Ten Years Later

by Hoda Kotb

  “Diane did not have that problem,” Scott says emphatically.

  The real problem was finding balance with this new normal. The family was eager to partake in the long-awaited freedom from worry, but was it smart, for instance, to ride horses as a family? Diane’s answer was always yes, full speed ahead.

  “It was an awkward time,” Scott explains. “Everybody was so joyful that she got through surgery, but we’d been so focused on ending the seizures that we never thought about what she would do after surgery. Everybody just wanted her to be really careful. There were two sides to it. What were we going to do with this new health? The family was trying to pull back a bit and she wanted to absolutely surge forward.”

  Diane thrived, tackling the mountain trails, increasing her distances. Scott, an outdoorsman himself, understood the immense pleasure Diane gained from nature and exercise and supported her efforts.

  In the summer of 2002, Diane decided to enter a fifty-mile trail run, an ultramarathon, in Winter Park, Colorado, about an hour northwest of their home in Sedalia. An ultramarathon is defined as any race longer than the approximately 26.2 miles of a traditional marathon. Ultra runners tackle distances anywhere from fifty to one hundred and even four hundred and thirty miles along trails that can span from a sandy beach to a high-altitude mountaintop. They may run for days on end in brutal weather conditions with no sleep and no aid station for forty miles. And there’s no prize money at the finish line. The names of the races alone would make even the fittest of athletes run the other way: the HURT 100, the Yukon Arctic Ultra 300, the Canadian Death Race.

  Diane had never run an ultramarathon and had been simply enjoying the freedom of twenty-mile local trail runs by herself. Now she was ready to dig deeper. Scott supported her decision and joined her at the start and finish of her first fifty-mile race. The only runner Diane met that day was Richard Neslund. Twenty runners had signed up, but nearly all of them chose at the last minute to run elsewhere. Richard and Diane were the only ultramarathoners to run the course, which included a trip along the western slope of the Continental Divide in the central Rocky Mountains.

  Although he’s been running marathons for twenty years, Richard doesn’t consider himself anything other than an “old fart” who won’t share his age and runs only to decompress. When he met Diane the day of the fifty-mile race, he was surprised to hear that she’d never run an ultra. Less than ten miles into the race, Diane dropped a bombshell. She informed Richard that she had a brain injury, and although she hadn’t had a seizure in five years, there was a possibility she could have one at any time.

  “As soon as she said it,” Richard recalls, “all I could remember with my primitive medical knowledge was, Okay, a seizure. You’re supposed to have a pencil and put it between your teeth. What do I do? I have no idea what to do.”

  Diane laughs. “I’ll never forget the look on his face! Richard is very type A, very planned out. The poor guy!”

  Unable to keep Diane’s pace, Richard eventually faded back and Diane found herself alone on the trail.

  “Hey,” Diane jokes, “I knew if I seized he’d find me eventually.”

  Diane finished the fifty miles five hours ahead of Richard. The two have remained friends ever since.

  “After I finished that event,” says Diane, “Richard sent me a notebook about how to train, what hyponatremia is—a full notebook on ultra running. What a friend.”

  While supportive, Scott was somewhat unclear on this new direction Diane was taking with her running.

  “We got through that first one and I thought it might just go away,” he admits. “Turned out not to be the case.”

  Diane set her sights on one hundred miles. “I get bored easily,” she says with a laugh.

  She signed up for the Leadville Trail 100, a high-altitude challenge in the former silver-mining town of Leadville, Colorado, elevation ten thousand feet. The race begins at three thirty A.M. and there is always an August mix of snow and rain. Hungry for a challenge, Diane was excited to test her body and mind. Scott was disturbed.

  “Clearly it was not wise in my mind. It was the worst possible race conditions,” he reasons. “It was physical exertion and sleep deprivation. The way she made herself have a seizure in the hospital was riding her stationary bike and sleep deprivation. So, you’re out of the hospital and have this newfound health that we have all suffered mightily for over the years, gladly, to get you to a place where you’re healthy, and I understand you love to run, but now you want to do this?”

