Ten Years Later (18 page)

The physical challenges ahead were huge for Diane, but she also faced a significant
emotional hurdle. Dr. Spitz says he broaches the topic with all of his brain injury
patients before they undergo surgery.

“I tell everybody: the hardest thing about what you’re going to go through is nothing
medical. What you’re going to have to do with your family and friends is to figure
out where you fit in this world when your life is not dominated by epilepsy. Are you
going to go to school? Are you going to get a new job? What are you going to do?”
Spitz explains, “These people are often very disabled psychosocially. They’re overprotected
by family and friends, and we’re gonna take that all away from them.”

The answers to those questions for Diane lay, literally, at her feet. She hit the
ground running, euphoric about the new health and life she’d been given through surgery.
Only time would determine if her seizures were gone for good, but Diane felt relieved
and hopeful. The “What are you going to do?” concern did not apply to her.

“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
.”