 http://www.rockymountainnews.com:80/drmn/local/article/0,1299,DRMN_15_5325791,00.html
By James B. Meadow, Rocky Mountain News
February 3, 2007
She wakes up in the winter dark, the Beast nowhere to be seen. Outside, the air is so cold and brittle it could almost shatter into pieces. But this is good - cold is good, colder is better. Colder means the snow will stay hard and the frozen rivers won’t suddenly crack beneath her. This is important because soon she will be in a place where she will need every slight mercy nature can provide, where icy, hurricane-force winds can cut like an ax through a foreboding landscape, where maybe the only thing that will keep her moving forward is her taut fitness and indomitable will.
So at 4 a.m., she begins running from her Sedalia home, her footfalls crunching on the snow. Mile after mile, hour after hour, frozen day after frozen day. It is hard work, but it feels good. It feels even better now that the Beast is gone.
True, his cruel legacy will always be with her. Her path will always be littered with scars and stumbles and memories that dangle just out of reach. But the crucial thing, the thing that gives Diane Van Deren a joy, a soaring gratitude, is that the Beast is gone forever.
She has conquered the Beast, just as she hopes to conquer a swath of Alaska later this month in the Iditarod Trail International, “the world’s longest human-powered winter race,” an insane crucible where competitors run, ski or bicycle through 350 miles of tundra wilderness, where 50-below-zero temperatures and wild moose lurk, with virtually no outside support.
Van Deren, 46, who is running, will spend as much as 20 hours a day on her feet, straining to log 50 miles, lugging a 40-pound sled of survival gear. She says the race’s allure is the “vastness, the beauty of Alaska.” She says she “loves a challenge,” likes “going outside the box,” likes “being different - it’s a passion.”
She sounds rational. But, surely, you think, surely to embrace all that hardship, this mother of three must be crazy, she must have lost her mind, right?
No, just part of her brain.
Arc of a rising star
The mother overheard the doctors. Better that the helpless 16- month-old baby should die, they said softly. The 50-minute seizure that had jolted her tiny body had likely left her a vegetable. No way this child was ever going to grow up to be normal.
Of course, they were right.
By the time Ray and Judy Kobs had moved their four kids from Omaha to Littleton in 1972, Diane, the second oldest, was a rising star. The one who went on to become all-state in basketball, tennis and golf, winning Colorado prep titles in the latter two. The one who went on to play professional tennis, bouncing around the U.S. and Europe - maybe not good enough to beat the Everts or Navratilovas, but talented enough to play on the same tour.
After five years of “glamour and fun,” she came home to Colorado and started teaching tennis. Then she met Scott Van Deren on a blind date. They married six months later. He became - and would always remain - her “knight in shining armor.”
They had two children, Mike and Robin. They lived in a nice suburban home. Scott did well in business. Diane got into running and became a nurturing mother. She was “incredibly happy.” Fairy-tale princesses never had it this good.
Then the Beast arrived.
She was two weeks into her third pregnancy, driving around with her mother. Mom asked for a piece of gum. That was the last thing Diane remembered.
She awoke in the emergency room. At first, no one was sure what was wrong. She was healthy. Didn’t drink, smoke or do drugs. She was an athlete. What could it be?
A grand mal seizure. Deep in her brain, an abnormal electrical discharge had sparked. Nearly 29 years after her first seizure, Van Deren had her second.
For the next eight months, she was fine. Sure, there were little “tinglings.” No big deal. Then, one night, the Beast barged into her bedroom.
After that second grand mal, the doctors talked medication. Uh-uh. She was too close to giving birth. Too dangerous for the baby. She’d cope somehow.
Matt was born healthy - that was the good news. The bad news was that the seizures persisted. Small ones. Large ones. Electrical firestorms sweeping through her brain. Some lasting seconds. Some lasting minutes. Epilepsy.
They put her on medications. Tegretol. Dilantin. Neurotine. The drugs gave her double vision, wobbly balance, rashes and constricted airways - but no relief. The Beast laughed at the drugs.
