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In the Running

2021/9/17
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Diane Van Deren, a world-class ultra-runner, discusses how her seizures led to her extraordinary running abilities.

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While you still can. Ba-da-ba-ba-ba. At participating McDonald's for a limited time while supplies last. Listener supported. WNYC Studios. Wait, you're listening? Okay. Alright. Alright. You're listening to Radiolab. Radiolab. From WNYC. See? Yep. Oh, God. It's so hot.

Okay, I'm calling Lulu Miller. - Hey! - Hello. - How's it going? - I'm good, I just started running. It is crazy hot. - Latif, is this our first run together? - This is our first run together, although it's, you know, apart together. - It's separated by like 2,000 miles. - Oh my God, I'm already out of breath. Like I haven't even been running for like five minutes.

- Hi, I'm Luthif Master. - I'm Lulu Miller. This is Radio Lab. - On the run. - On the run, we're out for a little jog. It's fall season, it's getting to be the nice running weather in some places, at least here. - Not here, but I'm doing it anyway. - And so we thought we would just play this old piece, this lovely little piece that is about running.

Rerun, as you will. Real rerun. Rerun, run. Yeah, but it's also like... Well, A, I love Radiolab doing a sports story. I just do. But it's also about... It kind of offers some keys on how to...

a surprising key on how to unlock endurance for anyone. Yeah, it's a very beautiful story. As I run and still do not comprehend why people would willingly voluntarily do this, this story helped me understand that at least a little bit. Perfect. All right. Well, it comes to us from producer Mark Phillips, and we'll just let Jad and Robert take it from here. Enjoy.

Hello. Hey, Mark. Hello. I'm Jad Abumrad. I'm Robert Kralowicz. And this is Radiolab. The podcast. The podcast. And today on the podcast, we have a story from reporter Mark Phillips, who's here with us. Yes. Okay, so Mark, what are we hearing? Well, I went to visit this incredible woman named Diane Van Deren. Hey. You found his car?

Nice to meet you. What was her last name? Van Deren. Van Deren. Yeah. She lives just south of Denver in the foothills of the Rocky Mountains. Oh, it's a cool view. It makes Denver look tiny. Doesn't it? So who is she? Why is she a person of note? Well, she's one of the...

best ultra runners in the world. What's an ultra runner? The definition is just anything longer than a marathon. The majority of them that she runs are 100 miles. This is continuous miles? Continuous.

There's no sleeping? No sleep, 28 hours straight. Wow. I can tell you what pain is. I can tell you what pain is. And I was fortunate. I got runner-up to Lance Armstrong for Outdoor Person of the Year years ago. And I kind of think Lance and I have stories that are very parallel. How so? Well, it's interesting. She was always an athlete. She actually played professional tennis for a while. She came to running later in life. And oddly enough, her running career started...

with a seizure. My first seizure, gosh, I do remember it. It was 1988. Diane was 28 years old. I had two children, married. I was three weeks into my third pregnancy. And one day... I was with my mom. We were in the car. And as we were driving around, I remember reaching for, like, the glove compartment box my mom had asked for me to get some gum out. And I remember as I was reaching for that, I had this funny sensation. It was quick and it was brief. And then, boom. Boom.

That's the last thing I remember. And next thing she knows, she's waking up in the hospital. I was confused. I didn't know where I was, what I was doing, what happened. And eventually, I ended up getting with a doctor, Dr. Spitz. And after some tests? He sent me off for an MRI. He told her? What you have is epilepsy. That was the first time I heard that word.

The seizure was just out of the blue? Well, what the doctors eventually figured out is that when she was a baby, she had a fever. And they ended up throwing a grand mal seizure, which lasted almost an hour. That's the big one, yeah. And they kind of put together that she probably damaged a part of her brain from that seizure. And 24 years later, basically, boom, seizures reoccurred.

And you said earlier that this somehow led to her running? Yeah. Okay. So after the seizure, the first seizure in the car, it started to happen more and more. But before the seizures would come on, she would have this warning sign. It's called an aura. I would have an aura. I would have a sensation before it did go into a seizure. People with migraines have that. Exactly. Yeah. I would get really tingly all over my body. I'd feel kind of floaty, the premonition that something's about to happen.

If she was in the shower, she would have to get out. Okay, where do I need to be? What do I need to do? And then...

It would happen. I tried every medication that was available, diets, nutrition. I mean, I tried it all. Basically nothing was working. Nothing worked. Until... I found the only way I could break the cycle of a seizure for me, whenever I had that premonition a seizure was coming on, I'd have my running shoes by the front door. She'd be eating dinner. She would feel a premonition, just drop her fork and knife. Throw those running shoes on, and I just showed you these mountains here by my house. I'd run to the Pikes National Forest.

