JADE: When I was a runner for years, I had at least three seizures on three separate occasions while running. When I was playing ultimate Frisbee I had two seizures. And then when I was doing swimming, a seizure came on when I was swimming in the pool, and I was actually able to pull myself out in time, but I did have a seizure swimming. Yeah.
FRAN [in studio]: Hello everyone I’m Fran Turauskis and you’re listening to Seize Your Adventure.
You just heard a little bit of the conversation I had with Jade Nelson. If you’ve not listened to Jade’s story in Episode One, thank you for joining us for the first time. We do have a great episode lined up for you, but if you want to go listen to the first episode first it will give you a little bit more context to the conversation.
If you have listened to Jade’s: thank you for coming back! It means a lot to have you here. You’ll get to learn a bit more about Jade’s camping trip today, including the untold story of what Jade’s dogs got up to.
So this conversation between Jade and I was recorded a couple of weeks ago. There’s about a six hour time difference between us, and Jade kindly got up before sunrise to speak to me. It was a pretty intense conversation for that time in the morning, but it was so good to learn more about Jade. We talked about some of the activities Jade’s been involved in over the years, including karate, stand up paddleboarding, and ultimate Frisbee. We talked about some of her bigger adventures, and the small routines she does to keep herself active.
WE do of course talk about Jade’s epilepsy, and the various medications and treatments that she’s used over the years, including the ketogenic diet. Now, I just want to say that this is Jade’s personal experience. This is not medical advice and please do not take any action yourself based on what we speak about. You should speak to your healthcare team if you have any questions that arise from our conversation.
I’d also like to pre-emptively correct my ignorance. At one point during the conversation, I say that stand up paddleboarding is a new sport. I have since researched, and it’s not new at all. It’s been practiced in Hawaii since about the 16th Century. So, it’s actually one of the older sports that you can do.
Anyway, enough from present Fran, I’m going to hand over to past Fran so you can listen to our conversation:
FRAN (to JADE): So you obviously wrote the story Peace in West Texas and read it very nicely, I have to say. I’ve enjoyed listening to your voice over the past few weeks editing that one down. Such a calming voice. Was that the first time that you’ve been camping or have you been camping previously?
JADE: Oh, no. I’ve done tons of camping growing up as a kid of all with all the places I’ve ever lived in the United States, we’ve always camped or travelled to. So camping wasn’t anything foreign or new. I just hadn’t camped in Texas yet. We had done a little bit of outdoor stuff since moving to Texas, but not anything near like we used to do up in the Pacific Northwest or Maine when we lived there. So, it was kind of my goal to get out and camp. And here, there’s only very small windows when it’s comfortable to camp, because it’s so hot or extremely cold. So it was last year, it was March, the perfect time to camp around here. So that was my goal. To get out in nature, to disconnect, to be able to disconnect from my phone, email, social media and re-ground myself. That was the big hope and goal when I set out to organise that camping trip for my husband and I.
FRAN: So can you remember how long it had been since the last camping trip?
JADE: Oh, gosh, yeah, it was when we still lived up in the Pacific Northwest. So I’d say five or six years.
FRAN: Oh, wow. Yeah. If you’d done it a lot, that’s a long time. What did you do in those five or six years? Did you do something to fill that gap for camping? Did you get outside in nature in a different way or —
JADE: Basically I stopped most of the outdoor stuff when I moved to Austin as much because it was just a different kind of ‘outdoors’ here than I was accustomed to. Like I said, I liked the green and the ocean and all that stuff and, well, there’s not a lot of that around here. So, we would go to Barton Springs swimming, which is an underwater spring that comes up here in Austin. Or we’d hiked around the Barton Creek Loops. We do that a lot. I would get out on the river and paddle board, so those were different ways that I got out. I joined a couple of small hiking groups, but I can’t really call it hiking here. It’s more of a stroll because there aren’t any mountains or hills you really find. So those are the different ways that I kind of tried to get out there to begin with, just because I felt limited.