  Diane saw it differently, through the lens of a person who’d been a prisoner of epilepsy for a decade.

  “For ten years I lived, What if, what if? There were still no guarantees, but I had a new confidence. Everyone had to adjust. Scott was always so nurturing—protecting, protecting. And the kids, too. And then you enter this world where you’re not seizing anymore and they have to let go of those feelings. It’s huge. When I ran my first one hundred, everybody was a wreck.”

  Diane never seized, but at seventy miles, she twisted her knee on the rugged terrain. She managed to hobble along for several miles.

  “It was very late at night at the aid station and she was hurt,” says Scott. “I remember thinking, If she doesn’t finish, then she’s gonna come back and do it again. I really wanted her to finish.”

  But at mile seventy-two, Diane dropped out of the race. But not for good.

  “That kind of gave me a flavor of what a one hundred would be like,” says Diane. “I learned from that and it made me hungrier.”

  She began a rigorous training program that included a one-hundred-miles-per-week running schedule loaded with high-altitude training and consecutive twenty-five-mile runs.

  In June 2003, Diane completed the Bighorn Trail 100 Mile Run in Wyoming. She was the sixth woman to cross the finish line, in just under thirty-two hours.

  “I really thought that was it,” Diane says. “Honestly, in my heart I thought, I didn’t seize, I proved a bunch of doctors wrong, and I just placed in one of the top four hardest races in the country.”

  But several days later, the phone rang. Her dear friend who headed up the Epilepsy Foundation of Colorado called to ask if Diane would speak to a group of thirty grade-schoolers at a camp for kids with severe epilepsy. Still banged up from the race, Diane agreed to drive the seventy miles to Granby. At the camp, Diane sat in a circle with the children and played her guitar. She encouraged the group to live life to the fullest.

  “I told them, ‘If you want to drive a car, you go out to the country and sit on someone’s lap,’ ” Diane says. “ ‘If you want to swim in the ocean, just have someone with you. If you want to parachute, you tether to someone. There’s nothing you can’t do having epilepsy. You just have to approach it differently and think smart.’ ”

  Diane says the kids were having seizures even as she spoke with them. Then, a question.

  “One girl said, ‘Diane, would you run your next hundred-mile race for me? I have epilepsy and I have cerebral palsy and I can’t run. Will you do that for me?’ ” Diane recalls. “And then all the other kids started asking, ‘Yeah! Would you run for us?’ They asked me to let the world know they were normal, that there’s nothing different about them. I looked around and thought, Wow. I’ve been given a gift. This isn’t my life anymore.”

  Thus began a very busy eight years for Diane. And the very tricky portioning of her time pie—the training slice versus the family slice.

  “Once I got through the seizures and knew I wasn’t going to have any, I got kind of selfish, sure,” Diane admits. “In my heart there was a part of me that was like, We’ve raised the kids, I’ve got a wonderful husband, but I couldn’t do the things I wanted to do because I always had to think, What if . . . ? That’s when I got confident, and I just cut loose. I just kind of felt like, Okay, this is my time. I started doing well in my running and I’d been a pro athlete before and I knew what it took, and I started excelling. And that took over my time.”


  Scott saw clearly that Diane had found a second life as an accomplished athlete. It now made the best sense to join in the adventure. Family vacations became incorporated into many of Diane’s exciting events. “I took the kids, we went to the start, and then the kids and I went and hiked a fourteener [a mountain that exceeds fourteen thousand feet above mean sea level], and then we went back for the finish,” Scott explains. “One of the kids would cross the finish line with Diane, and so we tried to make it a family event.”

  That November, Diane entered and came in first in the women’s division, and second overall, in the San Diego 100 Mile Endurance Run. Soon after, she really cut loose. In 2004, Diane competed in eight ultras, from the mountain trails of Colorado, to the lush wilderness of Hawaii, to the frozen rivers of Alaska, to France’s majestic Mont Blanc. She even tackled the Hardrock 100 in Silverton, Colorado, among the hardest hundred-mile trail races in the world. Runners navigate steep climbs and descents, snowpacks, river crossings, and boulder fields. Of the 150 runners who compete, only about half finish the race within the allotted forty-eight hours. Scott served as a member of Diane’s crew team for many of the ultras she tackled.

