Sep 17, 2021

In the Running

Diane Van Deren is one of the best ultra-runners in the world, and it all started with a seizure. In this short, Diane tells us how her disability gave rise to an extraordinary ability.

For Diane Van Deren, a charming mother of three, daily life is a struggle. But as soon as she steps outdoors, she's capable of amazing feats. She can run for days on end with no sleep, covering hundreds of miles in extreme conditions. Reporter Mark Phillips heads to Colorado to get to know Diane, and to try to figure out what makes her so unstoppable.

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UNIDENTIFIED ANNOUNCER: Listener-supported WNYC Studios.  

JAD ABUMRAD: Wait. Wait. You're listening (laughter)...  

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(SOUNDBITE OF MUSIC)  

LATIF NASSER: Oh, God. It's so hot. OK. I'm calling Lulu Miller.  

(SOUNDBITE OF CRICKETS CHIRPING)  

LULU MILLER: Hey.  

LATIF NASSER: Hello.  

LULU MILLER: How's it going?  

LATIF NASSER: I'm good. I just started running. It is crazy hot.  

LULU MILLER: Latif, is this our first run together?  

LATIF NASSER: This is our first run together, although it's, you know, apart together.  

LULU MILLER: Separated by, like, 2,000 miles.  

LATIF NASSER: Oh, my God. I'm already out of breath. Like, I haven't even been running...  

LULU MILLER: (Laughter).  

LATIF NASSER: ...For, like, five minutes.  

LULU MILLER: OK. Here we go.  

LATIF NASSER: Hi, I'm Latif Nasser.  

LULU MILLER: I'm Lulu Miller.  

LATIF NASSER AND LULU MILLER: This is RADIOLAB...  

LATIF NASSER: ...On the run.  

LULU MILLER: And we're 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.  

LATIF NASSER: Not here. But I'm doing it anyway.  

LULU MILLER: And so we thought we would just play this old piece, this lovely little piece, that is about running. But...  

LATIF NASSER: Rerun, as you - a real rerun.  

LULU MILLER: 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.  

LATIF NASSER: 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.  

(LAUGHTER)  

LULU MILLER: Perfect. All right. Well, it comes to us from producer Mark Phillips. And we'll just let Jad and Robert take it from here.  

LATIF NASSER: Enjoy.  

(SOUNDBITE OF MUSIC)  

ROBERT KRULWICH: Hello.  

JAD ABUMRAD: Hey, Mark.  

MARK PHILLIPS: Hello.  

JAD ABUMRAD: I'm Jad Abumrad 

ROBERT KRULWICH: And I'm Robert Krulwich 

JAD ABUMRAD: And this is RADIOLAB...  

ROBERT KRULWICH: The podcast.  

JAD ABUMRAD: ...The podcast. And today on the podcast, we have a story from reporter Mark Phillips, who's here with us.  

MARK PHILLIPS: Yes.  

JAD ABUMRAD: OK. So Mark, what are we hearing?  

MARK PHILLIPS: Well, I went to visit this incredible woman...  

(SOUNDBITE OF KNOCKING)  

MARK PHILLIPS: ...Named Diane Van Deren 

Hey.  

DIANE VAN DEREN: You found us. Come on in, man. Nice to meet you.  

MARK PHILLIPS: Nice to meet you. Yeah.  

JAD ABUMRAD: What was her last name?  

MARK PHILLIPS: Van Deren 

JAD ABUMRAD: Van Deren 

MARK PHILLIPS: Yeah. She lives just south of Denver in the foothills of the Rocky Mountains.  

It's a cool view of - makes Denver look tiny.  

DIANE VAN DEREN: Doesn't it?  

JAD ABUMRAD: So who is she? Why is she a person of note?  

MARK PHILLIPS: Well, she's one of the best ultra-runners in the world.  

DIANE VAN DEREN: ...Lead a very active lifestyle...  

JAD ABUMRAD: What's an ultra-runner?  

MARK PHILLIPS: The definition is just anything longer than a marathon. The majority of them that she runs are 100 miles.  

ROBERT KRULWICH: 100 - these are continuous miles?  

MARK PHILLIPS: Continuous. There's no sleeping.  