Yeah, let's just run in silence for a second. Okay. So we can get some sound of that. Yeah. Her house is literally, you know, on the foothills of these mountains. Sometimes we can see a herd of elk out here. I've seen a mountain lion out here. A lot of deer. Whenever I had a seizure coming on, I'd go run. Well, of course, my family, my mom, everybody was panicking because they were thinking, oh my gosh, Diane's going to be off running in the middle of nowhere, have a seizure, and we're not going to know where she is, how to find her, what we're going to do.

But I found that it worked. She wasn't having seizures. So when she would run, she'd have a premonition but no actual seizure at the end? Yeah. When I ran from the seizures and I'd run to the forest, I would just feel me just getting more relaxed. My heart wouldn't be pounding. Calmness set in. And that is where my love for running began. She did this for years. She'd feel this aura and then she'd just run.

literally outrunning the seizures. And at first it would just be an hour or so, but then she was going for longer and longer, two hours, five hours, six hours, and it sort of worked for a while. But eventually... The seizures basically just started overcoming. They caught up with her. I was having three to five seizures a week. I wasn't getting those premonitions like I did in the beginning. It got to the point where she didn't have enough time to get her running shoes on. I didn't have that long of a...

It was like, boom, seizure. So I could tell that part of my brain was actually getting weaker. And I knew at that point in time I really was at more of a risk of dying from a seizure. You could die from a seizure? Happens all the time. People die of seizures all the time. For example, a friend of mine, his wife, she went up to go take a bath, had a seizure, went up later, and he found her dead in the tub. My kids, I always had to tell them, hey, mom's taking a bath. Come check on me.

My children at a very young age had to learn how to drive a car because what if mom had a seizure while she was driving? I, as a parent, as a wife, as a mom of three small children, I was running out of options.

And, you know, she talked with her doctors and they said, well, there's a chance you could have a surgery that would fix this. If the seizures are coming from just one discrete part of the brain, they can cut that part of the brain out. But first they have to figure out if it's that type of seizure and where it's coming from. To see if it was operable. Which meant she had to go to the hospital and actually have a seizure in front of them. I had to have 64 electrodes, basically, in my brain.

glued onto my scalp, and then I had this cord out of each one of these electrodes that was in my head. It was tethered into a TV set. She was hooked up to an EEG machine. I had a camera on me 24-7. There's footage of this. She showed it to me. I remember laying there in the bed saying, I can't run. I need to let it happen.

What you see on the screen is she starts to jerk, she's clenched, she's shaking, you hear the bed sort of rattling, and she bites her tongue so hard that there's just this pool of blood below her face. She's choking on her blood. It's horrifying.

But the doctors are standing right next to her, cheering. Because they actually found that the seizures were coming from one spot in the brain. I mean, you know,

You know, it's a big risk. It's not like just taking a pill. I mean, you're cutting out a chunk of your brain. Was it a tough decision or was it just sort of a no-brainer? No pun intended. Let's see here. Well, in all honesty, it was hands down. I was like, let's go.

Thank you.

At Hotels.com, we know some travelers crave sand between their toes. Others want to be poolside with a drink on the way. And more often than not, those two people end up in a relationship. With the Hotels.com app, compare properties side by side across amenities like pool and ocean view.

Compromise isn't so bad when you're holding a Mai Tai by a pool with an ocean view, agreeing that, yeah, this is better than finding sand in awkward places for three days. Book now in the Hotels.com app and find your perfect somewhere.

I'm Maria Konnikova. And I'm Nate Silver. And our new podcast, Risky Business, is a show about making better decisions. We're both journalists who moonlight as poker players, and that's the lens we're going to use to approach this entire show. We're going to be discussing everything from high-stakes poker to personal questions. Like whether I should call a plumber or fix my shower myself. And of course, we'll be talking about the election, too. Listen to Risky Business wherever you get your podcasts. So they saw the side of my right head open.

I just literally just sawed it open. And so there was my brain exposed while I was on the table. So the doctors huddle around and they look in and they can actually see this gray discolored spot from all the seizure activity. It's on the back right side. It's a part of the brain called the temporal lobe, which is the part of the brain that seems to be involved in memory issues.

spatial reasoning and temporal reasoning, time. And they had to decide, okay, well, how much of her brain are we going to take out? And they go back and forth. I mean, obviously, the more brain that they take out, the more consequence, the more side effects. Well, they ended up cutting out probably the size of a kiwi out of my right temporal lobe. That's big. Yeah, it's not insignificant. Kiwis are like the size of golf balls, right? Bigger.

When I came home, I just had horrific headaches and this extreme pain. I just remember just holding my head, just trying to hold my head together. It just hurt so bad. And seizure-wise, they didn't know. So everybody was kind of on pins and needles. Did it work? Did it not work? And as the days went on, they waited and waited and waited. And I wasn't having seizures. None at all? No. She's not had a seizure since the night before the surgery.

