Diane Van Deren has climbed the highest peak in South America, Argentina’s 22,834-foot Aconcagua. She’s run a who’s who of endurance racing’s top events, including Colorado’s Leadville 100 and Hardrock 100, the latter, with 33,000 feet of total climbing, considered by many to be the hardest 100 miler around (she’s done that one six times). In 2008 she won the 300-mile version of the Yukon Arctic Ultra 300, vowed at the finish she was done with racing in temperatures of 50 below zero, then won the 430-mile version of the same race the following year. Before that she played five years on the women’s pro tennis tour with the likes of Chris Everett, Martina Navratilova and Tracy Austin.
Yet those challenges pale in comparison to Van Deren’s ultimate epic, which began when she was a toddler.
“I was 16 months old when my mom came into my room one day and found me sick, gasping,” Van Deren, who is now 51, told a gathering Tuesday night at Kings Baracade in downtown Raleigh. Van Deren is one of The North Face’s elite sponsored athletes, and she was in town speaking as part of its Never Stop Exploring Speaker Series.
Her mom called 911 and she was rushed to the hospital, where her temperature began to take off. She suffered a seizure that lasted an hour and for three days was packed in ice. Finally, her temperature broke, she was put on phenobarbital for two months, and was fine. Or at least she appeared to be.
As she grew older and her family moved to the Denver suburb of Littleton, Van Deren discovered a love of sports. “Anything with a ball, a bat or a mitt I was attracted to,” she said. In third grade she tucked her hair up under her baseball cap, called herself “Dan” and played catcher in a boy’s-only baseball league. She would go on to excel at a variety of sports, including basketball and volleyball.
Early on, though, she noticed she wasn’t like the other girls — they didn’t share her consuming passion for sports. Why is that? she asked her dad one night at the dinner table.
“He looked me in the eye,” says Van Deren, “and said, ‘That’s your gift and you must use it to your full potential.’”
As a 17-year-old she left Littleton’s Heritage High School four months early to join the women’s pro tennis tour. For five years she funneled her athletic energy into the draining pro tour, a career that ended abruptly during a tour stop in Germany. “One night in Frankfurt I got up at 3 a.m., went to the airport, put my credit card on the counter. I’m done.”
It was about that time that Van Deren began having what she calls “deja vu moments. They’re hard to describe,” she says. “They were these funny sensations that I thought everyone had.” She mentioned the funny sensations to her future husband, Scott. His response: “Uh, I don’t know what you’re talking about.”
It wasn’t until they had their third child that they discovered the source of those funny sensations.
She was out on a house-hunting expedition with her mom and a Realtor when suddenly her body slammed into the back of her car seat and her eyes rolled back. They went to the hospital, she was checked out, doctors couldn’t find anything, they decided it was a fluke. Two months later, after her son Matthew had been born, it happened again.
A friend referred her to noted Denver-area neurologist Dr. Mark Spitz (“not the swimmer,” she clarifies), who ordered an MRI. Three days later she and Scott were in Spitz office looking at pictures of her brain, most notably one that showed a dark spot on the temporal lobe.
“What’s that?” Van Deren asked.
“That’s scarring from when you had your seizure at 16 months,” Spitz said.
“What’s that mean?” Van Deren wanted to know.
“Your brain’s been weakened,” answered Spitz. “You have epilepsy.”
“My first reaction,” she told the Kings crowd, “was to thank God for all the experiences that I had been able to have. And being an athlete, being competitive, do you know what my second thought was? OK, so how am I going to beat this?”
Beating it did not prove quick or easy. She tried different drug regimens; the seizures only became more frequent. She had to think about everything she did. When she went skiing she would wrap her arms around the back of the chairlift: “I didn’t want to have a seizure and pitch forward out of the chair.” She didn’t use the stirrups when she went horseback riding: “I didn’t want to get dragged along behind the horse.” When she took her kids to the pool, she’d stop by the lifeguard station to check in. “I’d say, ‘Look, my kids are fine. It’s me you need to keep an eye on.
“For 10 years, my life was, ‘What if? What if? What if?’”
