Ten Years Later (16 page)

She was notably athletic, the first to be chosen for all the neighborhood games. The
boys even asked Diane to play catcher on their baseball team.

She laughs. “So I had to take my pigtails and shove them up into my baseball hat and
they had to call me Dan. I knew at a young age I had something different. I remember
sitting down with my dad at the
breakfast table and saying, ‘There’s something different about me, Dad. I’m faster
and can kick and throw a ball better than the girls. And, Dad, I do it better than
the boys. So what’s different about me?’ ”

She says her father told her those were her God-given gifts and that she should use
them to her full potential. And boy, did she ever.

Diane competed in every sport she could get her hands and legs on: horseback riding,
swimming, track, basketball, and golf. At thirteen, she sold her quarter horse for
$500, bought tennis balls and a wooden racket, and developed a new passion: tennis.
By the next year, Diane was the Colorado state champion in both tennis and golf. She
was also named to the all-state basketball team. Gifted and impassioned, Diane was
determined to follow her dream of becoming a professional athlete. In her senior year
of high school, Diane set the wheels in motion. She asked several neighbors to help
fund her goal to play on the women’s pro tennis tour and made arrangements at school
to graduate early.

“So here I had two checks in my pocket.” Diane smiles. “I wanted to go play pro tennis,
I’d already talked to the principal at the school, but I hadn’t told my parents yet.”

When she did, and pulled out the substantial checks, Diane says her dad’s jaw dropped.
Game on. With her parents’ guarded blessing and steadfast support, she left home and
began traveling around the United States and Europe on the women’s pro tennis tour.
Over the next four years, she would also receive a junior college scholarship to play
on a top-ranked tennis team in Odessa, Texas. Diane juggled her time and her teams,
playing on both the pro tour and for her college. (She was able to do both by declining
any gifts or money on the pro tour.) In her senior year, Diane added yet another challenge
to her already full plate: training to compete in Hawaii’s Ironman Triathlon, a nonstop
competition that requires a 112-mile bike ride, a 2.4-mile swim, and a 26.2-mile run.
Diane knew she had the skill
set. At twenty two, she’d beaten every woman in a Texas marathon that she’d entered
on a whim.

These were extremely active and exciting years for Diane. She was at the top of all
her games and thought nothing of the brief out-of-body sensations she began to experience
during her twenties.

“It’s like a déjà vu feeling,” Diane describes. “I’d get this rising feeling in my
stomach and I’d get kind of nauseous. It would hit me for thirty seconds, maybe a
minute. If I had one, I could still talk to you. On the tour, I’d play through it.
And I had that for years.”

After graduating with a degree in speech communications from the University of Texas
of the Permian Basin and completing her stint on the women’s pro tennis tour, Diane
came home to Colorado. In the fall of 1982, she invited her mom to join her on a church
retreat in the nearby mountains. During their spiritual getaway, Diane and her mom
became friends with the woman leading the retreat. They talked of faith and family,
and the leader said she felt her son and Diane would hit it off. When they returned
home, a blind date was set up with Diane; her parents; the son, Scott; and his parents,
the Van Derens. During the dinner, Diane learned that Scott was an avid sailor and
was gearing up to sail from California to Hawaii. Intrigued, Diane and Scott had lunch
by themselves the following afternoon. The two quickly realized they shared a love
of travel and adventure.

“I just really liked her humor, athletic ability, she had traveled, and she was attractive.
There was a really good chemistry there,” Scott says. “I told my best friend I was
going to marry her.”

The next day, Scott left for California to prepare for his cross-Pacific adventure.
He tracked down the captain of a fifty-seven-foot sailboat, who allowed him to join
his five-man crew. Their first stop along the coast was Cabo San Lucas.

“I remember sitting on the beach, two or three weeks after I met Diane, looking at
the boat swaying in the water with the moon in the background, and just so excited
to be there because I had planned the sailing trip for many years after I graduated
from college, and had been looking forward to it, and yet there was something missing.
The distinct memory I have was,
This is awesome, but I want someone to share it with.
And I had just met that person, so it was great.”

