Local runner takes on the stigma of epilepsy by conquering the Colorado Rockies
Jenny LaBaw sat on the side of the road, 10,000 feet high in the Rocky Mountains. She’d just run 5 miles up a steep grade and started questioning whether she could go on, if she had it in her to keep running day after day toward the finish line some 180 miles away.
“I stood up, dusted off my butt from sitting in the dirt and started forward again. I didn’t have an option. I had to keep going.”
That’s just one of the insights the 33-year-old shares on her blog, www.LaBawLife.com, chronicling her nearly 500-mile run a few months ago from the border of southern Colorado to where the state meets Wyoming.
LaBaw lives just outside of Oroville and works as an independent personal trainer and strength-training coach. She moved here in 2010 from Rifle, Colo., after her boyfriend, Marcus Brown, a Chico native and videographer, enticed her to come visit. She is a Reebok-sponsored athlete, a CrossFit Games champion who excels at that competition’s athletic medley of weight-lifting, running, gymnastics, biking, swimming and mental endurance. LaBaw finished sixth at the 2011 CrossFit Games and won the 2012 Northern California regionals.
LaBaw has the physique of a Renaissance sculpture. Her eyes burn with a fierce, piercing gaze of concentration. But what makes her a warrior is that she has turned her own frailty into triumph. LaBaw has epilepsy. In mid-September, she set off on a personal journey, running 489 miles in 31 days and raising $52,510 for the Epilepsy Foundation—the majority of donations coming from social media outreach. She aptly titled her adventure “Move Mountains: A Run for Epilepsy.”
For more than 20 years, LaBaw kept her epilepsy a secret from most people. Shortly after she won the 2012 CrossFit regionals, however, she released a video describing life with the disorder. The main message: Don’t let it stop you from doing anything. LaBaw had always used epilepsy as motivation to catapult her to greater heights. She wanted others do the same by helping expunge the stigma associated with epilepsy, one steeped in history.
“People with epilepsy have been portrayed historically as being demons. They were exorcized. Locked away in asylums. The stigma stretches back to the Bible,” LaBaw said. She also wanted to confront the humiliation. “Losing control in a crowded place in front of total strangers. Peeing all over yourself. Can you imagine?”
The response to her video was overwhelming.
“People reached out to me from all walks of life explaining how much my story meant to them,” she said. “They had epilepsy—or their son, mother, best friend did—and in some way I had inspired them or given them hope they had lost.”
The nearly 500-mile run is just a subplot to a story that began when LaBaw was a child, a story just as much her mother’s as her own. Cathy Desautels—a nurse—first noticed her young daughter had problems clutching things with her right hand.
“She’d drop a toy. Sometimes she’d fall off the jungle gym. But she always laughed when it happened, so it wasn’t so alarming,” Desautels recalls on her daughter’s blog. Then the situation worsened. “When she lost control of her bladder,” she said, “it was clear something bigger was going on.”
LaBaw was soon diagnosed as having simple partial gelastic seizures likely caused by a scar on her brain due to bacterial meningitis when she was a baby. Her mother spent countless hours in medical libraries researching her daughter’s condition, searching for the best treatment. The family traveled all over their home state of Colorado meeting with pediatricians and neurologists. LaBaw was given numerous trial medications.
“We’d find a medication that worked for a while, only for the seizures to start up again several months later,” Desautels said.
The darkest hour for Desautels came when 14-year-old LaBaw, always the most physically active person at school, went through a series of extensive evaluations. The doctors kept her sleep-deprived, flashed lights in her eyes; essentially tortured her to try and induce a seizure so they could locate where the brain activity was coming from.
“It made my heart ache to sit with her as she was confined to a hospital room while tethered by wires to an EEG machine and with mirrors capturing her every move for two weeks at a time while nurses and technicians tried to induce seizures,” Desautels wrote. The doctors confirmed that LaBaw had a tonic clonic (grand mal) seizure—loss of consciousness and violent muscle contractions. Surgical intervention was ruled out as a treatment.