FRAN: I can relate to that living down South in London. There’s not many mountains around, so it takes a little bit of effort to get out there sometimes, definitely.
But you mentioned you have dogs.
JADE: I have two dogs. They’re brothers, they’re Lab and Great Pyrenees. Their names are Duke and Blue.
FRAN: That’s amazing. And, I’m assuming that they force you to get outside and be a little bit more active as well.
JADE: Oh, definitely. We have a creek not too far from our house, and a park, and they really love it there. And there’s trails through there, too, so we take them out there every day. They like to swim, and labs are big time swimmers, they’re obsessed with it. So, we usually go swimming a lot and take them with us.
FRAN: I can imagine they were in their element when you were camping then?
JADE: So much in their element – and this wasn’t in the story – that they ran off after a deer and disappeared into the bushes for a while. They came back with bloody paws, because in Texas, there’s lots of prickly weird things, and their paws were embedded with them. So, they had fun!
FRAN: [Laughs] Aw bless them! That certainly reminds me of some of our family dog stories. It’s always a deer.
FRAN: Did you find it difficult to make keto meals whilst you were camping?
JADE: No, I didn’t. The funny thing is, I ended up packing too much food. I didn’t need as much. It’s pretty simple. We did our coffee every morning with heavy cream and butter and then I usually only cooked us one meal a day, so it was always a pretty big one. But we did hot dogs one night wrapped in lettuce, so it wasn’t too bad. I just had to plan out the meals a little bit more.
You know, when I think that back in the day when I camped we would just sit around and snack all day, right? But I can’t, on a ketogenic diet, snack constantly. I have to be a little more precise. So I just planned out my meals like I would at home, but made them a little simpler since you’re basically cooking on the tiny little stove. So yeah, it wasn’t too awful. It was doable.
FRAN: Beautiful. So I started learning about the ketogenic diet when I started talking to you, essentially, it was something that I didn’t know about. How would you describe it to someone that doesn’t have any idea of keto?
JADE: I would describe it as a low carb, high fat, moderate protein diet that could be used for many different health issues or concerns. Currently in the mainstream, it’s seen a lot for weight loss. But in the 1920s, it was first being used to help control intractable epilepsy – so people who have uncontrollable seizures. That is the best way I would describe it to people.
FRAN: And you fell into that category. You had uncontrolled seizures, didn’t you?
JADE: It depends on if you ask your doctor what’s considered controlled or quality of life. And to me, the quality of my life wasn’t what I wanted it to be. It wasn’t so much that I was having constant seizures every day, it was that the medications I was put on were making me so sick that I could barely get through the day. It was more about the medication side effects that were so detrimental to me.
FRAN: What kind of medications were you on? And are you still taking them at the moment?
JADE: So at that time, when I made the decision to try the ketogenic diet, I was on Zonegran, I was on Gabitril, and I was on Vimpat. Three medications, and I ended up going off the Zonegran because that was the one that was making me so sick. It caused me to lose a lot of weight, and I was sick to my stomach all the time and I had no appetite whatsoever. So, I went off that one first. And then I have been, for the past year, slowly titrating – which means lowering meds – coming off Vimpat. I just lowered a dose at the beginning of this month. We’ll do it again in three months.
FRAN: How long have you been taking medication? When did your seizures start?
JADE: I had my first seizure a month shy of my eighth birthday, and I was diagnosed just after I turned eight. I’ve been on medication for thirty-one years.
FRAN: Thirty-one years. So it’s gonna be nice when you get to that stage of realising what your body is like without the medication, I’m assuming?
JADE: That’s the goal. I want beyond anything to know what I would be like without the medication. People don’t really realise that the medications we take can really alter who we are. For some it can, and for me, I went on it at such a young age I wonder if it’s affected me in ways that– my personality could be different, you know. Because a lot of anti-seizure medications are also used to help with different mental health issues as well. They do different things, depending on the diagnosis. So I always wonder, it’ll be exciting. I’m excited every time I lower the meds because I feel like my brain wakes up in a different way.