Her young children had to become caretakers. Had to know how to access the list of emergency contacts if Daddy weren’t around and Mommy had a seizure. They shuddered whenever they heard an ambulance siren. Scott hardly slept. He knew epileptics could have a seizure in bed and suffocate in their pillow.
It tore Diane’s heart to know that her kids had to grow up so fast. That roles were reversed. But she never gave in to despair or self-pity.
She discovered a way to stave off the attacks. Whenever she would have one of her “auras,” a tingling premonition that a seizure was imminent, she would grab her running shoes and take off. Over the undulating hills that surrounded the property of her family’s Sedalia home. Toward Pike National Forest. Trying to outrun the Beast.
She never had a seizure when she was in motion. Too bad she couldn’t be in motion all the time. Too bad she couldn’t outrun the whispers of prejudice she discovered. Epileptics are retarded. Epileptics are limited. Epileptics are scary.
She kept running. Kept coping. Being a wife and a mom. There was fear in the house, but there was also love.
And then there was hope.
Confronting the Beast
Eight years had passed. The seizures had increased to as many as five a week. Some came at home. Some came in restaurants, movie theaters, her athletic club. Anywhere.Van Deren began to feel the Beast was “consuming my life.”
Then her doctor mentioned a surgery. It was risky, of course. There was the chance of a stroke, complete memory loss, even death.
Van Deren hesitated a nanosecond and said, “Let’s go, let’s do it.” She had nothing to lose. Eventually, one of the seizures would kill her.
The doctors needed to know precisely which part of her brain was causing the seizures. They put her in the hospital, tethered a web of electrodes to her head, trained a camera on her and tried to induce a seizure.
Stress and sleep deprivation trigger seizures. Van Deren stopped sleeping. She jumped on a recumbent bike and pedaled with a frenzy, trying to exhaust herself. She hyperventilated. Come on, Beast, bring it on.
When she came to, the doctors told her they located the spot in her brain. She asked to see the tape of her grand mal seizure. It was the first time she had ever seen herself. Up to now, she had always felt that “the beauty of a seizure is you don’t really feel it. You have no idea what’s going on. You don’t remember anything.”
Now, there she was - smacking her lips, biting her tongue, clenching her hands, convulsing. She wept at the sight, at the abrupt knowledge of what her family had seen so many times. Then she got ready for surgery.
On Feb. 28, 1997, the doctors cut open her skull and reached into her brain. They removed a piece of her right temporal lobe the size of a kiwi. They sewed her back up and waited to see what would happen.
Eventually, they knew: The Beast was dead.
But its legacy lived on.
Van Deren is in her house, blithely and unashamedly sharing things about herself in a way that is both shocking and disarming. Then her tanned face - burnished by years of training in wind and sun - arranges itself into a broad smile and she says, “That’s probably why I became such a good distance runner. I’d go out for 20 miles and do 40 because I kept getting lost.”
Behind her, the refrigerator is festooned with notes, schedules, appointments - reminders of sundry chores. Outside, on her car’s dashboard, a mosaic of sticky notes do the same.
Forgetting simple tasks
The seizures that erupted for all those years have taken a toll. So has the surgery that removed the scarred part of her brain responsible for those seizures. Van Deren can easily forget how to perform simple tasks. such as inserting batteries into a headlamp. She can easily lose her way running on a trail or driving to a new destination. Time is an elusive concept. Her children’s birthdays drift from her mind like sand.
“Boy, being blond and missing part of your brain, too. Some deal, huh?” she asks, laughing.
What she doesn’t say is this: “Diane is in a class by herself. She looks at impossibilities as challenges. She has overcome the odds and the doubters.”
The person who says this is Don Gerber, a neuropsychologist who has worked with Van Deren to develop what he calls “compensation strategies.”
Strategies that have made her one of the country’s finest ultrarunners.
As soon as she could do so after the surgery, Van Deren began running. Ten miles. Twenty miles. Longer. For the fun of it, she entered a 50-mile event, the entry point to ultrarunning - races that can routinely stretch across days. After she won that race, she wondered if she could do 100 miles.
