JAKE: ...when you're experiencing joy, you're experiencing excitement, you're experiencing fear, you're experiencing intimidation and when you're feeling all those things and you're putting yourself in situations that are challenging but have a destination, have an end point that brings you somewhere that just feeds your soul.
FRAN: Hello, adventurers! It's Fran Turauskis here and you are listening to Seize Your Adventure. You just heard Jake quickly talking about what adventure means to him. And as you can already hear, this interview is going to be very profound and insightful. Jake is the Executive Director of a nonprofit organisation called Outdoor Mindset, and that's a membership based community that unites and inspires people affected by all kinds of neurological challenges. And it does this by getting people outdoors and taking on joint adventures together.
In the last episode, Jake took us through what he called the ‘scariest period of his life’. Jake had brain surgery eight years ago to give him the chance to carry on living the adventure lifestyle. If you haven't heard that story yet, you might want to just head back and listen before you hear our chat. It is an incredible story. If you've already done that, I won't keep you any longer. This is what happened when I spoke to Jake Quigley a couple of weeks ago. Enjoy.
FRAN (to Jake): As we heard in the story, Jake, you've called a few different places home over the years, including Colorado and New Hampshire. Can you tell us where you're currently based?
JAKE: My wife, Jeannie, and I are currently based in Tucson, Arizona. So down here in the southwestern Sonoran Desert.
FRAN: So, I'm assuming not as much skiing going on in that area now?
JAKE: Not as much skiing. We are surrounded by five major mountain chains, one of which does ascend up to 10,000 feet, so there is snow, not too far out of the desert floor, that you can go up and explore on your skis a couple times a year, if the conditions align. This year, we were able to go up and ski a few times.
FRAN: That's fabulous. And would you say that skiing is your preferred sport, then?
JAKE: Skiing and mountain biking are what I spend most of my time doing year round. Skiing in the winter, for sure, we travel back to Colorado a lot. I like to ski throughout the Pacific Northwest wherever I can, Jeannie and I are both skiers. And then mountain biking for the other three seasons of the year.
FRAN: We'll get onto the mountain biking in a minute because that's something I'm very interested in. I've never done it and I don't know very much. Skiing-- I've done cross country skiing, but not downhill skiing. So how did you get into downhill skiing?
JAKE: I came from a family of skiers. I'm the youngest of seven and all my siblings were skiers, and I just kind of got forced into it. If I was gonna go out on family winter vacations, it was gonna be on skis. So thankfully, I took to it, and really enjoy it. I shortly got into a stint of snowboarding after that. And when I moved-- relocated out to Colorado, I picked up telemark skiing, which is what I currently do. I spend most of my time with my heels free, doing lunges down the hill.
FRAN: Can you just explain telemark skiing a little bit more? That's something that's new to me.
JAKE: It's a downhill version of cross country skiing in that your heels are free. So when you're going downhill making alpine turns, you're lifting your heel, and you're getting lower to the ground.
FRAN: Okay, that sounds fabulous. And does that give you more-- the more freedom of movement, then?
JAKE: Yes, it does. That's what really resonated with me was-- I call it the perfect combination of power and grace. It's a very artful turn, but it's also very powerful. And you can ski all sorts of terrain, super steep terrain, trees, and have a lot of fun. It's almost like being able to absorb the force and get lower into the powder when it's deep snow.
FRAN: Yeah, fabulous. So as you say that, I can hear in your voice that it’s something that is just so integral to your being. And we heard, very nicely, in your story that it's something that you could use as an escape, particularly at that time before you were having your brain surgery. Can you tell us how skiing and epilepsy got along in your life before that? Did you have to make any adaptations?
JAKE: Well, I think my mindset with epilepsy when I was diagnosed at, I believe age 11, my father is a retired surgeon, and he and my mom saw my first seizures. He sent me to a friend who was a neurologist, and I was diagnosed. And I think having a physician for a father, it was never feared as a diagnosis. When I was little, it-- he never feared it, my mother never feared it, therefore, I never made that big of a deal out of it, emotionally, and never let it hinder my lifestyle. I continued on playing sports like hockey and lacrosse and would have seizures from time to time. Most of my seizures growing up were in my sleep, and it just never really hindered me. And outdoor activity ever since has been very much a kind of a prescribed medicine that I needed to keep that in perspective.