FRAN: Yeah, it’s a really good point. I remember – not so much now but when I first went on my medication, when I was first diagnosed – every time I went to the doctor with even a small thing like feeling nauseous or feeling tired, I would ask the doctors, “is it the epilepsy, is it the medication?” and all they would say to me would be “Well, it could be, it’s affecting your brain and your brain affects everything else” [Laughs]
JADE: Sorry, we don’t know!
FRAN: It tends to be the main answer for quite a lot of things, doesn’t it?
JADE: It does, it really does. That’s why I think sometimes, as patients, we have to do our own homework.
FRAN: Yes, absolutely. Obviously, something different will work for everyone. It’s not gonna be a one size fits all. As you say, the more you know, the more you learn, the more you’re likely to find a solution there. Definitely.
I got in touch with you — I’m trying to remember when? I got in touch with you about a year ago. Your profile just spoke to me, even though I don’t do the ketogenic diet. It’s not something that I would consider, partly because I have controlled epilepsy at the moment. My medication works and I’m thankfully on quite a low dose so I don’t have the difficulties that you had with the medication. But also, I really like carbs. I have a big connection with Europe, and Europe has a lot of carbs. We have a lot of pasta and rice and that kind of thing. For yourself, is that something that you do miss or do you enjoy the fact that you get to eat things that are sometimes classed as ‘unhealthy’ in other diets?
JADE: It depends on who you ask at to whether it’s classed as ‘unhealthy’. If you’re looking at the food guidelines here in America… But, no. I don’t miss it because the quality of my life has vastly changed. The clarity in my mind has changed, so I don’t miss the candy I used to like to eat and the excessive baked goods. I mean, I was definitely a sugar-holic [laughs]. But I don’t miss it at all because I’ve become a great cook and I can make tons of things that don’t make me feel like I’m missing out on anything.
So to say I miss a specific type of thing – I just don’t. It actually has simplified my life even more. For some people, that’s hard to believe because it can be a lot to take on altering your diet in this fashion. But it has simplified it because it cuts out pretty much everything that’s marketed to people that eat packaged stuff, I can’t eat it. It’s that simple, so it saves money also.
FRAN: How did you get into Paddleboarding? Because in the UK it’s a fairly new thing. I don’t know if it’s still a fairly new thing over your end as well?
JADE: I basically got into it because we have this thing called Meet Up here, I don’t know if you guys have it there, but you can go online. There’s all kinds of events and things going on. This one company here in Austin – when I first moved here, I was living here by myself, my husband was still up in the Pacific Northwest. I wanted to go out and socialise, and one of the events they did every Thursday night was free paddleboarding. So I would go out after work on the river and paddleboard for an hour, for free. And I got hooked. I just loved it.
So I started finding other groups and activities and we would plan times to go out together. And then once we got the dogs, they would come out with us on the board as well. So that’s how I started getting into it. And then I kind of upped my game and started doing yoga on a stand up paddleboard, too.
FRAN: Hang on, you got the dogs on the paddleboard?
JADE: Yeah. One sits on Erik’s paddleboard and one sits on mine, and they’re at the head of the board and we just paddle around. They’re both about 75lb apiece, so it’s a little extra work out.
FRAN: That’s amazing. I need to see some pictures of that one!
JADE: I have pictures of it, I do.
FRAN: I’ll be searching for that.
So, you started doing it by Meet Up. When you joined that group initially, did you tell them that you have epilepsy. Did you give them information?
JADE: Nope. No, I didn’t tell them anything. That’s not the first thing I lead with, not even back before the ketogenic diet, before my seizures were controlled. I’ve never led with “I have epilepsy”. I just didn’t.
