Matthew Staver for The New York Times
She used to run away from epileptic seizures. Since brain surgery, she just runs, uninhibited by the drudgery of time and distance, undeterred by an inability to remember exactly where she is going or how to get back.
“It used to be, call for help if Mom’s not back in five hours,” Van Deren said. She laughed. “That rule has been stretched. I’ve got a 24-hour window now. Isn’t that sad?”
Van Deren, 49, had a lobectomy in 1997. She has become one of the world’s great ultra-runners, competing in races of attrition measuring 100 miles or more. She won last year’s Yukon Arctic Ultra 300, a trek against frigid cold, deep snow and loneliness, and was the first woman to complete the 430-mile version this year.
This weekend she will run in the Hardrock 100 in Silverton, Colo. It has a total elevation gain of 33,000 feet and crosses the top of 14,048-foot Handies Peak. About 150 people will enter. About half will not finish the 100 miles within the allotted 48 hours.
For some, it will be the challenge of a lifetime. Van Deren does several such races every summer. She supplements the calendar with competitions around the world, some in the dead of winter.
On early-morning training runs, especially when pulling a sled with 60 pounds of sand through the snow, Van Deren sometimes startles hikers. They do not see under her blond hair, above her right ear, where an uneven crease maps where her skull was put back together.
They just see a smiling woman who appeared from nowhere — and someone who just might need help getting pointed in the right direction.
“When she is running, it helps her,” Don Gerber, a clinical neuropsychologist who has worked extensively with Van Deren, said of the hole in Van Deren’s brain. “In the rest of her life, it does not.”
Race preparation is the hardest. Not the training, which Van Deren does eagerly, but the packing. In stopping the seizures, her mind, otherwise sharp and unaffected, was robbed of part of its memory and organizational skills.
Her dining room table is covered with gear. She divides it into carefully marked bags that will await her at various aid stations, sometimes 40 miles apart, along the next course. Which bag needs a headlamp? Sunblock? Extra outerwear?
Van Deren can no longer read maps. Telling her to go five miles, turn left, then right, then left is a confusing algorithm. She rarely runs a race without a wrong turn. “Everyone knows not to follow me now,” she said.
Gerber, who works at Craig Hospital, a rehabilitation hospital in Englewood, Colo., for people with brain or spinal-cord injuries, said that Van Deren “can go hours and hours and have no idea how long it’s been.” Her mind carries little dread for how far she is from the finish.
She does not track her pace, even in training. Her gauge is the sound of her feet on the trail.
“It’s a kinesthetic melody that she hits,” Gerber said. “And when she hits it, she knows she’s running well.”
Her family and friends offer full support. Still, they worry.
“I’m just terrified we’re going to lose her,” said Barb Page, executive director of the Craig Hospital Foundation.
Running was always the self-prescribed antidote to seizures. When Van Deren felt an aura, a tingling sensation that signaled an upcoming seizure, she would lace her running shoes and go out the door. She never had a seizure while running.
Born Diane Kobs, she was a stellar multisport athlete who became a touring professional tennis player, unaware of her future bout with epilepsy. She married Scott Van Deren, taught tennis and dabbled in distance running.
Pregnant with the couple’s third child (Matt, now 19), Van Deren had what seemed an out-of-nowhere grand mal seizure. Then another.
Tests found a black mark on her brain, a scar of sorts, traced to an unexplained seizure that Van Deren had at 16 months. Like a burst dam, epileptic seizures flooded her life, three to five times per week.
For nearly a decade she worried when the next would strike. When Scott was at work? While driving?
Surgery to remove the part of the brain where seizures originate is sometimes possible, if the source is a concentrated spot. Van Deren’s head was tethered to electrodes. When she later saw the videotape of her next seizure, she witnessed what family and friends saw countless times: a rigid woman convulsing uncontrollably. Eyes rolled back. Blood dribbled from her mouth.
It was horrifying. And illuminating.
“I always thought epilepsy was my problem,” Van Deren said. “It wasn’t.”
She was eligible for surgery. She did not hesitate. She has not had a seizure since.
The surgery was not without costs. Van Deren struggles to remember people she recently met and has missed flights simply by getting too involved in a conversation at the gate.
“She never remembers where she parked,” Page said. “Never, not once, to this day.”
The lapses are not always amusing. Her husband placed photo collages around the house to help his wife remember vacations and family milestones that slipped past her memory’s reach. Robin Van Deren, the 21-year-old middle child, recently told her mother that she lost a part of her in the surgery. They cried together.
About seven years ago, Van Deren looked for help. She was teamed with Gerber.
He has taught her coping tricks to keep life organized, from placing the keys in the same spot every time to marking trail forks with a rock or stick, just in case she has to go back.
For someone who could not take a bath 12 years ago for fear of drowning from a seizure, every fork is just another challenge, happily accepted. That is why the text messages and e-mails from Van Deren so often come at about 3 in the morning, saying she is about to leave the house, maybe run up Pikes Peak.
They are usually sent from a BlackBerry that her children have taught her to use. And they are usually filled with lots of exclamation points.