DIANE VAN DEREN: No sleep, 28 hours straight.  

JAD ABUMRAD: Wow.  

DIANE VAN DEREN: You know, I can tell you what pain is (laughter). 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.  

JAD ABUMRAD: How so?  

MARK PHILLIPS: 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.  

DIANE VAN DEREN: My first seizure - gosh, I do remember it.  

MARK PHILLIPS: It was 1988. Diane was 28 years old.  

DIANE VAN DEREN: I had two children, married. I was three weeks into my third pregnancy.  

MARK PHILLIPS: And one day...  

DIANE VAN DEREN: 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, that's - I had this funny sensation. It was quick, and it was brief. And then boom. That's the last thing I remember.  

MARK PHILLIPS: And next thing she knows, she's waking up in the hospital.  

DIANE VAN DEREN: 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 (ph).  

MARK PHILLIPS: And after some tests...  

DIANE VAN DEREN: They sent me off for an MRI.  

MARK PHILLIPS: He told her...  

DIANE VAN DEREN: What you have is epilepsy.  

(SOUNDBITE OF MUSIC)  

DIANE VAN DEREN: That was the first time I heard that word.  

JAD ABUMRAD: This seizure was just out of the blue?  

MARK PHILLIPS: Well, what the doctors eventually figured out is that when she was a baby, she had a fever.  

DIANE VAN DEREN: And I ended up throwing a grand mal seizure, which lasted almost an hour.  

JAD ABUMRAD: That's the...  

MARK PHILLIPS: That's the big one. Yeah. And they kind of put together that she probably damaged a part of her brain from that seizure.  

DIANE VAN DEREN: And 24 years later basically, boom. Seizures recurred.  

JAD ABUMRAD: And you said earlier that this somehow led to her running?  

MARK PHILLIPS: Yeah. OK. So after the seizure - the first seizure in the car - they started to happen more and more. But before the seizures would come on, she would have this warning sign.  

DIANE VAN DEREN: It's called an aura. I would have an aura. I would have a sensation before it did go into a seizure.  

ROBERT KRULWICH: People with migraines have that.  

MARK PHILLIPS: Exactly. Yeah.  

DIANE VAN DEREN: I would get really tingly all over my body. I'd feel kind of floaty - the premonition that something's about to happen.  

MARK PHILLIPS: She was in the shower. She would have to get out.  

DIANE VAN DEREN: OK. Where do I need to be? What do I need to do? And then...  

(SOUNDBITE OF MUSIC)  

DIANE VAN DEREN: ...It would happen. I had tried every medication that was available. Diets, nutrition - I mean, I tried it all.  

MARK PHILLIPS: Basically nothing was working...  

DIANE VAN DEREN: Nothing worked.  

MARK PHILLIPS: Until...  

DIANE VAN DEREN: 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.  

MARK PHILLIPS: She'd be eating dinner. She would feel a premonition, just drop her fork and knife.  

DIANE VAN DEREN: Throw those running shoes on. And I just showed you these mountains here by my house. I'd run to the Pike National Forest.  

MARK PHILLIPS: Here, let's just run in silence for a second...  

DIANE VAN DEREN: OK.  

MARK PHILLIPS: ...So we can get some sound of that.  

DIANE VAN DEREN: Yeah.  

MARK PHILLIPS: Her house is literally, you know, on the foothills of these mountains.  

DIANE VAN DEREN: Sometimes you can see a herd of elk out here. I've seen them out, lying 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're thinking, oh, my gosh. Diane's going to be off running in the middle of nowhere, have a seizure and we're not going know where she is, how to find her, what we're going to do.  

MARK PHILLIPS: But...  

DIANE VAN DEREN: I found that it worked.  

MARK PHILLIPS: She wasn't having seizures.  

JAD ABUMRAD: So when she would run, she'd have a premonition...  

DIANE VAN DEREN: 1, 2, 3, 4.  

1, 2, 3, 4.  

JAD ABUMRAD: ...But no actual seizure at the end?  

MARK PHILLIPS: Yeah.  

DIANE VAN DEREN: 1, 2, 3, 4.  

1, 2, 3...  

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.  