  The tremendously taxing race schedule eventually began to reveal some areas in Diane’s life that needed work. She knew what she had gained from the surgery, but there was never any exploration of what she’d lost to the many years of chronic seizure damage.

  “People see me excel athletically, and then when I see someone and I don’t remember who they are, or I lose my sense of direction just a couple blocks away from where I need to be,” Diane says, “there is a disconnect—and with my family, too. My kids have grown up with it, but there’s been a lot of hurt and frustration. Even with my mother, who I love dearly. She’ll say, ‘How can you be doing all this, and then forget this?’ And that is what just”—she sighs—“makes me cry, because you don’t mean to hurt.”

  Diane turned to a neuropsychologist at Craig Hospital in Englewood, Colorado, a facility renowned for its work with patients recovering from brain and spinal cord injuries. The doctor put Diane through a series of tests to identify her neurological deficits. The results were revealing.

  “ ‘How do you function?’ ” Diane says the doctor asked her. “ ‘How do you function on a daily basis?’ And that blew me away.”

  Diane had been navigating her personal and professional life without the tools she needed as a brain-injury victim. She had no short-term memory, had no sense of direction, had difficulty managing emotional content, and was easily prone to mental fatigue.

  “I’ll never forget that, because when I left that office I was crying. I thought, No wonder! No wonder my kids were hurt. No wonder I couldn’t remember.”

  Now enlightened, Diane was eager for the doctor’s guidance on how to thrive within the constraints of her brain damage.

  “He started to give me the tools. ‘This is why you get lost, this is how you have to pack, this is why when you arrive for a race you can’t be worrying about what you need—write it on your bag, write it on your hand.’ Now I always have a laminated note down my running bra because I can’t afford to forget anything.”

  Advance preparation is key. Before a big race, Diane declares the Van Derens’ dining room table off-limits. Meat and potatoes are replaced by headlamps and expedition boots.

  “I start laying stuff out weeks before my event because I have to visualize the route and what I’ll need, because I can’t read a map or GPS well.” Diane laughs. “Everyone knows not to follow me. North Face always says I’m the barometer for how well a race is marked. If I don’t get lost, nobody can complain about getting lost on the course.”

  The collaboration with the doctor (whom Diane has asked not be identified due to his confidential work with other professional athletes) continues to be a vital component of her racing career.

  “People ask me, ‘What’s the hardest part of an event?’ and I say, ‘Packing! Getting to the airport! Finding my gate!’ ” She laughs. “How many times have I heard over the speakers, ‘Diane Van Deren, your passport is back at the security station. Diane Van Deren, we’re waiting for you at gate twelve.’ It’s all harder than the race. When I get to the start of a race, I just go. I don’t worry about anything, and that to me is my medicine. I just listen to the wind and my breath, and my brain just goes, Oh, baby, this is it.”

  The neuropsychologist also helped stock Diane’s tool kit for her personal life. He suggested that her family should offer up more cues and reminders throughout the day.

  “ ‘Mom, we have to leave in thirty minutes,’ ” Diane mimics, “where normally, Mom wouldn’t be anywhere close to being ready, or Mom would be late because of my problems with time. That’s why I burn stuff all the time. I put something in the oven, then go outside to fill up the horse tank or something, and come in and, boom! Burnt.”

  The doctor also explained that mental fatigue is a significant issue for a brain-injury victim. Grouchy behavior is the brain’s way of signaling, I’m done for today.

  “I’d be go, go, go all day with the kids and coaching and I’d come home and I’d say to Scott, ‘Why am I so irritable? Why am I so grumpy?’ I remember saying that to him for years. And the kids would see it. They’d see Mom being short, and that wasn’t me.”

  Diane’s more than seven years of therapy with the neuropsychologist have helped the Van Derens better understand her limitations. Family calendars, dozens of sticky notes, and backups to the backup reminders are vital.

