Battling the Brain: A Neurological Illness Backcountry Skiing

This article originally appeared on Backpacker

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We’ve written about the Spearhead Traverse before as The Best Worst Ski Trip Ever. But in this story, we explore the challenges of neurological illness in the backcountry. Backpacker Magazine's former Editor-in-Chief Dennis Lewon, shares his personal journey battling a rare brain disease while backcountry skiing on a glacier in British Columbia. From navigating double vision on a treacherous ski trail to overcoming a neurological condition in the wilderness, this episode is a testament to the power of determination and “there’s nothing going slow can’t fix”.

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Usually the Out Alive team searches far and wide for stories to feature on this show. We scour the internet, read accident reports, and sometimes listeners like you will reach out with tales of your own. But for today’s story, we didn’t have to look too far at all. In fact, all we had to do was walk down the hall and knock on the office door of our former boss.

Trailer: I made a decision to survive. You’re in that survival mode. The idea of dying wasn’t in my head. I knew immediately it was the worst-case scenario. I was in a fight-for-my-life situation. Whenever you walk out on these trails, you’re in their house. I’m Louisa Albanese and you’re listening to Out Alive by Backpacker. In each episode of this podcast will bring you real stories of real people who survived the unsurvivable. I saw the rope zip through the repel ring. And I couldn’t do anything, learn what went wrong, what went right, and how you can escape. If the worst-case scenario happens to you. There is no way we would find anybody alive.

Dennis: I’m Dennis Lewon. I am currently the director of content in the marketing department, Outside Interactive. About five years ago, I was the editor-in-chief of Backpacker. My team and I went to British Columbia to do what’s called the Spearhead Traverse. This was a gear testing trip for the Editor’s Choice Awards.

We were going to be skiing for four days on a traverse that connects Whistler and Black Comb ski resorts in British Columbia.

Host: The Spearhead Traverse is a little over 20 miles with over 6,000 feet of climbing. While some experienced skiers complete it in a day, the Spearhead involves glacier travel and technical skiing in tricky avalanche terrain, making it a challenging route that’s best spread over a few days. Dennis and a group of editors and freelancers would spend the trip testing gear and taking photos for an upcoming magazine story.

Elisabeth: I’m Elisabeth Kwak-Hefferan and I actually started my career at Backpacker as an intern years ago, and then I was hired on as an assistant editor. I left that job to go freelance after several years, but I remained pretty close with everybody at Backpacker. I sometimes got the coveted invitation to go on an editor’s choice trip, which was always a really cool destination and a wonderful trip to do a gear shakedown.

Host: Editor's choice trips are meticulously planned and often with the help of guides, and the teams are made up of experienced backpackers, but even backpacker editors aren’t immune to the challenges of backcountry travel.

Elisabeth: Maren Horjus, who was one of the editors at the time, emailed me one day to see if I would be interested in joining for this winter edition of the Editor’s Choice trip. I am not a good downhill skier by any means, so I was worried that I wouldn’t be able to handle this trip, and Maren assured me that it would be fine and that this route was totally intermediate and all the hard stuff would be optional, so I reluctantly agreed to go on the Spearhead Traverse.

Host: It was May of 2017 when Dennis and Elizabeth and a handful of editors and photographers arrived in Whistler, BC. If you’ve ever backcountry skied in May, you know that the conditions can be, well, variable.

Dennis: And when we got there, everything that we had been told was absolutely true. It was this spectacular place. This traverse stays up high for miles on this ridge with incredible views and incredible scenery. It was also way harder than we had anticipated.

Elisabeth: The first sign of trouble for me was actually the day before we started the traverse, when we were meeting in our hotel room with our guides, and they were telling us about the conditions, which were much more challenging than anyone anticipated, and they started handing out.

All this extra gear like ice axes and crampons and ski crampons, which I honestly didn’t even know that was a thing. That first day was raining, if I remember right. Our traction was just terrible. Everybody was struggling, and at some point, I think everybody ended up just taking their skis off that first day, and we had to kind of just boot pack up for a while.

Dennis: We were really enjoying the experience and also working pretty hard with, again, heavy packs loaded with camping gear and food for four days.

Host: Before we get much further along, there’s something you should know about Dennis.

Dennis: I kinda like it when things are a little harder.

Host: Take it from someone who has hiked with Dennis: A little harder is putting it mildly. Maybe you have a hiking partner like this. He’s someone who seems to relish in suffering. Someone who seeks out Type 2 Fun just to push his limits and come away with a story, and someone who encourages those around to find their limits too.