Finally, when she had run through all the known drug treatments, her doctor suggested a new type of brain surgery being used on people with epilepsy. Basically, her doctor explained, they would locate the part of her brain where the seizures were originating — the focus — and remove it. Before the doctor could finish explaining the procedure, Van Deren was on board. “Let’s do it,” I said. “Let’s do it now.”
Before that could happen, they had to locate the source. That involved “screwing” 64 electrodes into Van Deren’s head, then waiting for her to have a seizure. Two days passed with no seizures. On day three, Van Deren had had enough. She knew that sleep deprivation and stress can trigger seizures, so she stayed up all night, then found a stationary recumbent bike, had it moved to her room, and pedaled for hour after hour. Eventually, she got off the bike, dripping with sweat and collapsed onto her bed. Before long, she felt that old familiar deja vu feeling coming on …
Van Deren showed a mercifully short video clip of the resulting seizure. In it, you see Van Deren shaking violently in her bed. “The nurses were screaming, I was kicking stuff over, there was blood dripping out of my mouth,” Van Deren said. “Having a seizure like that was more draining than doing 430 miles in the arctic. But that was my last seizure.” That was in 1997.
There were side effects from the surgery. Van Deren says her peripheral vision isn’t as good as it was before, she suffers from short-term memory loss, and she emerged with lousy organizational skills. “I’ll start with one, then I’ll go to four, then three, then five … .” All of this, she says, tired her brain and zapped her energy. But not long after her surgery, she discovered something that cleared her brain, freed it completely, left it blank and fresh.
“At first, I’d go and run for an hour or so,” says Van Deren. “But then I started going for three, four, five, seven hours. I felt great.” Running proved her salvation — and her second career as an athlete.
Running as a means for staying sane helps explain her races, which even to an audience of avid runners must have seemed insane. Races such as Leadville and Hardrock, which keep her moving for nearly two days straight. Or hauling a 60-pound sled 300 miles through the arctic winter in a race that saw temperatures that eliminated three-quarters of the field within the first two hours, that saw one contestant suffer kidney failure, one pulmonary edema and scores lose fingers and toes to frostbite (not to mention the “moose waiver” contestants had so sign absolving race officials of liability should they get kicked by a moose). So beat up was she after the 430-mile Yukon Ultra that when a fellow racer who had dropped out (only two finished) saw her sprawled across her hotel bed after finishing all he could say was, “I am so glad I didn’t finish.”
To her, that’s a small price for the relief running offers. Besides, she told the crowd, there are other perks to endurance racing. She shows a slide of her during the Yukon race, a close-up in which her balaclava is packed with food. The image conjures images of a horse with a feedbag.
“I get to eat 10,000 calories a day,” she beams. “Isn’t that great!”
* * *
* About the photo: Not only did I get my picture taken with Diane, I got to run four miles with her at Umstead State Park (along with Chuck Millsaps of Great Outdoor Provision Co. and Todd Hancock of The North Face). This was at 10 Tuesday morning; already, she had gotten up at 4 a.m. (“I’m good with about six hours of sleep”), gotten to the gym by 5 and spent two hours on the elliptical trainer and another hour on the stationary bike (she was winding down training for un upcoming 60-mile race in the Andes). During our run, we had a small-world revelation: we both grew up in suburbs of Denver (Diane in Littleton, me across town in Aurora) and went to high schools in the same league. Later, doing the math with our ages — she’s 51, I’m 55 — it occurred to me that Van Deren might have played tennis against my high school girlfriend, who was a year younger than me and anchored our tennis team. BTW, Diane was a great running partner, keeping a civilian pace and being every bit as interested in hearing about our latest 5K as we were in hearing how she got run off a cliff in something called the Canadian Death Race. Great story, you see, she was 10 miles into the race when … well, she tells it much better than I could. Watch here.
4 thoughts on “Diane Van Deren : An ultra athlete’s ultimate challenge”
Great article, Joe an such an amazing story! Thanks for tackling this story in depth.
Hi diane, i just find you on this side when i was locking for robin and the boys. i ‘ am so glad that you are doing so well. I would like to know how The kids are doing. I was your au pair when i was 21 ….it was i belive 1995. Would be great to hear from you…