Running From the Seizures
When Diane Van Deren's epilepsy impacted her organizational skills, short-term memory, and time management, she found refuge and order on the trail, running 50 to 100 miles at a time. MACKENZIE LOBBY HAVEY DEC 12 2014, 12:30 PM ET
http://www.theatlantic.com/health/archive/2014/12/running-from-the-seizures/383123/
The thin serpentine road known as North Carolina Highway 12 is in a losing battle with nature. Bending along the northeastern coastline of North Carolina, it starts in the unincorporated community of Sea Level before racing north towards Cedar Island and terminating where pavement meets ocean. Linked by ferry, it picks back up on Ocracoke Island, the southern gateway to the Outer Banks and some of the most renowned beachside colonies in the U.S.
Over the years, Highway 12 has been regularly breached by the salty waters and piling waves of the Atlantic Ocean, flooding it, buckling it, and slicing it in two, picking it up and tossing it like a long asphalt rug and leaving it in a sandy wrinkled heap along the shore.
So, as 52-year-old professional ultra-distance runner Diane Van Deren took off down that mainland stretch of Highway 12 on foot on May 30, 2012, through Tropical Storm Beryl, she knew there would be risks. Indeed, she willingly trod down this road. She lived for this stuff.
With a penchant for getting lost, Van Deren stayed close to her guide, Chuck Millsaps, owner of the nearby Great Outdoor Provision Company. The pair tethered themselves together with excess pack straps to avoid being being blown off the side of the road into the salt marsh on either side. Like race walkers, they maintained a quick cadence but made sure the heel of one foot was firmly planted before the other left the ground.
Lightning cracked on the not-so-distant horizon. The rolling rumble of thunder made the ground shudder beneath their feet like a freight train was coming towards them. The storm shredded the region with 40-mile-per-hour winds and more than a half-foot of rain, much of it thrashing Van Deren and Millsaps sideways like a fire hose to the face as they ran.
The pair had risen at 3:30 a.m. that morning to begin the day’s 36-mile trek towards the ocean with the goal of catching the 1:00 p.m. Cedar Island Ferry across Pamlico Sound to Ocracoke Island. As they were blasted with marshy debris and skin-stinging beach sands, they knew if their 10-minute mile pace slackened, they’d miss their ride.
She ran and hiked as far as 62 miles each day through torrential downpours and biting winds, negotiating the gnarly, mud-soaked trails of the Blue Ridge Mountains.
That day’s 36-mile span was just a small fraction of the three-week-long, 1,000-mile journey across the entire state of North Carolina that Van Deren had begun 10 days earlier, known as the Mountains-to-Sea Trail. With anywhere from one to three hours of sleep each night, she ran and hiked as far as 62 miles each day through torrential downpours and biting winds, negotiating the gnarly, mud-soaked trails of the Blue Ridge Mountains. In the Pisgah National Forest, she carefully piloted paths marked by sheer rock face to one side and sheer drop to the other. She forded as many as 15 waist-deep streams in a single day before running eastward towards the rolling Piedmont foothills. A hat tip to the conditions, she trashed six pairs of running shoes in the first week, leaving her feet blistered and swollen.
The salt marshes, pocosins, lagoons, and sand dunes of the Coastal Plain region were supposed to be the easy part. But here was Van Deren, with 119 miles to go and a tropical storm bearing down. At 12:20 p.m., the duo realized that four miles still stood between them and the 1:00 p.m. ferry. If they failed to reach it on time, they were also sure to miss her second connection at midnight, the Hatteras Ferry, which would pretty much take her out of the running for a record-setting finish in under 24 days.
They picked up the pace, knowing too that the ferry may have shut down altogether on account of Beryl. With just moments to spare, the byway ran out of real estate and they stepped aboard. “You must have just come through those tornadoes back there!” shouted the ferry operator over the storm’s howl. Van Deren grinned at Millsaps, grabbed a towel, and sunk into a deep sleep for the two-and-a-half-hour ride across the sound.
Diane Van Deren (Photo courtesy of The North Face)
For many people, home is the comfort in what is known—mom’s garlic mashed potatoes served every Thanksgiving or sleeping in your own bed after an extended trip. Home offers a sense of identity solidly rooted in locale. For Van Deren, familiarity is important too, but the things that are familiar to her aren’t quite the same. For her, familiarity is running. The impermanence of constant motion, the rhythm of her breathing, and the forward plod of her feet through wide-open spaces and shrouded forest trails. It is running where she feels most at home.
Van Deren isn’t your standard running enthusiast, though. Many might say they feel at home on the trail. But for Van Deren it’s different, because her brain is different.
It all began with a grand mal seizure when she was 28 years old and two months pregnant with her third child. The first of many seizures she would experience over the next decade, Van Deren was eventually diagnosed with epilepsy. Losing consciousness as her muscles contracted, she’d convulse violently, often biting into her tongue as her jaw clamped down with wild force. For her, the worst part wasn’t the subsequent physical exhaustion, mouthful of blood, or blinding headache, but the fact that her husband and young children had to witness these frightening episodes.
One day, as she was walking the family dog down a dirt road near their ranch in Sedalia, Colorado, Van Deren felt an aura, a premonition that signaled the onset of one of these seizures. Far from assistance, she panicked and started running for home. Then something peculiar happened: nothing at all. “That was when I figured out that if I ran, I could disrupt the seizure activity,” she told me. “That’s how I found the love of running; I was running from the fear of the seizure erupting in my brain.”
"That's how I found the love of running; I was running from the fear of the seizure erupting in my brain."