Dennis: My role on these trips is trying to be a leader in the way in which we can say, "We’re the Backpacker crew. We can do anything." I like to be leading by example, and I’d always try to take the heavier gear and really embrace that. And the trips I sort of venture into Type 2 Fun for most people are where I get my Type 1 Fun, and I really enjoy it. And it’s not that I like suffering. It’s just that it’s usually like what you need to do to get to the good stuff. Maybe that’s the wrong way to say it, but I like to think that it’s a good way to lift spirits all around.

Host: To break them and to lift them again.

Dennis: Yes, exactly.

Elisabeth: I can tell you a story that I think is a really good little snapshot of who Dennis is. My very first Editor’s Choice trip, I was still an intern and we went to Great Sand Dunes National Park in Colorado, and that was a really beautiful trip and a lot of fun, but it was also really physically strenuous because we were hiking with really heavy packs on sand, just like up and down over sand dunes for miles and miles, and it was just wiping me out and I was super exhausted.

The last day of that trip, we finally came out of the sand dune part and we were back on dirt and we still had, I don’t know, let’s say 4 or 5 miles to go to get out, and a ranger came by in a pickup truck and was like, "Oh, hey, I can take your packs for you and leave them at the trailhead," which sounded amazing to me, but I was an intern, so I didn’t wanna speak first.

And Dennis said, "No, it’s okay. We’ll still carry them." I was like, "Okay, I guess I still have to wear my pack now."

Host: This is the attitude Dennis brought on every work trip and the Spearhead Traverse was no different. So the extra challenges created by late-season conditions should have been right up Dennis’s alley.

Dennis: And the second night of the trip, we were camped on this really spectacular point with views all around and this great little snowfield that night.

I was pretty calm. We had a good night’s sleep. I woke up in the morning pretty early, which I tend to do. I love to watch the sunrise, and I got up out of the tent. I kind of felt like I still had sleep in my eyes, like I couldn’t quite see. And I was like, "Oh, just rub my eyes and go get up and wake myself up."

I got out of the tent, and I looked at the horizon at the sunrise coming up, and I had comically perfect double vision, like everything was doubled. What was really startling about it is that I couldn’t tell the difference between what was the real thing and which was the doubled thing. I think that I would’ve expected the doubled thing to be a little less clear, like a sign or a tell that there’s the real one and there’s the double one. But they were perfectly equal, and I couldn’t tell the difference between them. And I thought, "That’s pretty weird." But I felt fine. So I just went about the morning, making coffee, getting ready for the day and figured it would just go away. Got our packs on, started our traverse. We’re traversing this long slope, long steep slope.

Elisabeth: I just distinctly remember we had to get up a slope that had a risk of avalanche on it, and it wasn’t a very big slope, but still the guide went up and I think intentionally set off part of it, but it turned into a situation where they said, "Just go really fast. Don’t linger in this fall path of a potential avalanche. Just keep going." So that was the first time and only time I’ve ever done that, but everybody made it, and we had to do tricky turns to get around corners and we had to follow a rope to get around a pretty steep little rocky section.

Dennis: I really struggled. I was already struggling. Like I said, it was hard skiing and then, this morning, when I tried to follow the ski tracks in front of me, the double vision made the ski tracks double tracks. So there were like four tracks and I was having a hard time getting in the right tracks and it just really surprised me how hard that became just doing a simple traverse that morning.

Host: For a few hours, Dennis kept word of his affliction quiet. By mid-morning, he mentioned it to the guide, fully aware there wasn’t much to be done about it

Dennis: Because I was not having any vital sign concerns, I thought, "Let’s just carry on and see how it goes," and later in the day, toward the end of the day, I told the Backpacker crew just so they were aware that I had something going on. I think I didn’t wanna make a big deal about it because I didn’t want it to be a big deal. If I kept pushing through the day and not making a big deal about it, it might just go away.

Elisabeth: He sort of casually mentioned that he was seeing double and he was very cool about it. But that’s a concerning symptom to be reporting. We were pretty far back in the backcountry at that point. I didn’t know exactly what could be going wrong, but seeing doubles suggested to me that it was some kind of brain-related thing.

We did discuss it a little bit amongst ourselves. "Wow, what’s going on with Dennis? Is this gonna be okay?" But he was keeping it together so well, and he was super calm that I don’t think anybody really realized how long of an ordeal he was in for.

Host: We’ll be right back.

Now let’s get back to the episode.