MARK PHILLIPS: She did this for years. She'd feel this aura, and then she'd just run - literally outrunning the seizures. And at first, it'd 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.  

DIANE VAN DEREN: 1, 2, 3, 4.  

1, 2, 3...  

MARK PHILLIPS: But eventually...  

DIANE VAN DEREN: The seizures basically just started overcoming.  

MARK PHILLIPS: They caught up with her.  

DIANE VAN DEREN: I was having three to five seizures a week. I wasn't getting those premonitions like I did in the beginning.  

MARK PHILLIPS: It got to the point where she didn't have enough time to get her running shoes on.  

DIANE VAN DEREN: I didn't have that long of a premonition. It was like, boom, seizure. So I could tell that part of my brain was actually getting weaker. And I knew at that point time I really was at more of a risk of dying from a seizure...  

MARK PHILLIPS: You could die from a seizure?  

DIANE VAN DEREN: 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. You know, 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.  

MARK PHILLIPS: And you know, she talked with her doctors, and they said, well, there's a chance you can 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.  

DIANE VAN DEREN: To see if it was operable.  

MARK PHILLIPS: Which meant she had to go the hospital and actually have a seizure in front of them.  

DIANE VAN DEREN: I had to have 64 electrodes basically glued onto my scalp. And I had this cord out of each one of these electrodes that was in my head. It was tethered into a TV set.  

MARK PHILLIPS: She was hooked up to an EEG machine. And...  

DIANE VAN DEREN: I had a camera on me 24/7. And...  

MARK PHILLIPS: There's footage of this. She showed it to me.  

DIANE VAN DEREN: I remember laying there in the bed, saying I can't run. I need to let it happen.  

MARK PHILLIPS: What you see on the screen is, she starts to jerk. She's clenched. She's shaking. You hear the bad sort of rattling. And she bites her tongue so hard that, you know, there's just this pool of blood below her face. She's choking on her blood. It's...  

UNIDENTIFIED PERSON: She's biting her tongue real bad.  

MARK PHILLIPS: It's horrifying.  

DIANE VAN DEREN: And then as I came out of it, honest to God, I felt like I'd been run over by a truck. I was gurgling still on some blood that was in my throat, and I had a massive headache.  

MARK PHILLIPS: But the doctors are standing right next to her, cheering.  

DIANE VAN DEREN: All right. All right. We got it. We got it.  

MARK PHILLIPS: Because they actually found that the seizures were coming from one spot in the brain.  

DIANE VAN DEREN: When they said, well, what do you think? We found the spot. You could be a surgery candidate.  

MARK PHILLIPS: I mean, you know, it's a big risk.  

DIANE VAN DEREN: Yeah.  

MARK PHILLIPS: 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.  

(LAUGHTER)  

DIANE VAN DEREN: Let's see here. Well, in all honesty, it was hands-down. I was like, let's go.  

(SOUNDBITE OF MUSIC)  

DIANE VAN DEREN: So they sawed the side of my right head open. They just literally just sawed it open. And so there was my brain exposed while I was on the table.  

MARK PHILLIPS: 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, spatial reasoning and temporal reasoning, time.  

DIANE VAN DEREN: And they had to, you know, decide, OK, 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.  

JAD ABUMRAD: That's big.  

MARK PHILLIPS: Yeah. It's not insignificant.  

JAD ABUMRAD: Kiwis are, like, the size of golf balls, right?  

MARK PHILLIPS: Bigger.  

JAD ABUMRAD: Wow.  

DIANE VAN DEREN: When I came home, I just had horrific headaches and this extreme pain. I mean, 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?  

MARK PHILLIPS: And as the days went on, they waited and waited and waited.  

DIANE VAN DEREN: And I wasn't having seizures.  

JAD ABUMRAD: None at all?  

MARK PHILLIPS: 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? I mean - yeah.  

DIANE VAN DEREN: How did I get into this? It was interesting. I did a 50-mile race. I won that. Then I thought, OK...  

JAD ABUMRAD: Wait. What?  

MARK PHILLIPS: 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.  

DIANE VAN DEREN: 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'm not having seizures. OK. I'm going to run a 50. I won that. And then I signed up for my first hundred-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.  