On New Year’s day 1983, Scott and four fellow adventurers set sail for Hawaii. Three
weeks later, they anchored in Hilo.

“While Scott was in Hawaii, he was checking out the Ironman race course for me, writing
notes in the sand,” says Diane, “and I was training for the Ironman.”

After two and a half months, Scott returned home from his trip. He and Diane continued
to date and learn about each other. The two had actually grown up less than three
miles apart but attended different schools. Amazingly, their families worshipped in
the same church. Four months into their relationship, Scott asked Diane to marry him.

“It didn’t seem overly rushed or quick. It just felt like we clicked; it came together
at the right time,” says Scott. “There was just something really special about the
way I connected with Diane.”

Engaged and looking ahead to having a family one day, Diane decided to pull out of
the Ironman. In August 1983, the twenty-three-year-olds were married. Scott and Diane
both worked, he at a Fortune 500 computer company, she at her father’s steel company.
Always active, Diane continued to run and occasionally competed in local triathlons.
The Van Derens began having children three years into their marriage, and by year
six, they had a son, a daughter, and a second son on the way.

Several weeks into the third pregnancy, the first sign of a serious medical issue
revealed itself. Diane was sitting in a car with her mother, looking at houses for
sale.

“We were with a real estate agent looking for a bigger home. We were in the car driving
around neighborhoods and I remember my mom saying, ‘Honey, can you just grab me a
piece of gum out of the glove box?’ That’s all I remember,” Diane says. “I guess my
head went back, my body jerked. They thought I was having a heart attack.”

At the hospital, doctors were cautious but felt the incident was a fluke. Diane didn’t
drink, didn’t smoke, and had been a pro athlete. They concluded the seizure was hormonal
and sent her home. But several months later, during the second trimester of the pregnancy,
another episode occurred, at night. This one was big and bad: a grand mal.

“I only remember coming out of it,” says Diane. “I was very combative, screaming and
yelling. I was fearful, not knowing what was going on.”

A grand mal seizure involves a loss of consciousness and violent muscle contractions.
Diane’s body shook the bed intensely enough to awaken Scott.

“I said to no one, ‘Okay, here we go,’ just knowing in an instant flash,” he says,
“that things had probably changed forever.”

Scott called 911 while he, in horror, watched a pregnant Diane endure the seizure.
It would be the last night that Scott slept soundly for nearly a decade.

“He never slept. Every time I’d gasp or roll, he wanted to make sure I wasn’t seizing,”
Diane says. “Now that’s kind of a joke. If he snores, I think,
Eh. Let it go. The poor guy never slept for ten years
. Even now he says, ‘Oh, man, when I come to bed and I hear you breathing really hard
and you’re sleeping so hard, it’s so comforting.’ ”

Both twenty-nine years old, Scott and Diane faced a new normal that stemmed from an
old ailment. For so many years, the grand mal seizure that Diane had suffered as a
baby seemed like a nonissue. But, in truth, the odd feelings Diane experienced during
her twenties were faint warnings. Something dangerous was brewing. During Diane’s
third pregnancy, her brain’s secret life was exposed; the electrical discharges
it so boldly unleashed mimicked an internal lightning storm. A medical crisis was
now a member of the Van Deren family. Like the world’s worst roommates, seizures moved
in and began to wreak havoc in their home life. A desperate and lengthy search for
answers began, as Scott and Diane raised their three very young children: three-year-old
Michael, one-year-old Robin, and newborn Matt.

“What I found so frustrating was, here I had three healthy kids, and I was healthy
and vibrant. I felt like I had this incredible life . . .” She pauses. “And these
seizures.”

Scott and Diane tried their best to structure a life where freedom and a safety net
were both well represented.

“I would come home, and she would be pushing two of the kids in the double stroller,
and she’d have the third in a backpack, and she’s walking the dog.” Scott laughs.
“The goal, as unrealistic as it was, was to try to have a normal life and to try to
do fun things. We lived in a neighborhood where everything was close. We could go
sledding a block and a half away, there were tennis courts, there was a pool, Diane’s
sister lived close by, so we could walk there.”