Dennis: We’re starting to think there was something going on that I really didn’t understand. I still felt good, but I had this same exact double vision. It had not changed at all since the morning. It was just very pronounced. And we were up high on the ridge. Remember, this is a ridge traverse, so we were high on the ridge the whole time.

Another great camp, another great view. I walked up to some rock outcropping where you could really see the horizon, and I had a cell phone, and I called a friend who’s a doctor. I asked him, "What do you think about this?"

Garth: I knew he was on a ski trip and he called me.

Host: This is Dennis’s friend who’s also a family medicine doc, Garth.

Garth: and he just checked in to say hi and kind of like we were just talking like we normally do. At one point I was like, "Aren’t you skiing?" And he was like, "Yeah." And I was like, "How’s it going?" And so it’s funny because he had this conversation with me for a few minutes and then it was like in the middle of it, he goes, "So I was calling you because I have a question." And I was like, "What’s up?" And he’s like, "So what does it mean if you start seeing double?"

I was like, "Wait, what, you’re seeing double, right? And when did it start?" So, I went into doctor mode. Did something happen to his eyes? He had no trauma, nothing else. I think that was kind of the end of the conversation, although I said, "You know, you need to take this very serious."

Host: The team was on track to make it to Whistler out of the backcountry the following day. So Dennis decided to carry on with the trip, and then things started to go.

Dennis: My hands and feet were starting to feel a little bit weird, but not nothing that I could really pin down. I went to sleep that night feeling concerned, but not overly concerned.

And then in the morning when I woke up on the fourth day, the feeling I had in my hands and feet was way more pronounced. It was this weird weakness. The double vision had not changed at all. I remember thinking I just need to get out.

Host: The final day required a few miles of tricky skiing, including a traverse across the top of a steep bowl, then descend through some trees before reaching Whistler Ski Resort.

Elisabeth: We continued on our day and he skied through some very difficult terrain and icy conditions. And the next time I even noticed that something was going on was in the middle of a transition. He didn’t quite get his binding right and as we were starting off on the next slope, he just lost a ski, and it just went sailing down.

Dennis: I realized in that moment that I didn’t have the function that I thought I had, and that I could have gone for a pretty big slide. The guide made a heroic trip down to the bottom of the slope and got the ski, and what could have been a pretty bad moment actually wasn’t.

Elisabeth: He was pretty down about that because that’s not the sort of mistake that a fully functioning Dennis Lewon would make. But he was definitely trying to deal with something. First of all, he couldn’t even see correctly. And also trying to deal with the rest of the adverse conditions that we were.

Host: His anxiety mounting, Dennis made another call to his doctor friend Garth.

Garth: When he called me, he was way worse; he was off-balance. He was falling. I was like, "Dude, you need to get checked out. Like something is progressing." Dennis is tough, man. He’s hardcore, and he’s super humble. He wouldn’t make a big deal out of it. We’ll go on these long trips and everybody’s dropping like flies and he’s just over there whistling and it’s pretty funny.

It’s like, he’s pretty tough. He’s just hard. At that point I think he was getting a little nervous, but it was like, "Well, he only had a little bit left to go." Most people would’ve flown up a white flag at this point and said, "I’m out." And that probably would’ve been the smart move, to be honest with you, because if he needed respiratory support in the backcountry, he would’ve been screwed.

Host: Finally, after a few hours of traversing and descending, the team reached Whistler Ski Resort and all that stood between Dennis and medical attention was an inbound ski run.

Dennis: I got to the resort runs and could ski down, and we had to do one long traverse through some trees to get to the right run to lead to the bottom, and I had that same problem staying in the ski tracks because of the double vision. I was really getting weak at this point and I was just really trying to hold it together. I went off the tracks into a tree well. I couldn’t get out.

I just could not get out of that tree well. I had to take off everything. I had to take off my pack, my skis, or just throw everything out, like pile it up and climb out. It took me a long time to climb out of that tree well, and when I did, I was like, "Okay, I’m going to find a clinic as soon as I get down."

The last run going down through Whistler, I was following somebody, and I don’t even know at this point if they were with us or not. It was just like on the run trying to get down, and I followed somebody into the moguls and I was going down the slope full of moguls. And as you can imagine, like double vision and moguls was like a minefield. It was just ridiculous and also made for a great finale for my day, but there’s nothing that going slow can’t fix. I got down to the base and went to the clinic in Whistler. It was a Saturday afternoon, did a check and basically said, "I don’t know what this is, but your vitals are okay. I think you should just go home to Boulder and see someone there."

