Ten Years Later (17 page)

“It’s like if your toilet’s overflowing, you gotta do what you gotta do. I was simply
reacting over the years. When’s the next doctor’s appointment? How’s Diane doing today?
What needs to get done?” he says. “Yeah, there were some times when you just became
exhausted, but it was pretty much, what needs to happen today and what are we gonna
do about it?”

The daily uncertainty dominated the mood and focus of the entire family. No one meant
to lay out an invisible layer of eggshells, but sidestepping it was nearly impossible
in the Van Deren house.

“I remember the talks with the kids. I remember the, ‘Mommy, are you gonna get better?’
The kids didn’t want to upset me or stress Mommy out because they thought if Mommy
had a seizure it was their fault.” The limitations for Diane created by the seizures
were extremely difficult for her to accept. As an athlete and active mom, she despised
the intrusion of epilepsy.

“Diane did not take it seriously enough,” Scott says. “I had multiple differences
of opinion and discussions with her. ‘No, honey, you didn’t eat something bad yesterday,
this is related to your seizures.’ ‘Denial’ might be too strong of a word. She only
knew and understood what was happening in her head and she thought that was normal.
For us, it was just this ever-present fog of not quite understanding everything that
was happening and not knowing the way out.”

Diane also hated taking medications, another source of tension between her and Scott.

“Diane would get on effective meds and stop having seizures, and say, ‘Hey, look.
I’m not having seizures. I don’t need the meds anymore.’ And then have a seizure.
That happened probably three different times.”

Managing the unpredictable was complicated. Everyone wanted to protect Diane; Diane
wanted to live a full life.

“Her dad would come over to the house,” Scott says, “and Diane would be working in
the garden and it would be hot out, and
her dad would say, ‘Diane, you can’t work in the garden! You have to stop or you’ll
have a seizure.’ That was the exact opposite of what Diane wanted to do, so she’d
stop, and her dad would leave, and she’d go back out into the garden and work.”

The dilemma was that Diane’s decisions and their resulting consequences affected everyone.
A seizure was the lead domino in a cascading series of kid shuffling and task reorganization.

“The tough time was not even the day of the seizure, especially if she had a grand
mal seizure; it was the day after,” Scott explains. “The recovery from the seizure
would just lay her out.”

During a grand mal seizure, the entire brain is engaged, as well as the body’s muscles,
which strain and contract. In an effort to stop the seizure, the brain does too good
of a job, shutting down everything from emotions to memory. While the seizure itself
lasts for perhaps a minute, the brain’s busy work of shutting down and rebooting every
system can continue for hours.

“When you come out of it,” Diane describes, “you feel like you’ve been hit by a truck.”

In 1995, by chance, Diane discovered a possible strategy for eluding a seizure. She
was walking the family’s golden Labrador retriever about two miles from home. Suddenly,
she felt the onset of an aura.

“I started running home. I just thought,
I gotta get home to a safe spot
. And when I got home, I realized I didn’t seize. And I thought,
Wow!
”

From that day forward, Diane used running as the most powerful weapon against her
very worthy and wily opponent, epilepsy.

“My thought was,
I’m gonna beat it. I’m gonna beat this SOB.
”

Diane’s running shoes were never far from reach. When an aura bloomed, she’d strap
on her shoes and hit the trail leading to the Pike National Forest, six miles from
her backyard. Her goal was to run as long as it took to block the seizure, sometimes
a two- or three-hour outing.

“That’s where my love for long-distance running came from. I’d run for hours. The
fear of the seizure was just gone. It was euphoric. It was my safe spot. It was heaven.”

The strategy worked often, but circumstances didn’t always allow for an escape. The
reality was, Diane frequently seized at inopportune moments: during a work dinner
for Scott, in a crowded movie theater, in front of hundreds of spectators while coaching
her daughter’s basketball team. Regrettably, the auras began to offer Diane shorter
and shorter warnings. Chronic seizures, small and large, for more than fifteen years,
created medical mayhem in her brain.

The Van Derens were running out of options. Medications and multiple doctors were
not providing solutions.