I will say, though, that when my seizures were bad, when we were paddleboarding, my husband would try to just paddle right next to me. But no, I never would go to the group and announce that. I never wanted that to be who I was. It wasn’t gonna be “oh, that’s Jade. That’s the girl with epilepsy.” Even though that kind of happened [laughs]. I just never wanted it because I wasn’t in a good place of acceptance with it yet, where I felt like I could say it and not feel like someone was automatically judging me.
FRAN: Can you just explain a little bit about the type of seizures you have and what that would entail?
JADE: I have what’s called temporal lobe epilepsy. I have a scar on the left temporal lobe of my brain, so the seizures usually originate from there, but may go into other lobes of the brain. And I have what are called ‘complex partial’ and ‘simple partial’ seizures. They definitely changed over the years. If you were to ask a doctor right now, they might not even be able to tell you exactly what kind of seizures I have because sometimes they change and evolve as we grow and our brain changes. That is what I’ve been officially diagnosed with.
FRAN: Tell us a little bit about your karate.
JADE: The karate I started a year ago, just because my feeling is as our bodies age, we can’t always do exactly the same things we did when we were twenty. I like karate because it’s both a physical thing and a mental thing, and it really brings you back into your body and grounds you to be spatially aware of the things around you. And one of the big reasons was it was something I had never done before and it was going to force me to stretch and be uncomfortable in the sense of doing something I’ve never done before, not feeling confident doing it. So I started going to class and I cried a lot, and I struggled with it because more than half of it is also taught in Spanish. And I am not fluent in Spanish, you know?–
JADE (cont): So it’s been an interesting thing, it kind of has grown on me. And I couldn’t imagine my week without karate.
FRAN: That’s so good. So now you’re kind of feeling more in your comfort zone. You’re more relaxed with it now.
JADE: Oh, definitely very, very much more relaxed than I was before.
FRAN: That’s fab. I’m still at this stage– I just started climbing– I say ‘just started’. I just started climbing about this time last year, but I haven’t done it as regularly as I’d like to. I’m at that stage of going along, and every time I’m looking at that wall and going, “I can’t do that, that’s too hard for me”. But as you say it’s trying to find something which is a good mix of physical and mental. I think it’s really useful for us to get your head into something other than itself for sometimes. If that makes sense!
FRAN: And did you ever have a seizure when you were doing any of the sports? So paddleboarding, karate is fairly new… but any of the sports that you enjoyed in the past?
JADE: Yes. When I was a runner for years, I had at least three seizures on three separate occasions while running. I lived in California at the time, so it was really hot, and heat is a trigger. When I was playing ultimate Frisbee, the years I played that I had two seizures during ultimate on two separate occasions. And then when I was doing swimming, competitive swimming, a seizure came on when I was swimming in the pool, and I was actually able to pull myself out in time. But I did have a seizure swimming. Yeah. Wow. No-one’s ever really asked me that one and now I lay that all out for you, it sounds like a lot [laughs].
FRAN: Sorry, I jumped that one on you as well!
JADE: It’s totally fine. These are the questions people need to hear, because you know what? I got right back in the pool and swam within a week, and I went right back to running. I went straight back to Ultimate as soon as I could. It doesn’t mean that I wasn’t scared, because I was. All the time, especially after that. But I think when you love something, you enjoy it you, allowing your diagnosis to stop you from doing it, it does a detriment to your mental health more than anything. I think sports, for me is always going to be a huge outlet. That’s the thing that brings me back to a body that has so often betrayed me.
FRAN: I hear you with that one. It’s one of the ones I definitely keep going back to, the idea of working with your body when you’re doing the sport as opposed to a feeling like it’s against you. It’s a nice feeling.
What does adventure mean to you?