So you didn't really get into the competitive ultra running until after the surgery. How did that come about? How did I get into this? It was interesting. I did a 50-mile race. I won that. Wait, here's where things kind of get interesting. After a year or so of no seizures, Diane decided to enter this race, a 50-miler, on a whim. I just read about it in a magazine. You know, I love to run, and I thought...

Oh, man, I have this new outlook on life. I don't have seizures. Okay, I'm going to run a 50. I won that, and then I signed up for my first 100-mile race. Of course, everybody was like, oh, my gosh, a race in the Bighorn Mountains of all places. Did well. I ended up placing. At the same time, back home. When did you start to notice that things were working differently in your brain? I didn't.

My family started noticing things. Mom's forgetting, you know, what time my appointments were. We're late to school. Mom's not here to pick me up. So she was having short-term memory loss. Yeah, a lot. Meeting somebody in the morning, later on that afternoon, maybe I see them again and I have no idea who they were. They'll have to say, hey, remember I saw you? Those kind of things. But let's see what was I saying. Meanwhile...

First overall in the Alfred Packer 50 miler. Second overall in the Bear 100 miler. First overall in the Tahoe Rim 100 miler. I could keep going. Yeah, go. First overall in the 24 hours in Frisco trial run. First...

for women's in the Dances with the Dirt 50-miler in Hell, Michigan. Dances with the Dirt in Hell, Michigan. First in women's in the Canadian Death Race 78-miler in Edmonton, Canada. The Canadian Death Race? Yeah. The Yukon Arctic Ultra 300-miler was minus 48 degrees when we began the event. The shoes literally froze on my feet and only two of us finished. I ran the first 100 miles with no water. I did 430 miles in the Yukon pulling a sled. During which time she'd sleep only about an hour a night. For 10 days.

Really? The crazy thing is that through all of this, she can't read a map. What? What do you mean? Well, one of the main functions of that kiwi-sized part of her brain that the doctors took out, as I said, was spatial reasoning. And so after the surgery, maps just look weird to her. It's like just a bunch of information on a piece of paper. All those lines, all those squigglies. Just noise. So then how does she navigate through a race? Well, I take a pink ribbon with me.

So when I'm out in the middle of nowhere and I have three ways to hit a trail and I'm not quite sure which way to go. Is it left? Is it right? I'll pick a way. I'll drop a ribbon. And after a couple hours, if she feels like she's not on a trail anymore, she just goes back until she gets to the pink ribbon and then she picks the other way. On the Yukon, there was a time where, gosh, I was lost for two hours. I was out in the middle of nowhere all alone, huge heavy winds, just ripping across the Yukon River. Did you win that year that you were lost for two hours? Yeah.

mostly Diane finds these sort of workarounds for what she lost in the surgery. But the fact is she only became this amazing runner after the surgery. So while we were talking, I just couldn't help but wonder, well, I mean, I'm, I wonder like, do you think did having part of your brain removed make you an ultra runner? And do you understand the question? I do. Um, and she says, no, I think having a brain injury puts me at a disadvantage. Um,

Let's see, what was I saying? But I think for me, the one advantage, if I had to say I have an advantage over the other athletes, would be time. Time. I can really get lost in time. When the doctors removed that part of her brain, they took out a basic awareness of time passing. Time's hard. So when I'm on the Yukon, I'm going for 10 days. I kind of forget how many days I've been out there.

You know, some of the racers are saying, "Oh, I've been out here six days. I'm exhausted." For me, I can't look back. I can't think, you know, how long I've been running because I don't know. I stay in the moment. Because of that, she doesn't know how tired she should feel. Huh. Think about it. If you don't know where you are in time, you don't know how much further you have to go, how far you've been. You're just running. You're just hearing your footsteps.

and that's it. I get a rhythm in my mind, that's what I want to hear in my feet. I go by rhythm. I know the sound that my feet, about what an eight minute pace would be, how my feet would sound. So count out the beat for me. You're a drummer. You hear it? Yeah. And even with my breath, in, two, out. It's all breathing and feet. They all go together. And if you're smooth...

You're smoothing your gait, smoothing your run. So how does the breath and the feet interact? I just know two breaths in, two breaths out. Match my feet. See the rhythm? Yeah. If that's all I have to hear for 28 hours, that's what I want. That's music. That's my music. There's nothing else in my mind but my feet and my breathing. That's the music to an athlete's ear. That's the flow.

Thanks, Mark. Yeah, no problem. Reporter Mark Phillips. For more information on Diane Van Deren, you can go to our website, radiolab.org. We've got some links there. And I guess that's it. I'm Jad Abumrad. And I'm Robert Krulwich. Thanks for listening. Hi, this is Rosie, and I'm a Radiolab listener from Seattle, Washington.

Radiolab is supported in part by the Alfred P. Sloan Foundation, enhancing public understanding of science and technology in the modern world. More information about Sloan at www.sloan.org. Thanks, guys. Bye.