In medical terms, the odd feelings Diane experienced during her twenties were actually
something called auras. Auras are warnings; they act as a seizure’s calling card.

Hello, I’m about to hijack part of your brain. Could be a small attack, or I might
knock you on your ass.

The stealth attacks were maddening. Raising three small children was trying enough;
Diane also had the anxiety of wondering whether her own body would suddenly check
out.

“That was scary. The fear of the unknown,” Diane explains. “We were always at the
ready. My confidence was crushed. I always had to think,
What if . . . ?
”

Scott was perpetually on duty as watcher and worrier.

“My reaction was always the same,” Scott explains. “If she was thinking about something
and became quiet, I thought she was having
a seizure. If she was ten minutes late, I was thinking she had a seizure or she’s
not in a good place, or she crashed the car. You just never knew, and I became very
in tune with the sounds and the looks and the tone of voice and her eyes.”

Protecting the kids physically and emotionally was a top priority for Scott and Diane.
When she went to bed early or missed dinner, Scott would lay out a picnic-style dinner
on the basement floor and tell the kids, “Mom just needs to rest.” It was more difficult
to shield them from the visual horrors.

“It was really disturbing for me to see a seizure, knowing the physical exhaustion
and the effort and the negative things that were happening during that seizure,” Scott
says, “and so we were very protective of the kids about that. I don’t think we were
entirely successful.”

Diane had little control over when a problem flared inside her brain.

“I didn’t want my kids to see me having a seizure. As a mom it just sucks. That’s
what my tears were for.
What am I putting my kids through?
”

Even more stressful: the possible tragic consequences of Diane’s having a seizure
while she was caring for the children.

“When I took a bath, I’d always let the family know,” Diane explains, “and whenever
I took the kids swimming, I’d always have to go to the lifeguard and say, ‘My kids
are fine, but you need to watch me. If my arms aren’t going, if I’m not breathing,
you gotta come get me.’ ”

They eventually hired a nanny to help Diane but still wanted to arm the kids with
preventative measures.

“My kids at a very young age had to learn how to drive a car, because if Mom seized
in the car, they would have to know how to take over,” Diane says. “We lived on a
ranch with a John Deere tractor, and we’d take the kids out and teach them to steer.
Grandma and Grandpa would take them out in golf carts, too.”

Diane always drove in the right lane so she could easily pull over to the side of
the road if she experienced an aura. Driving became a source of tension for the Van
Derens, as Diane battled for normalcy and Scott managed reality. They ultimately hired
a driver.

“If Diane says, ‘I feel okay, I can drive,’ she is an adult and she can make that
decision. But if she’s driving
our
children, and I think her eyes are sunken and I don’t think she looks quite right
in the morning, then I have an opinion about that.”

Determined to gain more control over Diane’s seizures and their family life, the couple
was constantly on the hunt for effective doctors and drugs. Prescribed medications
were ineffective. Diane was either allergic to the meds or suffered from their side
effects. Her seizures raged weekly.

“Our life revolved around what Diane needed. The parts of that Diane was aware of,”
Scott says, “she really resented and really did not like. She was very embarrassed
when she had a seizure. She didn’t want the attention, she didn’t want to be a bother,
she wanted to be self-reliant, and she didn’t want help from other people. She resented
not the family, but having to be in that situation, or to have other people see her
have a seizure or not be her normal fun-loving self.”

After repeated visits to various doctors over the years, Diane was diagnosed with
epilepsy—basically, another word for the condition of someone who suffers from recurrent
seizures.

“I didn’t know how to spell it, didn’t know what it was, didn’t know what it meant,”
Scott says. “It was, at that time, a really big word with a very negative connotation.”

Scott and Diane armed themselves with as much information as they could about epilepsy.
Scott scoured the Internet, read books, and reached out to the area Epilepsy Foundation
for guidance. They were both exhausted, drained from the combination of ordinary and
extraordinary challenges. Scott was juggling his many roles: father, husband, businessman,
patient advocate, and fill-in mom.