JADE: Well, [laughs] the funny thing is, I thought about this question a lot last night as I was falling asleep and what I kept coming back to is adventure literally, to me is a state of mind. It isn’t any just one thing or activity, but you can find adventure in all parts of your life, it’s just how it makes you feel. But when I’m thinking about adventure, it’s usually planning exciting, challenging, completely off the wall things that everybody goes “Oh, I don’t think you should do that” [laughs].
FRAN (laughing): I think for people of epilepsy quite a lot falls into that category doesn’t it?
JADE: Oh, yes! And then that’s where my response comes: “well just watch me.” [Laughs]
FRAN: Yes! The best mentality, it really is. So what’s the biggest of those adventures? What’s the biggest thing that has ever pushed you out of your comfort zone or the biggest thing where, maybe somebody has said to you, “you can’t do that. You shouldn’t do that” and then they had to watch.
JADE: Well, I lay in bed for an hour with this one as well, Fran, because– you have seriously made me think about– I didn’t, I don’t think my life is adventurous. I never really thought about it. But then, when you start asking me questions, like you do, and emails or whatever I’m like “Oh, God, yeah. Apparently I have done some really crazy things. I didn’t realise that”.
But if I were to say my favourite– okay, there’s three. Okay? The one I would categorise as the most beautiful experience is when I flew up to Alaska. I spent a week there on the Kenai Peninsula, hiking and climbing glaciers and all of that awesome stuff. And eating tons of wild game that half of it, I didn’t even know what it was. I was literally out in the middle of nowhere. It was the kind of place where you stepped out in your front yard, and there was a moose there and stuff like that. So that was one of the most beautiful trips I ever went on because Alaska is completely untouched. Out of all the places I have hiked, camped, travelled, all over the U. S. Alaska is the one that’s the most untouched. So to me, that was the most beautiful one.
But if I were to do one where someone said “oh, we don’t know if you should do that”. I once flew to St Louis to stay with my friend, and then I proceeded to get on a bus and drive all through the South on a Greyhound bus, all by myself. My family wasn’t excited about that because I was by myself and I was young. That was a fun trip and full of very interesting people [laughs].
And then the last trip, one big trip– any trip where I get to go solo tends to be my favourite. It’s where I feel the biggest growth comes from, and when I finished my bachelor’s degree in community health, my husband said “you should go on a trip”. So I planned a month long trip that had me leave Portland, Oregon, and I flew into DC– Philadelphia. Then I took a train and worked my way down. I went and saw the reenactment of the Gettysburg Battle, the 150th reenactments. That was like stepping back in time, that was pretty amazing. I drove around a lot. After that, I worked my way up to Maine and I went to Boston and I basically did a very historic thing. Went to Boston after Gettysburg and then DC for a few days, doing a kind of historical thing. I love history.
FRAN: That just sounds fabulous, all of that.
Is there anything you do every day? You talked about the small things as well. Is there a small thing that you do as a ritual?
JADE: Every single morning, Monday through Friday, I get up and I have a fifteen or twenty minute workout – whether it’s abs or arms and legs. And then I do yoga every single morning, whether it’s for ten minutes or an hour, every morning starts on my mat in my office, in the dark. That is what allows me to feel grounded and to start my day, because the type of work I do – whether it’s advocacy or taking care of my massage clients – I’m giving. So I have to start every day by giving to myself and making time for myself.
FRAN: Was that something that was difficult to get into every day?
JADE: Well, I’ve been practising yoga for twenty years. I started back when yoga wasn’t cool in the States. It was kind of a hippie-dippy thing. There weren’t yoga studios or yoga teachers. The only teachers around were ones that actually had gone to India and come back. My teacher was well into her seventies. Nowadays it has become a little easier because you’ve got all the YouTube videos. I feel off when I don’t do it, it was easy to get into it. I’m the type of person that writes out a whole schedule to everything. Everything has a schedule. So it wasn’t too hard. It’s consistency. Now, when I don’t do it, I’m off.
FRAN: I’m the opposite. I’m not consistent in anything.