MARK PHILLIPS: At the same time, back home - when did you start to notice, you know, that things were different, working differently in your brain?  

(SOUNDBITE OF MUSIC)  

DIANE VAN DEREN: I didn't. My family started noticing things. Moms forgetting, you know, what time my appointments were. We're late to school. Mom's not here to pick me up.  

JAD ABUMRAD: So she was having short-term memory loss?  

MARK PHILLIPS: Yeah, a lot.  

DIANE VAN DEREN: You know, 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?  

(SOUNDBITE OF MUSIC)  

MARK PHILLIPS: 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.  

JAD ABUMRAD: Yeah, go.  

MARK PHILLIPS: First overall in the 24 hours in Frisco trial run, first for women's in the Dances With the Dirt 50-miler in Hell, Mich.  

JAD ABUMRAD: Dances With the Dirt in Hell, Mich.  

MARK PHILLIPS: First in women's in the Canadian Death Race 78-miler in Edmonton, Canada.  

JAD ABUMRAD: The Canadian Death Race?  

MARK PHILLIPS: Yeah.  

DIANE VAN DEREN: The Yukon Arctic Ultra 300-miler was -48 degrees when we began the event. The shoes literally froze on my feet. And only two of us finished. I ran the first hundred miles with no water. Did 430 miles in the Yukon pulling a sled.  

MARK PHILLIPS: During which time she'd sleep only about an hour a night.  

DIANE VAN DEREN: For 10 days.  

ROBERT KRULWICH: Wow. Really.  

MARK PHILLIPS: The crazy thing is that through all of this, she can't read a map.  

JAD ABUMRAD: What? What do you mean?  

MARK PHILLIPS: 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.  

DIANE VAN DEREN: It's, like, just a bunch of information on a piece of paper. All those lines, all those squigglies 

MARK PHILLIPS: Just noise.  

JAD ABUMRAD: So then how did she navigate through a race?  

DIANE VAN DEREN: 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...  

MARK PHILLIPS: Is it left? Is it right?  

DIANE VAN DEREN: I'll pick a way. I'll drop a ribbon.  

MARK PHILLIPS: 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.  

DIANE VAN DEREN: 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.  

ROBERT KRULWICH: Did you win that year that you were lost for two hours?  

DIANE VAN DEREN: Yeah.  

MARK PHILLIPS: 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 ultrarunner? Do you understand the question?  

DIANE VAN DEREN: I do.  

MARK PHILLIPS: And she says no.  

DIANE VAN DEREN: I think having a brain injury puts me at a disadvantage. I - 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.  

MARK PHILLIPS: When the doctors removed that part of her brain, they took out a basic awareness of time passing.  

DIANE VAN DEREN: 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...  

MARK PHILLIPS: I can't look back. I can't think, you know, how long I've been running because I don't know.  

DIANE VAN DEREN: I stay in the moment.  

MARK PHILLIPS: Because of that, she doesn't know how tired she should feel.  

JAD ABUMRAD: Huh.  

MARK PHILLIPS: 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 just hearing your footsteps, and that's it.  

DIANE VAN DEREN: 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.  

MARK PHILLIPS: So count out the beat for me.  

DIANE VAN DEREN: Two, three, four. One - three, four. One, two, three, four. One, two. You're a drummer. You hear it?  

MARK PHILLIPS: Yeah.  

DIANE VAN DEREN: One, two, three, four. One, two, three, four. One, two, three, four. And even with my breath - in two, out two. This is all breathing and feet. They all go together. And if you're smooth - you know, you're smooth in your gait, you're smooth in your run.  

MARK PHILLIPS: So how does the breath and the feet interact?  

DIANE VAN DEREN: I just know two breaths in, two breaths out. Match my feet. See the rhythm?  

MARK PHILLIPS: Yeah.  

DIANE VAN DEREN: 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.  

JAD ABUMRAD: Thanks, Mark.  

MARK PHILLIPS: Yeah. No problem.  

JAD ABUMRAD: Reporter Mark Phillips.  

(SOUNDBITE OF FOOTSTEPS)  

JAD ABUMRAD: 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 

ROBERT KRULWICH: And I'm Robert Krulwich 

JAD ABUMRAD: Thanks for listening. 

 

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