“I had one doctor who told me, ‘You’ll never drive, you’ll never swim alone, you’ll
never beat epilepsy, here’s your prescription,’ ” she says. “And I looked him in the
eye and I said, ‘You son of a bitch.’ And I just walked out. I kept going and going
until I found a doctor that let me be me.”

She found him in 1996. The executive director of the Epilepsy Foundation of Colorado
referred Diane and Scott to Dr. Mark Spitz, a neurologist at the University of Colorado.
Interestingly, Diane was not a unique case. Spitz says about a third of epilepsy patients
continue to have seizures even though they are taking proven epilepsy medications.

“She was very frustrated,” recalls Spitz. “If you take her as an individual, what
was especially hard for her was that she had been a very high-functioning person.
She was an outstanding athlete in high school and college, and with all of her seizures,
she was afraid to go out of the house. She couldn’t drive, and to quote her, she had
three kids, and her kids were mothering her; she couldn’t mother her own children.”

Diane shared with Spitz that running was the only way she could partially control
her seizures. While Spitz had seen other patients
who’d developed a strategy to abort their seizures—like a firefighter who would grab
his shaky right wrist with his stable left hand when a tremor began—he had never known
someone to use running as a suppression tool. He calls the concept a real medical
phenomenon, not just Diane’s imagination. Spitz explains that when brain cells are
restful (for instance, when you are eating at a quiet restaurant or watching a movie),
they are more apt to accept the invasion of abnormal electrical activity that sparks
a seizure.

“In contrast, I think what was happening with Diane when she was running,” Spitz says,
“is that she would get in a specific mind set where the cells the seizure might normally
spread into instead wouldn’t accept that abnormal activity. The seizure would start,
but it would fizzle out. It wouldn’t go anywhere.”

The first move for Dr. Spitz was to put Diane through a series of neuropsychiatric
tests to assess her memory and brain function. Not surprisingly, based on Diane’s
extensive history of seizures, the results indicated she suffered from short-term
memory loss and problems with directional aptitude.

“The part of her brain that was abnormal to begin with, that her seizures emanated
from, has two main jobs: one is short-term memory, the other is processing information
with regards to its emotional content,” he says. “The seizures that she’d had over
the years further injured her brain, and her brain wasn’t normal because of that.”

Spitz next ordered an MRI for Diane. The results were telling. Images revealed scarring
of her right hippocampus. The doctor saw hardening and shrinkage of cells in a very
isolated area.

“The next step was that I had this hypothesis that her seizures were coming from a
relatively regionalized region of her brain, and that it was a region of her brain
that we could safely remove surgically, and hopefully stop her seizures and not leave
her with a significant neurological deficit.”

In June 1996, the doctor began a procedure considered standard in major medical centers
around the country. He admitted Diane to Denver’s University Hospital so she could
have several seizures in a controlled setting. Technicians wired up the outside of
her head with electrodes so experts could monitor her brain’s electrical data during
the seizures. Diane would also be videotaped seizing, since specific body movements
also indicate the epicenter of a seizure.

“What I’m interested in as an epileptologist, specifically for this type of surgery,
is not how big and bad the seizures are, but anatomically where they start,” Spitz
explains, “because where they start is the key to the possibility of doing surgery.”

Diane hoped fervently for a seizure to occur while she was hooked up in the hospital.
It did. When she felt the aura come on, she willed her body not to fight it, but instead
to let it flow, knowing intense pain would follow. Diane’s brain generated multiple
seizures during her four-day stay, one a grand mal. Diane says when she came out of
it, she heard Dr. Spitz cheering.

“He was like, ‘Yeah! We got it! We got it!’ ”

Data revealed where in the brain Diane’s seizures were originating.

“It was the sweetest spot,” says Spitz. “If I could have put it anywhere in her brain,
that’s where I would have put it.”

Here’s where we revisit the question posed at the beginning of Diane’s story: Why
would someone possibly
elect
to have brain surgery? The reality for Diane was, the risks of having surgery (a
blind spot in her vision, a 3 percent chance of a stroke, an even lesser chance of
dying) were smaller than the risk of
not
having surgery. Diane could either lose a golf-ball-sized chunk of her brain or,
very probably, lose her life.