JADE: That’s a lie, Fran. You’ve been pretty damn consistent with the magazine and all of this. I think you just gotta have the right thing, right?
FRAN: So if somebody has recently been diagnosed with epilepsy or they’re in a difficult stage of it at the moment. What would you say to them?
JADE: I would tell them to hold on to who they were before the diagnosis, because that is exactly who you still are. You know that diagnosis doesn’t have to change who you are. You can still be that active person you always have been, you just might have to think a little bit more in what you do. But don’t allow any diagnosis to limit you. For me the most important thing is to educate yourself, to seek out other people that might be living with the diagnosis, but are living well with it and doing everyday things. And remember – and I know people can get upset when I say this – but it is just a diagnosis. I know it’s a diagnosis that can alter your life, but you can decide how much it will alter things.
When we have a seizure, yes it’s this massive setback, and it feels like taking fifty steps backwards. But it’s only one snapshot in time and you have your whole entire life and you can’t base it on that moment of that diagnosis, or base it on what you can’t do. Focus on what you can do, no matter how big or small or little it seems, because before you know it, you’ll be doing so many more thing and this diagnosis you have will just be this small part of you and not all of who you are.
[Short guitar refrain]
FRAN (in studio): So there you go. What did you think? I hope that you might be inspired by the conversation or perhaps want to even try some of the activities we talked about or maybe go on your own adventure. If so, I do encourage you to talk to your epilepsy team. So that’s doctors but also family and friends. And speak to some people who are familiar with the sport as well, and see if it’s suitable for you.
If you’d like to know more about the ketogenic diet, there are some articles on the Seize Your Adventure website. The links to those are in the show notes, and you can of course head to Jade’s website as well. It’s jadenelson.net. You’ll find out more about the work that she does as a motivational speaker and an epilepsy advocate, and she also has recipes on there.
Next month we’ll be hearing from Joe Stevenson. Joe is a writer and a hiker, and his epilepsy has been severe at times. But despite this, in 2015 Joe decided to make some money for the charity Epilepsy Action by hiking Ben Nevis. Here he is just telling us a little bit of the story.
[Sound of hiker on path]
JOE (over): And so we began. The walk was no race, but I can be a bit of a perfectionist; on average it takes six to seven hours to get up and down Ben Nevis, and I wanted to walk it within that time frame. We followed the main Mountain Track. Once known as the Tourist Path, it was only natural to find myself looking up and out frequently: soaking up the sights; taking a few photos.
[Hiking sound fades]
At that time of the year, the mountain was still a little green, but there was starting to be a mix of shades with the brown and grey rock. I felt nice and fresh being out there in the country.
FRAN (in studio): That episode will be out on the seventh of January. So hit ‘subscribe’ now and you won’t miss it.
If you like today’s episode, can I ask that you just share it with one person you think might like it and feel free to send me a message with any feedback you have. It really is lovely to see what you think.
Before I say goodbye, I asked Jade if there was anything she wanted the listeners to know, so I’ll let her close the episode for you:
JADE: This is a thing I still see a lot of and I’ve been diagnosed for 31 years. I would think at this point that it would be gone, but all the stigma, the myths and the miseducation around epilepsy. And I think– I don’t think, I wish people would share more about it, but share about it in a positive light. I think if more people were sharing about their diagnosis and treating it like, you know, “I have diabetes” or “I have whatever…” In a way that was more casual, it would lessen the fear around it. Fear for both individuals with it and the people around.
It takes time, though. It’s not something that happened overnight for me. That’s what I try to remember when I’m sharing my story now, is there weren’t always times like this, so if I were to say one last thing, it would be: if right now you’re listening and you have epilepsy and you feel like life is just awful, I can promise you it can get better. You just have to keep trying different things, educating yourself and getting out until life and enjoying all the small moments. Because life’s too short and you should never let one thing that happened in your life alter the rest of it.
I am way intense, aren’t I?