FRAN: Yeah, that's fabulous and what I think you hit on really nicely there, is that idea of the fear that a lot of people have about the condition. I think people get afraid not only of the condition, but also for you when you have it. Did you find that you ever had people telling you not to do those things? Did you have anyone who was worried about possibly skiing with you?
JAKE: I have. Whenever I would go to a new environment, whether that was college or moving to a new area. And people would see a seizure or learn about my condition, it was always at the forefront to people that I was meeting, that didn't know me, didn't know the way that I carried on with my lifestyle and, oh, you know, showed concern. But as they got to know me better and saw that I didn't let it end my quality of life, they kind of realized that.
FRAN: Yeah, And how did you approach that? How did you help them realise how you can live with it, well?
JAKE: I would always explain it as epilepsy is something you have and it's not something that you are. In saying that, what I mean is-- you always have a choice, too. Dealing with a diagnosis, one thing is that that diagnosis creates a limiting factor, which is very much a mental decision to say ‘I have this diagnosis. I'm choosing to make these adjustments.’ I have never really allowed that to happen. I've always met it with the resistance of how do I maintain that lifestyle that I choose to live but doing it responsibly as well.
FRAN: And when you say responsibly, are there any points where you have made the decision to not do something because of the chance of a seizure?
JAKE: Yeah, I was always lucky enough that I do have auras or have had auras throughout all of my epileptic phases. And those allow me an opportunity to step back, realize what's going on, and put myself in a safe space. And that's not always. But I always try to do things with other people. I never do things on my own if I can avoid it, in the event that if something were to happen, at least I have someone with me.
FRAN: So when you talk about auras, there, just for people who might not be familiar with the term, these are often seen as warning signs for bigger seizures, like tonic-clonic seizures. Can you describe what those auras felt like? How you experience those?
JAKE: Mine are very much deja vu. I will have a lightheaded feeling. I would have a sense of something very, very familiar that I'd seen before, or that I'd heard before. Not necessarily that I'd had but it would somehow align like that, and immediately I would know that feeling. I would get dizzy. It would give me that opportunity, in most instances, to sit down or do something. Too prepare for an oncoming seizure.
FRAN: Yeah, absolutely. That's something that I imagine would be very difficult to see from the outside, wouldn't it? So you have to rely on yourself. You have to really know your own condition to be able to work with it in that way, and to understand when you do need to take time and sit back a little bit.
JAKE: Yes. And if I was able to-- in certain instances I would be able to verbalize, “ I think I'm about to have a seizure”--
JAKE: --or get part of that out.
FRAN: Which is certainly helpful for the people around you, I can imagine.
FRAN: Yeah. I'm not certain if I ever verbalized it myself that well. [laughs] Apparently I gabble, not quite certain if that helps…
JAKE: Most of the time, that's what would happen to me as well.
FRAN: Speaking of adventures, obviously the story that you told for us, it gave us a really nice idea of what-- what must be one of your bigger adventures, when you went hiking with your wife in the Himalayas. So can you tell us why you decided on the Himalayas in particular? What it was about that area that drew you there?
JAKE: I would have to say that my wife was the driver behind that one. She is very much an adventure seeker on a grand scale. International travel, mountains we've never been to. She's always the driver. So I'm always excited that I have a partner that is down for big adventures. And that's what led us to the Himalayas. Part of it was my recovery from my temporal lobectomy surgery, and the other was to celebrate our wedding anniversary during the only open window for her at the end of her first year of medical school. It would be the last big chunk of time she would have to do an adventure like that. So that was when we decided we're gonna go check out the Himalayas and challenge ourselves with three weeks of trekking, along the northern tip of India. And we followed down the Pakistani border and ended our trek in Kashmir.
FRAN: And you did that independently, didn't you? You didn't go with an organized group.
JAKE: We did not. We were just the two of us.
FRAN: So how would you suggest to people that might be thinking of doing something like that, independently-- How would you suggest that they go about doing it?
JAKE: I would definitely recommend, if you have people that you know closely and have been to a region, and you can spend a considerable amount of time researching with those people. We were fortunate enough to have two good friends that were mountaineers that had been to that very region, the Ladakh region of the Indian Himalayas. So we were able to meet with them several times, look over maps, different trekking routes. Definitely having ample medical training, independently of yourselves, first aid, CPR at a minimum. And wilderness training of some level is very important for at least one, if not more, members of the group to have. And being aware of the region and certainly knowing how to pack, considering worst case scenarios and all of those things that go along with it. Just being really well prepared.
