mainstream, as it were, over the last few years. It’s something that I have never practised in terms of sitting down and thinking about it and doing it. But it’s something that I do try to live my life that way. And I think that hiking in particular could really help with that. I don’t know if you feel the same there.
JOE: Yeah, yeah, going on walking. It’s just getting the fresh air. Just putting a bit of effort in it just brings on a good sense of self-esteem. And that’s always important. That’s what you want to achieve. Yeah, it’s a handy tool to do as well. Walking around gives you a bit of confidence, I think, in yourself in your own abilities.
FRAN: I have to ask everyone this question. The website and the podcast is obviously called Seize Your Adventure. So what does ‘adventure’ mean to you?
JOE: Well, yeah, adventure is just the opportunity to go off into the unknown, really. You can plan out an adventure a bit beforehand, but you never know what’s really gonna happen, for sure. It’s never going to be easy, an adventure. It’s always going to be difficult at some point. But that’s one sacrifice that it’s worth it to make because it always leads to really positive things happening along the way. And afterwards you’ve always got the positive memories that come with it as well and, y’know, a great feeling of pride in what you’ve managed to achieve through an adventure, I think…
I want to take on many more adventures in the future. There’s no doubt about that.
FRAN: You mentioned that at the end of your story. Have you got anything planned?
JOE: I’ve not got anything planned as yet. I like the idea of going up by 1000 meters every time, somewhere different in Europe. Or maybe just 500 meters every time. There’s many different mountains to choose from, maybe go to different countries. Maybe make it more difficult, you know, give myself more of a challenge as time continues. Who knows? Maybe I’ll do Mont Blanc in the future, I’d love to get up there and do that. I feel it would be a great achievement for myself.
FRAN: Absolutely. Mont Blanc is one of those ones, it certainly seems a little bit more daunting as a mountain. You need a bit more mountaineering experience. I think, like you say, if you have it there as an achievement it’s perfectly doable if you work your way towards it.
JOE: You’ve got to plan it out pretty well before, no doubt. You know, I don’t see why it couldn’t happen.
[Short guitar interlude]
FRAN (in studio): I’d like to thank Joe for speaking to me so honestly. Some of the subjects he mentioned aren’t easy, but my hope is that us talking about it makes it better. If you’ve been affected by anything discussed, there are contact details for some organisations that can help in the show notes.
Now, I am very excited to get on to telling you about next month’s episodes. On the 14th February, seizeyouradventure.com turns one year old. I can’t believe it, I’m like a very proud parent I have a few celebrations planned. Several of you have been asking to hear more about my own story, and it is my turn. On Monday 4th I’ll be telling you about my relationship with hiking, my own epilepsy diagnosis and my hike along the Camino de Santiago. There’s going to be some recordings of music that I took when I was hiking, and some notes from my diaries, so even my friends that I’ve bored to death by now will have something new to listen to.
It is only fair if I answer some questions as well, so here’s where you come in. If you have a question for me, I’d love to hear from you. If you record yourself asking a question or two, and send it to hello at seizeyouradventure.com you might find yourself on next month’s show. If you’d rather, you can send me the questions in writing. Either way, please include your name and where you are from. I can’t wait – I think, please be kind.
I have a couple of shoutouts before I go. To Christelle, Clare and Marion, thank you very much for your orders from the shop and generous donations! If you’d like to see the kind of they bought or make a donation, the link is in the show notes.
And we are getting to the stage where it’s difficult to keep track of social media but I did just want to thank a few folk who were killing it with their shares and feedback on the last episode: Kathi from WatchMeSee, Sarah Williams from the Tough Girl Podcast, Jordan Wylie – you’ll be hearing more from him at a later date – and Epilepsy Action and Epilepsy Connections. Thank you all.
It really does help when people share this on social media. I saw a jump in listens this month, So please if you’ve made it this far, like it, share it, rate wherever you listen to it.
And as a post-credits reward, I did ask Joe if he had anything he wanted to say to the listeners before we go, so we’ll end on his answer…
JOE: What really got me, really frustrated me when I got epilepsy was the fact that I just didn’t know anything about it whatsoever. I am not saying if you’ve got epilepsy you have to go off and do a load of research. But it’s only going to work to your advantage. It is quite interesting to learn about epilepsy, I think. It’s quite complicated, but it’s sort of an interesting condition to have, in a way. Everybody thinks it’s a lot simpler than it is. God, you know, so many people I’ve had to explain it to, convince them that I’ve got all these memory problems and things. They think I’m talking a load of rubbish to begin with and then I finally have a talk with them when you’ve been chatting in a group, having a pint or something, I get my mobile phone up, bring up an Internet website page and just show them. “Look, I really do have these memory problems.” I feel kind of committed to doing that now. Proving a point for myself, remaining dignified.
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