“She would have continued to have seizures, and there are good studies that tell us
that continued seizures of her type would have caused her memory and other brain functions
to continue to deteriorate
further,” says Spitz. “The other thing is death. If you look at good statistics, the
chance of dying for her as a direct result of a seizure after ten years was one in
ten.”

Diane was a mother of three, a wife, a gifted athlete, and a fighter. She’d finally
found in surgery the sword she needed to slay the beast once and for all.

“Oh, slam dunk,” Diane says. “I didn’t have any hesitation. I really and truly felt
like I was at such a risk of dying at that point. You can call it radical brain surgery,
but what was really radical were the three to five seizures a week. I couldn’t get
it fast enough.”

Diane’s eagerness was also driven by a stark black and white video image. Back when
she was lying in bed at University Hospital, hooked up to electrodes, exhausted from
a grand mal seizure, Diane asked Dr. Spitz to show her the videotape they rolled to
capture her movements.

“I had no idea. I’d never seen anyone have a seizure,” Diane says, shaking her head.
“And, whew. Wow. That’s the first time I understood why my family lived in fear. I
understood why my son developed anxiety in class. My oldest would sit there in his
coat all day like,
Is my mom okay?
When I saw that tape, it was the piece of the puzzle that was missing. I was always
comforting everyone, ‘Mom’s fine, don’t worry.’ But then when I saw what I looked
like, I could be more empathetic. I had chunked off a piece of my tongue. I have blood
running down the side of my face. You can hear me on the tape just, ‘huh, huh, huh’
[rapid breathing sounds]. I have all this blood going down the back of my throat.
I’m gurgling, I’m exhausted, I’m blue. I’m just trashed. And as I come to, I’m disoriented.
I don’t know who’s who. And I have a massive headache.”

The time had come. On February 20, 1997, Diane celebrated her thirty-seventh birthday.
Several days later, the night before her surgery, she had one last grand mal seizure.
Diane was now just hours away from a potentially life-changing operation.

“I remember being in the operating room and I was joking around,” Diane says, “and
then I turned to see
all
this equipment on a table and I said, ‘Okay, time to put me to sleep.’ ”

In the waiting room, Scott was joined by Diane’s mother, his brother, and his parents.
Diane’s father had died four years earlier. The kids, now eleven, nine, and eight,
stayed home with the nanny. Scott slipped away to visit the chapel downstairs.

“I remember saying a prayer in the chapel that day”—his voice cracks—“about Diane
being God’s precious lamb and not knowing the outcome. It was beyond my control.”

The surgery, described at the start of this story, went smoothly. In terms of her
prognosis, if Diane could live one year without having a seizure, she would most likely
never have another. There would be one post-op complication: a blind spot that affects
Diane’s upper-right peripheral vision. The other complication was accidental, caused
by Diane herself. Her shunt, a tube that drains excess spinal fluid from the brain
to another part of the body, was sticking out of Diane’s head bandage as she lay in
the intensive care unit.

“When I came around I was quite combative, and I grabbed that shunt and dislodged
it. When I grabbed the shunt, the fluid had nowhere to go,” she says, “and I was lying
there in the most excruciating pain. I was kicking and dropping F bombs. But I didn’t
know. I was in La La Land. I thought everyone was hurting me. I even pulled out my
IVs and took off down the hallway. They eventually strapped me down. I was in such
pain.”

After eight days in the hospital, Diane returned home. She focused on recovery and
regaining the fifteen pounds she’d lost post-op. The Van Derens had hired a nanny
a month before the surgery to familiarize her with the family; she stepped in to help
with the kids when Diane went in for the operation. Back in her own bed and relatively
rested, Diane soon began to feel the itch to run, her
“medicine” for so many years. (She does
not
recommend this idea for anyone else.)

“After a few weeks, I was at the house and I could hop. Just three steps,” admits
Diane. “And I thought,
Hot damn! If I can hop, I can run!
I remember tying my shoe and holding my head. The pressure was awful, but I just
wanted to get on that mountain. I knew my running was my healing.”