For almost 10 years, this approach was largely effective. Every time she felt that tingling sense that she was about to lose control, she grabbed her running shoes and headed out the door into Pikes National Forest. She would immediately feel her muscles relax, her jaw slacken, and her anxiety ease. When she ran, her body acted in a familiar and predictable way and she found great comfort in that jurisdiction. Jacci Bainbridge, a close friend of Van Deren’s and a professor in the department of clinical pharmacy and neurology at University of Colorado Denver, thinks that there was something about exercising in the outdoors that helped interrupt the abnormal electrical discharges in her brain that were causing her seizures. “Nature was probably acting like a calming drug to her brain as she focused on the surrounding beauty and being outdoors,” she guessed.
With time, however, the frequency of the seizures increased to up to five per week, and the warning signals went away. Medication didn’t provide relief and even running no longer served as a good solution for the fast and furious convulsions. “It got to the point where I just couldn’t run every time or couldn’t get out the door fast enough,” she said.
When her doctors discovered that the seizures originated from a localized part of her brain—the right temporal lobe—they knew Van Deren would be an ideal candidate for a procedure called a lobectomy. “I was at a high risk for dying from a seizure at that point,” she told me. “So when my doctors discussed brain surgery as a possible solution, I was like, ‘Let’s go.’ I wanted to be a mom, a wife, and an athlete and I was willing to take the risk because the alternative wasn’t an option.”
So on February 26, 1997, Van Deren’s doctors removed a plum-sized portion of her brain in hopes of mitigating the seizures. The life-giving surgery was successful in doing just that, but it came with consequences too. What was left of her right temporal lobe was effectively injured, and it affected things like organizational skills, short-term memory, and time management.
Her husband and children were the first to notice the change. “I’d just be cruising through the day forgetting things and I was always late,” she said. “I got distracted very easily and multitasking became quite difficult.” She’d forget to pick up her kids from school or miss plane flights when she got absorbed in conversation at the airport. She often neglected to remember where she parked her car. Also a musician, she found that she couldn’t remember the words to songs she had just written.
“In some ways I had to grieve those things I lost, but I am also so grateful for what I gained,” Van Deren said.
Diane Van Deren (Photo courtesy of The North Face)
What she gained was a new lease on life, albeit with some caveats. While immediately afterwards she couldn’t even bend over to tie her shoes without severe pain radiating throughout her brain’s circuitry, she was eventually able to run again. Five years post-surgery, she signed up for her first ultra-distance race on a whim, a 50-miler in Colorado. Soon after that she completed the Bighorn Trail 100-Mile Run, which required her to run 29 hours straight through the night in the Bighorn Mountains of Wyoming.
What Van Deren discovered was that while her brain injury sometimes made it challenging to operate within the normal time constraints and organizational structure of everyday life, there was a unique sense of familiarity in running and being in the outdoors. In the same way she had relied on running before surgery, she began using it as a coping mechanism when she became frustrated by her brain’s inefficiencies. “My mind quickly gets overloaded by too much stimulation,” she explained. “There’s so much of that between computers and phones and social media. I just need to unplug and listen to the healing silence of the outdoors. That’s my medicine.”
Her waning short term memory meant that she processed time and trail in a new way. With the ability to focus intensely on the pure task of putting one foot in front of the other over great distances, she soon established herself as one of the world’s most decorated ultra endurance runners in history. Snagging top-five finishes at events like the 78-mile Canadian Death Race in Edmonton, the Dances with the Dirt 50 Mile in Hell, Michigan, and the Hardrock 100 Mile Endurance Run in Silverton Colorado, she earned a sponsorship from The North Face, allowing her the unique opportunity to step into the world of professional ultra-running.
Van Deren finds the familiar within herself, rather than in place.
Over the last decade she has tackled countless ultra-distance events, including becoming the first woman to finish the Yukon Arctic Ultra 430-mile race after winning the 300-mile version outright the year before, towing a 45-pound supply sled across the ice-covered tundra in -50 degree wind-whipping conditions. She has ventured into the wild traversing the treacherous Italian Dolomites, climbed South America’s highest peak, tread through the mossy jungle of the Philippines, run up the steps of the Great Wall of China, and traversed the mountainous terrain of the Alps through France, Italy, and Switzerland.
“Even when conditions are grueling, it’s therapeutic for her,” Millsaps, who helped her navigate much of the Mountains-to-Sea trail, told me. “There’s a peacefulness to her running.”
Even with the changing scenery and her waning memory, she insists that she feels at home as long as she’s moving in nature. “Visually I can only absorb about 30 percent of what most people see throughout the day, so on a trail, I can remember some of it, but not all,” she said. “One thing I always remember, though, is the emotion, the emotion of feeling vibrant and being able to do whatever my body will let me do.”
Van Deren finds the familiar within herself, rather than in place. This is why she eschews GPS watches and smartphone applications on trail. “Oh gosh, I don’t even know how to use those things!” she lightheartedly scoffed when asked. The surgery hampered her spatial reasoning too; it’s now impossible for her to read maps. Technology that is geared towards simplifying life actually does the opposite for Van Deren—these tools offer extraneous data that overwhelms her mind. Running out on the trails, however, she’s able to escape the clamor of the modern world and focus on simple, instinctive movements.
Even while running, Van Deren still gets lost fairly often. She compensates by relying on a system of strategically placed sticks, rocks, and branches at key forks in the trail so she can backtrack if necessary. “At races I don’t get wrapped up in the details of the course; it’s mental overload for me,” added Van Deren. “I know where to start and where to finish and then I just go.”
On the trail, there are no walls, limits, or reminders of the fact that her brain doesn't function like most.
Even when she forgets the intricacies of the path on which she has tread, the tempo of her breathing and the cadence of her feet signal a spark of recognition and a sense of refuge. On the trail, there are no walls, limits, or reminders of the fact that her brain doesn't function like most. Since memory and place are altered in Van Deren's mind, the closest thing she feels to a sense of home comes to her when she's on the move.