She ran 30 hours straight and completed the Bighorn 100 in Wyoming. But before she could find a path to new challenges, she found herself speaking at a camp for kids with epilepsy. You can do anything you want, she told them. Then a girl in the group said, no, she couldn’t. She had epilepsy and multiple sclerosis. Could Diane race for her? For all the kids who couldn’t?
Even as she wiped away the tears, Van Deren knew.
In 2005, she entered her first Iditarod Trail International. At Mile 80, she stepped into a moose hole in the snow, severely wrenching her right groin. She hobbled another 180 miles until the stress fracture she developed in her left ankle knocked her out of the race.
She went home, recovered and ran five ultras that year, finishing them all. She even placed eighth overall in the grueling Hardrock 100 in Silverton. In 2006, she ran five more 100- mile races, winning two. Epileptics are not limited.
In between races, she works as a motivational speaker, talking to groups about the myths and truths of epilepsy. In between races, she has found the time to be honored as Hooked on the Outdoors magazine’s runner-up for Outdoor Person of the Year. The guy who won the top spot? Lance Armstrong.
“I guess I can live with being beaten out by Lance,” she says with another one of her smiles.
That effortless smile makes it hard to fathom the litany of frustrating skirmishes that Van Deren faces each day, compensating for a brain that will never do all that it once could. As her husband says, “She’s kind of fighting for quality of life everyday.”
Many thoughts
Two tables in the Van Deren house are inundated. One has much of the gear that she will be pulling on the trail behind her in Alaska. Parka, insulated pants, gaiters, portable stove, sleeping bag. The other table holds some of the food she will be taking. On both tables, too, are notes, reminders of things her brain can’t hold by itself.
“It’s a lot of stuff to keep track of, isn’t it?” she asks, happily but wearily. “I mean, you just don’t want to forget about anything - it might cost you the race.”
Six days a week, she’s up by 3:30 a.m., running eight hours, sometimes dragging 55 pounds of sand on her sled so she can train on “tired legs.” Come Feb. 24, Van Deren will be ready to run those 350 forlorn miles.
As she does, she’ll be thinking about a lot of things. About her oldest son, Mike, a U.S. Marine who will be deployed to Iraq in April. About how Robin is doing as a freshman in college. About Matt and his high school basketball games. About Scott, her knight in shining armor.
Maybe she’ll even have time to reflect on how far she’s come, how she feels “blessed and so fortunate” to be where she is. Maybe she’ll get confused on the trail every now and then. Doesn’t matter.
No, when you’ve slain the Beast, it doesn’t matter if you’re life is not a fairy tale. It only matters that you’ve earned the chance to live happily ever after.
Alaska event
• What: The Iditarod Trail International is billed as “the world’s longest human-powered winter race” (not to be confused with the Iditarod Trail Sled Dog Race). Contestants have their choice of two distances - 350 or 1,100 miles.
• Where: The Alaska Range, from Knik Lake to McGrath.
• How: Running, biking or skiing
• When: Begins Feb. 24
• Details: The only support provided to racers are two snow machines in front of the leaders as far as McGrath, insuring a once-broken trail, and seven checkpoints with food and lodging. Two additional food drops are made by plane.
• More information alaskaultrasport.com/ iti_home_page.html
Hardest ultraraces
Van Deren’s five most difficult competitions:
• Hard Rock 100……Silverton
• Tour du Mont Blanc……Chamonix, France
• Bighorn 100……Sheridan, Wyo.
• Cascade Crest 100……Easton, Wash.
• Wasatch 100……Layton, Utah
Running for charity
•Van Deren is racing in the 350-mile-long Iditarod Trail International to raise funds for the Craig Hospital Foundation. To support her efforts, contact The Craig Hospital Foundation at 303-789-8650, or go to craighospital.org.
meadowj@RockyMountainNews.com or 303-954-2606
Copyright 2007, Rocky Mountain News. All Rights Reserved.