  “If I don’t see it I’ll forget about it. I have it here,” Diane says, pointing to a large calendar, “then I have another note on my fridge in case the calendar gets a little overwhelming for my head, and then I have another reminder on my phone alarm.”

  When her kids’ birthdays roll around, she places notes throughout the house and in the car to remember to call. Simply recognizing that she needs help at times was an essential tip for Diane from the doctor.

  “He told me I shouldn’t be afraid when I see somebody to tell them, ‘I have a brain injury; I need some help.’ I never used to say that.”

  Diane jokes about the days when she didn’t write things down and, as a result, would ask a dozen people for directions in a city she’d traveled to for a speaking engagement.

  “When I was in Chattanooga, a guy in the audience raised his hand and said, ‘Do you remember me? I’m the guy on the bike you asked for directions!’ ” She laughs, “I’d get to know half the city when I’d go running before a speech in town.”

  The same year Diane began working with the neuropsychologist at Craig Hospital, she met Barb Page, who is now one of her dearest friends.

  “When I look at her,” says Barb, “it’s like you see molecules just bouncing off each other. That’s how I see Diane—her brain, her muscles, her being. It’s just hard for her to sit down and relax, ever. She is in constant motion in her head and in her heart and in her body.”

  Barb was working in 2004 as the executive director of the Craig Hospital Foundation. She met Diane when they both were involved in coordinating a philanthropic tour of the hospital. An early bond developed between the two because of Barb’s familiarity with the challenges of traumatic brain injuries.

  “She wants to believe she’s capable of doing more than she can do,” says Barb, “and she’ll beat up on herself. And I’ll say, ‘Diane, you’ve lost part of your brain. You can’t compensate for everything.’ ”

  Over the years, Barb has become Diane’s sounding board, and also a voice of reason. At seventy-two, Barb says she can offer Diane motherly advice.

  “I often say, ‘When you go to X, Y, Z city, you are not to rent a car but instead take a taxi.’ It’s things a mother would do in many ways, but she usually listens to me.”

  Usually, but not always. Barb says the same steely determination that makes Diane an elite athlete can also get her into trouble.

  “She flew to Atlanta to be part of a meeting seventy miles aw
ay, and I said, ‘Diane, you cannot get in a car and make that drive by yourself.’ Well, her hardheadedness came into play and she did it. And it took her an hour and a half to find a highway that’s ten minutes from the airport.”

  Diane admits, “She knows me much better that way than I probably know myself. With a brain injury, we can be impulsive and we can be . . .” She snaps her fingers twice, signaling urgency. “She helps me pause and think, Y’know, you’re right. And the beauty of the friendship is I don’t have to hide anything; she understands. I can be more open and share things with her.”

  In 2005, the trail miles began to increase exponentially for Diane. She’d also signed on with the North Face as one of the company’s sponsored endurance athletes and speakers. The running world knew nothing of Diane’s struggles with brain damage, not even the North Face. When she first began competing, Diane tucked a seizure pill wrapped in foil inside her hydration pack, just in case.

  “I didn’t want to be treated differently,” Diane says. “I didn’t want to be judged. I didn’t want to incite fear in a race director. I knew I was responsible for me. I wanted to prove myself as an athlete.”

  But in late 2005, the death of a little boy brought Diane’s personal story to life.

  She was working with a foundation in Breckenridge, Colorado, that raised money for adults and children with disabilities. At a winter fund-raiser, Diane was approached by a family after she delivered the event’s keynote speech. The Nelsons told Diane that their six-year-old son suffered from seizures and that he was a possible candidate for the brain surgery that had helped Diane.

  “I met Hunter,” Diane says, “and he was so precious. I tried to tell his parents what it felt like for him to have seizures, and I encouraged them to have the surgery. They told me they were good friends with Garth Brooks.”

  The country music superstar had arranged to fly Hunter to a facility where he’d be put through the same electroencephalogram test that Diane had undergone to determine the focal point of his seizures. The surgery could change his life, as it had hers. But on the day of the scheduled flight, there was heartbreaking news.