FRAN: Talking about doing the wilderness training, is that something that you did-- were you taught that by an organization or by a particular person?
JAKE: Yes. Here in the United States, there are various companies and organizations that will do wilderness certifications, similar to getting avalanche terrain certification. And it's usually a three to five day training, and it goes up from there. How substantial a training that you want to take WIFA training, which is Wilderness First Aid training, is a three day certification training that I would have to take for work because I'm also an outdoor guide and I go mountain biking and backpacking and trekking, and I need to have that at a minimum. And they have to be renewed every two years.
FRAN: And aside from that training, were there-- was there anything that you had to take into consideration, particularly around the epilepsy? So was there anything from medical insurance, for example, or to do with the altitude? Is something people asked quite a lot.
JAKE: Yeah, you know, altitude. It's interesting you bring that up because there is a lot of speculation, that I understand, around that. Some research saying the altitude can play a great deal in promoting or triggering an epileptic seizure. And then other research says, ‘Well, not so much’. So I'm not a neurologist, I don't know at a clinical and research level the answer there, but certainly something we took into account because we were traveling upwards towards 15 to 20,000 feet. We were very careful. Jeannie knows my seizures. She knows how they present. She knows how I recover. She knows what to do in that situation. So any time you're putting yourself into the backcountry that's the first-and-foremost, is knowing that one of the people in your group has epilepsy and making sure that everybody is comfortable with it. And if nobody's comfortable with it, that poses a problem that could inhibit your ability to do a trip like that safely.
FRAN: Yeah, I think that's really good advice. It's nice to hear it from someone that has been through-- been through the whole process and that. And like you say you're a mounting guide as well, and you do the mountain biking guiding also. Can you tell us a little bit more about the mountain biking? How you got into that side of things.
JAKE: That's been more recent. When I moved out to Tucson, I learned about a company out here that was a mountain bike guiding company. And I've always enjoyed guiding backpacking trips or doing experiential learning, Outward Bound type courses with everything from youth to college students and professionals in the corporate and business world. So stepping into mountain biking was purely off of my interest in teaching people the skills of mountain biking and exposing them to the beauty of the outdoors in a completely different way. And so that was how I got involved. I’ve mountain biked since I was 18 years old, and so I've been on a mountain bike for a long time. It's just another way to pursue that passion of riding under.
FRAN: So if you were doing something, like with me, for example-- I've never been mountain biking at all. What would that first session look like? What kind of things would we be doing?
JAKE: What we call it is fundamentals. There is a series of 10 fundamental skills that we coach as instructors and mountain biking, and they're basically skills that allow you to feel more and more comfortable in the environment of unpredictable trails, single track trails where there's a lot to pay attention to. There's a lot to feel on your bike. And when you learn those skills correctly it makes you a safer rider, a more confident rider. And it's really quite fun to watch somebody acsend their skill level from a beginner, to an intermediate, strong, competent rider that really has a good time because they're not injuring themselves and taking spills and falls.
FRAN: And have you ever had any injuries or or falls from the mountain bike?
JAKE: Oh yeah, I've had several.
FRAN: Is that par for the course, I take it?
JAKE: It is to some extent. You know, every-- every risk has its unfortunate endings from time to time. But that's the risk of experiencing life in a way that I feel is integral, to how I live. I need that time in the outdoors. I need that adrenaline. I need that experience, just experiencing things on a regular level that provides me a level of mental health, that is really helpful, puts a smile on my face, makes me feel like I'm out, living life as full as I can.
FRAN: Yeah, absolutely. So bringing it back to your brain surgery, that's something that you spoke about in your story, that you made a promise to live life to the full afterwards. How did you decide-- this is a very big question, I'm sure, but how did you decide that brain surgery was the best option at that point? How did you come to that decision?