Host: The group stayed in Whistler one more night, then they’d catch a flight to Seattle, then on to Denver. But even with the difficult skiing behind him, Dennis’s condition was only getting worse.

Dennis: By the time I got to Seattle, I could not walk very well.

It was hard to pick up my daypack, my little travel pack that I would take to the airport. and I couldn’t even pick up my duffle, the big duffle that had all the gear in it. I had to ask somebody else to pick it up, like I could not actually even put it in like the shuttle or on the counter at the airport and really was walking one step at a time.

I felt like I was 85 years old and losing the ability to walk and use my hands for anything. And I called that doctor friend again and how this weakness had progressed. And he was really torn.

Garth: We had a big conversation about, "Well dude, if you get in the airplane and you can’t breathe, you’re up shit creek."

Dennis: At that moment, I don’t know why, but in the airport in Seattle, it was the first time that I really got worried. I really thought, "Oh, this could be the rest of my life." I had lost function in most things. I need to do things. Between my vision and the weakness in my arms, hands, legs, feet. I was getting pretty close to not being able to do anything.

I really was worried at that point for the first time that I might not recover from this.

Host: Eventually Dennis made it back to Colorado without incident from the airport. He went straight to the hospital. At first, the doctors weren’t sure what was wrong until he saw a neurologist.

Garth: When he landed, he went straight to the hospital and then got admitted from that point, and they diagnosed him with Miller Fisher.

Host: Miller Fisher Syndrome is a rare nerve disease that tends to occur after a bacterial or a viral illness. Miller Fisher causes weakness in the eyes and limbs, and in worst cases, respiratory failure.

Dennis: It’s a rare form of Guillain-Barre Syndrome, which is itself relatively rare.

Host: Miller Fisher Syndrome only affects one or two people per million each year. It’s an autoimmune disease in which the immune system attacks the nerves. It usually starts with nerves in the face that affect eyesight and balance.

Dennis: The good news is most people do recover fully. And the bad news, it takes several months, up to six months.

Host: Meanwhile, the rest of the Backpacker team was returning to the office where the rest of us caught word of Dennis’s illness. I still remember pretty vividly our staff who had been on the trip coming back to the office physically and emotionally wrecked after the trip being so much harder than expected and demoralized about Dennis’s condition. Our deputy editor Casey entered the staff meeting with his feet so duct taped you could barely see skin. We didn’t know right away what the diagnosis was or any specifics, but I remember him using the word sad to describe what it was like to see Dennis barely able to walk through the airport, and when the meeting ended, Casey telling us to pray for our boss.

Dennis: That week, I spent getting treatment in the hospital in Boulder. I started feeling better within a couple weeks, and it took about a little more than four months for my vision to come back, which was the last thing that came back. Miller Fisher Syndrome starts with your vision as being the first symptom, and that’s the last thing that gets better. I did learn the worry with this is that you have respiratory problems, and it can be fatal if you can’t breathe. So it was really lucky that didn’t happen while I was on the Spearhead Traverse, because that would’ve been really hard to treat in that situation. Otherwise, it’s now several years later and no other lingering or residual effects from it.

This is actually something that when people talk about having an experience, it makes them intensely aware of how temporary things are and how important it is to focus on the present and to really value the things we have. Those are things that I think are easy to imagine are true and you know they’re true in your head, and then you sometimes might experience something that crystallizes them in a way that you just didn’t really appreciate before.

This is what happened when I experienced it. I really felt like the ability just to function, the health that I had taken for granted for years, for my whole life, was suddenly gone. I was actually starting to imagine a life without the health that I’d had for so long, and that’s a pretty powerful moment. I like to think that I do take something from that forward in terms of appreciating every day, and doing the things that I think are really important about staying healthy and hopefully having many more years before I can’t do stuff because I know that we all eventually lose the ability to do those things, do anything, and that’ll happen someday.

But it always felt really far off before, and now I am more aware of how it could happen anytime.

Host: This episode of Out Alive was produced by me, Louisa Albanese with scripting and editing by Zoe Gates. Scoring and Sound Design was by Jason Paton. Additional Production Assistance by Emma Veidt.

Thanks to Dennis Lewon, Elisabeth Kwak-Hefferan, and Dr. Garth Reer for sharing your stories with us. Thanks for listening to Out Alive, and if you have a backcountry survival story that you’re interested in sharing, you can email me at outalive@outsideinc.com.

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