Diane Van Deren goes the distance
It's not easy to reach ultramarathoner Diane Van Deren on the phone. You might get her husband, who will nonchalantly explain, "Sorry, she's out pulling a sled across the Arctic Circle." Or you'll reach her voicemail, just missing Van Deren as she heads out for her daily 25-mile jog through the majestic mountains of Sedalia, Colo. Or you might not get through at all, because who has cell reception while competing in something called the Canadian Death Race?
Van Deren, a tanned, lean 5-foot-9, 135-pound running phenom, has been a star athlete throughout her 51 years. As a young girl, she tucked her ponytail into her helmet and played on a boys' Little League baseball team. Her teenage reign as Colorado state champion in both tennis and golf was followed by a high school career as one of the nation's top basketball players. College tennis followed. And while Van Deren always ran for training purposes, she didn't enter her first marathon until the age of 22, on a whim ... and won.
The seizures, however, didn't begin until she was 28. Riding in a car with her mother, newly pregnant with her third child, Van Deren lost consciousness. In the ER, doctors were flummoxed that a nonsmoking, nondrinking athlete like her would seize. But over the next decade, the horrific neurological events continued, sometimes occurring up to five times per week. An MRI revealed scar tissue in Van Deren's right temporal lobe, remnants of a prior seizure. Not until age 31 was she officially diagnosed with epilepsy, a disorder that affects less than 1 percent of the population.
Usually, when people develop an aura [a tingling sensation that often precedes a seizure], they'll get a relaxed feeling, lie down and the seizure starts. But if I ran, I could prevent it. Sometimes I'd run for an hour, sometimes three or four. It was through my fear of the seizures that I found my gift for ultrarunning.Diane Van Deren
Until that point, nothing -- not hardcore medication or dietary changes -- could control her debilitating seizures. Except the act of running. "I found I could break the cycle of the seizure erupting through running," she explained. "Usually, when people develop an aura [a tingling sensation that often precedes a seizure], they'll get a relaxed feeling, lie down and the seizure starts. But if I ran, I could prevent it. Sometimes I'd run for an hour, sometimes three or four. It was through my fear of the seizures that I found my gift for ultrarunning."
But nobody -- not even a seemingly superhuman athlete like Van Deren -- can run forever. And the epilepsy began taking over her life: She'd walk three miles to and from the grocery store, kids in tow, rather than drive, and would wrap her arms around the chairlift while skiing. "My husband didn't sleep for years; he was always checking on me to see if I had stopped breathing," she said.
In 1997, at age 37, Van Deren underwent a six-hour surgery to remove a kiwi-sized portion of her hippocampus, the region of the brain responsible for short-term memory and the processing of emotional information -- and the area where her epilepsy originated. After years of seizures, the affected tissue was a dull grey in contrast to the healthy pink of the rest of her brain. There were risks from having her skull sawed open: of anesthesia complications, of a stroke. But they were worth it for Van Deren. "I had a huge fear of dying from a seizure," she explained.
Indeed, her type of seizures carry a 1 percent chance of death every year, said Van Deren's neurosurgeon, Mark Spitz, professor in the department of neurology at the University of Colorado and director of its Comprehensive Epilepsy Center. "The brain is connected to the heart, so a seizure can trigger a fatal heart rhythm. That's how runner Florence Griffith Joyner died -- as the result of a seizure," he said. Spitz said the risks of epilepsy outweighed the risks of surgery.
"Even though there was no guarantee the seizures wouldn't return, I thought, 'I'm gonna beat this,' " Van Deren said. "I'm trained as a pro athlete -- that's how we think."
Two weeks post-op, Van Deren ran 10 miles. There was no pain, and there was no seizure that day.
In fact, Van Deren hasn't had a seizure since the lobectomy. More fascinating is an unforeseen side effect: She can run longer -- far longer -- than she could before the operation. A year-and-a-half after the surgery, Van Deren attempted her first 50-mile trail race. She won, and told a reporter, "That was great! How far can I really go?" A few months later, in the summer of 2003, she entered her first 100-miler.
The distances kept growing. Those 50- and 100-mile events seemed like cute little schoolyard games compared to the 430-mile mile Yukon Arctic Ultra, considered the world's coldest, most extreme race. In 2009, Van Deren became the first woman to set out on the punishing weeklong trek. Within the first hour, some of her competitors had lost fingers and toes to frostbite in the minus-52-degree winds. Van Deren completed the first 100 miles with water (her supply, which she was pulling on a 45-pound sled, froze); 30 miles from the finish line, she fell through the ice, drenching herself. But she still finished. Now she's a sponsored North Face endurance athlete, and in 2010 she was named the National Geographic Adventurer of the Year.
There have been other post-op side effects. The surgery left a small blind spot in Van Deren's vision and impacted her short-term memory. Dates, time and directions are challenging -- she has a difficult time remembering the exact ages of her three children (Michael, Robin and Matt are 24, 22 and 20, respectively) and has left a fish dinner in the oven for hours until it was baked to a jerky-like texture. (It was only when her daughter arrived and smelled burned fish that Van Deren realized what had happened.) A jumble of sticky notes and BlackBerry reminders helps keep her on track. When tackling a new trail, she strategically places rocks or sticks to guide her way back, like little running breadcrumbs. "The joke in my family used to be, 'If Mom is gone for than 10 hours, call the police.' Now, it's 24 hours," Van Deren said.
Some have suggested that having that part of her brain removed gave Van Deren a leg up on ultramarathoning. In Runner's World, one neuropsychologist suggested the surgery affected the way she processes pain. Or that her newfound directional difficulties make her less distracted by details like hours passed or miles covered. But Spitz doesn't see the link: "She's always been full of energy, driven. This kind of surgery has been done on thousands of patients worldwide for decades, and there's only one Diane Van Deren." He does, however, believe her stellar physical conditioning made the operation safer and her recovery speedier.
Van Deren doesn't attribute her otherworldly prowess to the surgery. Rather, she believes it's the new outlook on life the operation gave her that allowed her to truly blossom as a person and as an athlete. "I felt so grateful, so free," she said. "There was pain [from the surgery], but I was so happy. In my heart, I felt I no longer had to worry, 'What if?'"
Now a sought-after motivational speaker -- she's keynoted events for the Epilepsy Foundation of America, the National Brain Injury Employment Conference and many more organizations -- Van Deren uses her sport as a pedestal to talk about epilepsy, much like Lance Armstrong and testicular cancer. Her message: "There is no mountain you can't conquer with passion, drive, discipline. If you fall, pick yourself up."
On May 7, she'll compete in the North Face Ultra series 100K in Argentina, followed by the North Face Canadian Death Race on July 31, a brutal 125K that includes three mountain summits and 17,000 feet of elevation change. So don't be offended if Van Deren doesn't pick up the phone when you call.