JAKE: I had a very, I would say, unfortunate change in the presentation of my epileptic seizures and how it impacted me on various levels. Within a few-years-period, I started to see, or I should say, my wife initially started to see an increase in my seizures. I started to have more and more of them. I was having them not only at night or early in the morning, but I was having them during hikes, having them during hockey games. I was just starting to have a whole different spectrum of seizure activity that was new and quite frightening because it was happening so often. I was having several seizures a week, on multiple occasions through about a two-year span that we just started to see all these side effects. I was having complications with focus and concentration that was affecting my work. I was having significant memory loss. I was forgetting National Parks that we had visited. Jeannie would talk about experiences that happened a year prior, that I would draw a complete blank, and a trip like that typically isn't something anyone would forget. And I was also having emotional-- high levels of anxiety, which are very uncharacteristic for me, as well as fear. And it was all just kind of steamrolling me to a point where I went to a group of neurological epilepsy specialists in Denver, Colorado, And they were the ones at that point that decided: ‘at your age you failed several anti epileptic medications. We put you on a cocktail of medications and you're still failing. Your really last option is to consider this brain surgery if you are a candidate. And that was the scariest thing I think I have ever heard in my life.
FRAN: I could only imagine, and you can hear from the way that you're talking about it there, that it was just eating away at who you are as a person from the sound of it. So I-- I have so much admiration for you to be able to go through that and make that promise to yourself that after that surgery you would come back even stronger. And it certainly sounds like you have. It certainly sounds like you're making the most of it.
JAKE: I try to and I've been-- I've been very lucky. I have not had a seizure since my second surgery, and I am extremely, extremely thankful for that. It has changed my life. It gave me my life back. So really, really lucky.
FRAN: It is. It's just fabulous to hear. So how many years is that now without a seizure?
JAKE: Ah, it's been eight years, eight and a half years now.
FRAN: Eight and a half, that's great. It's great to hear those stories.
As I say, you are someone that I personally admire. But do you have anybody that you particularly look up to? Anybody that you would say you admire as well?
JAKE: I would have to say that is, by far, the woman that I met prior to surgery. Her name is Diane Van Darren, and she's pretty well known in the epilepsy circle, her story. Diane’s an adventure athlete for the North Face. She had the same surgery that I had eight years prior to mine, and I met her through the Craig Hospital in Denver. And as I was considering this enormous decision, I met her and as much as physicians can tell you what's going to happen, and as much as family and friends can support you through the process, nobody can relate like somebody who's actually gone through it. So Diane, who had this temporal lobectomy leading up to it with very similar symptoms, she was just instrumental in as these evasive tests would go. And I would have to go for multiple day hospital visits where they would do invasive tests and things that they needed to do to determine if there was a focal point to my seizures. And she would just tell me exactly what it was, how it was gonna feel. And that pulled me through the whole six months leading up to that surgery, that first surgery.
FRAN: Yeah, it is.
JAKE: She is just an inspiration in herself, her story, and I encourage anybody to look her story up. She’s in articles, television shows and she travels around the world telling her story.
FRAN: Yeah, absolutely. It's-- I'll put a couple of links in the show notes, in fact, because as you say her story is pretty amazing. And she just turns up on podcasts and TV shows and that kind of thing quite a lot. So absolutely go out and have a look. Diane Van Deren.
Given what you've gone through since you were quite young-- 11 years old, you were diagnosed-- Would you have any advice or anything you'd like to say to somebody else that is perhaps going through a diagnosis at the moment or they're having a very difficult time with epilepsy?
JAKE: Yeah, that's an interesting question. I think a few things: One is not forgetting that you have some control over the situation. It's something that as much as it's devastating to hear you have this thing going on in your head that you necessarily can't control, there are a lot of controllables, and that is how you treat your body, how you emotionally treat yourself, how you choose to keep a positive attitude despite all of the challenges that happen and certainly reaching out to other people that can share what it's like. It's really important to get that perspective because it helps you realize “I can make it through this. I can manage this. I'm meeting people who support me through it and hopefully finding the right people that insist on making their quality of life as positive and meaningful as they can.” And those are the people you wanna hang out with. And that will also dispel the fear. Because the more that you associate with people who have experienced it, the more they've been able to rationalize it. And that will take away from that stigma that typically shows up. “Oh, my gosh, I have epilepsy. Life is over.” Instead of that, you talk to people who say “you have epilepsy and your life's gonna be okay.”
FRAN: Would you say that there's been a change in attitude from how epilepsy was seen when you were younger compared to now?
