Dr. Mark Spitz is articulate, precise in what he says. He thinks – quickly – before choosing his words, and each one is exact.
He is head of the Adult Comprehensive Epilepsy Program at the University of Colorado Hospital in Aurora, making such precision a necessity. As part of a highly specialized team of epileptologists and neurosurgeons, he studies his patients’ brains and works to contain their epileptic attacks.
Sometimes, it takes medication.
Other times, it takes surgery.
“An epileptic seizure is like a fire breaking out, instead of the normal sparks of brain activity,” Spitz explains. “People often picture convulsions when they think of seizures, but for most people that’s not what it is.”
Instead, epileptic seizures usually begin in the temporal lobe, where a strange feeling or rush of emotion grows and then spreads through the body like a fire. People lose awareness of their surroundings, and it often takes some time to recover.
Diane Van Deren is articulate, too — even more so than Dr. Spitz, if you ask him. She is charismatic, passionate, brimming with life.
Considering that 17 years ago he and his team removed part of her brain, her eloquence might be unexpected. But 17 years ago she was almost willing to trade most anything to stop her seizures.
Today, Van Deren is one of the top endurance athletes in the world. She competes in races stretching from 50 miles to more than 400 – in France, Taiwan, China and the Philippines. Last month, she ran through the Dolomites in Italy. This fall, she’s headed to Columbia and Ecuador to run.
She trains relentlessly, anywhere from 10 to 30 miles every day. Her office is the outdoors, and she begins her days watching the sun rise from the trail.
“I found that, for me, whenever I had a premonition that a seizure was about to erupt, it didn’t develop into a seizure if I ran,” Van Deren says. “For years, the running really helped control the seizures. Someone once asked me what I was running from, and I realized I was running from the fear of the next seizure. That’s really how I got into ultra running.”
Her epileptic attacks had begun as an infant, when a prolonged seizure accompanied by a fever caused initial injury to her brain.
“That’s where it all started,” Spitz says. “She seemingly recovered, but then she started having seizures again in her teens and twenties — this weird, powerful rush of feeling — and she thought it was normal. But those seizures were injuring her brain.”
After her diagnosis, Diane suffered from debilitating seizures for 12 years.
She tried the medications. She ran. None of it was enough. Her short-term memory had been irreparably damaged by years of epileptic attacks, and her life was at risk from the intense seizures racking her body three to five times a week.
It was 1997, and it was time for surgery.
“I remember that day clearly,” says Van Deren, who lives on a ranch in Sedalia. “Some memory issues are difficult for me, but things that have a lot of emotion instill a really strong memory in my mind. I clearly remember being wheeled down for the brain surgery. I honestly was so pumped and excited; I knew I was in great hands, and I had the best team at bat for me.”
Dr. Spitz and his team were ready for her. A small army of epileptologists, neurosurgeons and other specialists guided her through the surgery, a right temporal lobectomy that removed a golf ball-sized portion of her brain.
Her last seizure was the night before the procedure.
“Everybody worries about brain surgery,” Spitz said. “But if you look at the risks and benefits and compare it to living with bad epilepsy, the risks are more with epilepsy. ”
Put simply, epileptic seizures originate in a single area of the brain, the hippocampus. In most cases, that region can be safely removed without significantly altering a person’s cognitive functioning.
Spitz likened the procedure to hearing loss: With two ears, damage to one does not make a person dysfunctional. Like ears, people also have two hippocampi, which are involved in processing information and storing short-term memories. When one is damaged, the other one compensates.
Van Deren’s short-term memory falters at times, and dates can be a challenge. When distracted, she sometimes struggles to gauge the passing of time. Many of these impairments, though, stem not from the surgery but from the injuries caused by her seizures, years ago.
“Any time anybody messes with your brain, it takes out a part of you, but I was willing to take those impairments to be seizure-free,” she said. “I’ve learned to live life with the impairments, and I’m still who I am. It didn’t change my heart, my personality, my drive, my zest for life. It just gave me a new opportunity to live life to its fullest and not think, ‘What if?’ Now I can think, ‘I can.’”
Freed from her seizures, Van Deren began to push the limits of her athletic ability after the surgery. She had been an accomplished athlete since her childhood, winning Colorado state championships in golf and tennis while in high school. She later played tennis professionally, touring Europe and the U.S.
After her surgery, Van Deren began to focus on running. She ran a 50-mile race in Granby and won, so she decided to try a 100-mile race. After that, North Face approached her to become one of their sponsored athletes.
By 2008, she was traversing 430 miles in the freezing Yukon Arctic Ultra, one of the most extreme events in the world. She won that, too.
“I don’t get wrapped up on the time and how long I’ve been out there when I do these events,” she explained. “I really try to stay in the moment. When you run for that long, you don’t think about what tomorrow is going to bring; you stay present. For me, being a professional athlete, you always lose the concept of time. That’s normal in any sport. That’s what we call being in the flow, or being focused. I’m not worried about hours and minutes when I’m out there racing. I’m just worried about where I am in the present time, and whatever the outcome is, I’ll deal with it at the end.”
Two years ago, Van Deren traveled to North Carolina to tackle the Mountain-to-Sea Trail, a 1,000-mile trek covering the length of the state. She set a record by completing the trail in just 22 days, calling it the Super Bowl of her career.
Now 54, she is contemplating what might come next. Perhaps she’ll write a book about her weeks on the Mountain-to-Sea Trail, or perhaps she’ll focus on composing music and playing her guitar. Either way, she isn’t finished yet and Diane tours consistently, speaking to others about her experience.
“Diane is one of those people who has been an amazing athlete since she was a kid,” Spitz said. “They aren’t wired like other people – they are more coordinated, stronger. Most people who have this surgery have a dramatic story in their personal life. For Diane, she discovered she was a world-class athlete.”