JAKE: I think so. With being involved in Outdoor Mindset, I've been to a lot of functions, Epilepsy Foundation functions and other neurology functions around different diagnosis such as MS and Parkinson's, and I think a lot of the research, particularly with things like Parkinson's and MS, are actually starting to show and indicate that exercise is one of the best things to inhibit the progression of symptoms in a lot of neurological disorders. So not only from a physical standpoint, or, I should say emotional standpoint, which is pretty much across the board, exposure to the outdoors and depression and anxiety-- it's always shown to be an instrumental positive influence on those disorders, but also just the physical exposure is really starting to gain hold. So I think the progression of seeing it with less amount of fear is opening people's eyes to “This is just a small portion of who I am.”
FRAN: I ask everyone this so I have to ask you as well: how would you describe adventure? What is adventure to you?
JAKE: To me, adventure brings out the spectrum of human emotion, and I think that is, that's when you know you're living life to the fullest. When you're experiencing joy, you're experiencing excitement, you're experiencing fear, you're experiencing intimidation and when you're feeling all those things and you're putting yourself in situations that are challenging but have-- have a destination, have an end point that brings you somewhere that just feeds your soul. And I know that doesn't resonate with everybody. For me, it resonates significantly. An adventure is just that: it's the showing up on any given day, in any given weather, in any different environment and taking advantage of it for what it offers. And it feels good. It just feels good. It puts your heart and your mind in the space that makes you feel confident. And that's really important, when you're dealing with a diagnosis, is confidence and positivity and the ability to deal with the challenges that’s thrown at you, which the wilderness does all the time.
[Short music interlude - The Lonely Lake by Kev Rowe ]
FRAN (in studio): I'd like to give such a big thank you to Jake for telling his own story and talking about his experiences with such honesty and passion. But I'd also like to thank both Jake and Kyle Martin, who is the founder of Outdoor Mindset. They have both been such a support for me over the past year, and Outdoor Mindset is possibly the only other organization out there who can really appreciate the epilepsy/adventure crossover. If you don't know much about them, do head over to outdoormindset.org and see what they're all about. You can join up for free and it's a great organization to be part of.
Now, Seize Your Adventure is created completely out of passion from guests like Jake and from myself. I run the podcast in my spare time around work and, of course, my own adventures. This is a completely independent production. I am in my bedroom right now on a Friday night trying to finish this before I go to see my family for the Easter weekend. And, I love doing it. I love hearing from all of you what the episodes mean to you and I love hearing all of your stories when you get in touch with me. But of course, these things do take time and energy and as everything, it does cost money. So if you enjoy the results, there are a few things that you can do to support me in this.
The first thing won't cost you any money at all. And it'll take barely any time. Please just hit the ‘subscribe’ button, leave a review and share this podcast. Tell someone about it, tweet about it, share it on Facebook. And don't forget to tag @SYAdventurers so that I can see and I can thank you. I do thank people in the podcast who are supportive. So do get sharing and you might find yourself on the episode next time.
The second thing, if you are able to give financial support, there are currently two ways that you can do that. If you head to seizeyouradventure.com/shop, you will see there's a bit of merchandise you can buy. If you do not own an enamel mug, you are not an adventurer, so please grab one of those if you don’t have one already. And send me your photos if you already do have one, they are great to see. You can also make a donation in the shop, so that would be donations that helped me to pay for things like the website space. So please, if you are enjoying the content, do consider just donating a little bit there.
Next month, I will be taking things back to basics. I'll be looking at what adventure means to different people and talking about some of the adventures I have coming up over the next 12 months, and who I will be doing them with. Subscribe now and that one will be out on the sixth of May.
As always, the last word goes to my guest. Towards the end of our conversation, Jake and I got talking about the challenges that we had coming up, and he and his wife, Jeannie, are taking on something big this July. So have a listen. Get ready to be jealous.
And until next time, safe adventures, everyone.
JAKE: Right now we are planning a trip to Peru. We would like to go and do some high Alpine adventures down there. There's some pretty majestic, big volcanoes in Peru. We're looking at other opportunities to take on a challenge and see some beautiful parts of the world. My wife and I have not been south of the equator yet, so it'll be a new adventure in a new part of the world. We're pretty excited about that.
FRAN: Can I come?
FRAN: Quickly looking at how much flights are.
JAKE: Get on, get on Kayak, figure it out!