In recalling those days, Desautels acknowledges that she grieved her daughter’s diagnosis and wept privately as she watched her go through the embarrassment of incontinence or the unexpected falls that made her scared to attend school.
“I let my mind go to the worst possibilities, the what-ifs, and the oh-my-Gods. Will she ever be able to have children? Will she be able to live a normal life, go to school, drive? All the while, I kept those fears from her. Those were not a kid’s to bear. I remember silently begging any spirit that was listening to let me endure the side effects of all the meds for her,” she wrote.
Today, LaBaw takes an anti-seizure medication called Keppra. She has not had a seizure in two years, but she has a constant tingling in her right arm. “It’s there 100 percent of the time,” she said.
For most folks, a 500-mile run across the Rockies would take a year to plan. But LaBaw is not most folk. Late last June, she and Brown took a trip to Colorado to visit her family. While driving north out of Durango on Highway 550 with the windows down, LaBaw could taste the mountain air. The aroma of pine needles flooded the car. The sky above was cloudless and azure blue. Home, the Rocky Mountains, where she was raised. All the old feelings rushed in.
“I looked out at the mountains,” LaBaw wrote in her blog, “and then I looked at Marcus. I told him I was going to run across Colorado and raise money and awareness for epilepsy. Marcus looked at me and smiled. Said ‘OK. I’m in.’”
Long-distance running is a lot like black licorice. You either love it or hate it. The lovers tend to be introverts, thinkers. LaBaw fits that model. Ask a long-distance runner what he or she thinks about while running, and you’re likely to get an array of answers. Some say they think of nothing. Others say they think of everything. LaBaw said, “My brain goes from simple thought to complex ones. Bright thoughts. Deep thought. Dark thought.”
“Getting on trails, getting dirty,” she said, “that’s heaven.”
What better place, then, for LaBaw to spend the next 30 days running and getting in touch with her inner John Denver: “And the Colorado Rocky Mountain high, I’ve seen it raining fire in the sky. You can talk to God and listen to the casual reply, Rocky Mountain high.”
Running is an individual sport, but running nearly 500 miles in a month is a team sport. Chico author and sports massage therapist Tory Zellick would take care of LaBaw’s body. Zellick’s father, Vaughn, drove the truck called Big Blue with flashing lights, a kitchen and a first-aid kit most often used for LaBaw’s feet. Brown visually chronicled the adventure. Throughout the month-long journey, LaBaw’s Labrador retrievers, Ziggy and Pogo, provided emotional support. And her mother and father, Desautels and Jeff LaBaw—who divorced when LaBaw was in the sixth grade—joined her most of the way.
The original plan was to camp along the route, but the members of team LaBaw did so about only two-thirds of the time thanks to strangers—soon-to-be friends—who donated their cabins and purchased hotel rooms for them.
On her blog, LaBaw wrote with a Whitman-like eye for detail and observation, an elaborate tapestry bolstered by beautiful photos that create an amazing scratch-and-sniff story of blood, sweat and tears. She didn’t write it to create a guidebook or a diary of her trip; it’s not a self-published vanity project. She wrote to express how her journey was transformational and even transcended its original purpose to raise awareness of epilepsy. The descriptions of each day she chronicled are both delightful and instructional.
LaBaw began the journey at the New Mexico/Colorado border. She ran to Durango, covering 24.8 miles on the first day. Day two hit 85 degrees. To put this temperature in context, the 2012 Boston Marathon sent more than 100 runners to hospitals for heat exhaustion; it was in the low 80s. She struggled.
“My head hurt,” she wrote. “My feet hurt. My legs hurt. My mind was starting to go to a dark place.” She questioned herself: “Can I really run 500 miles?”
The great ones explore these deep, dark places and look for light. Inspiration. A spark. Day three marked the first of eight mountain passes that LaBaw would climb: a 3,875-foot ascent and 1,417-foot descent for a total of 23.5 miles in five hours. Blisters boiled on both feet. Her mind spiraled toward the abyss. Finally, the spark arrived when a professional ultrarunner saw LaBaw struggling up the pass. The woman pulled her car over and ran several miles with LaBaw while offering advice: “She told me to learn to take eight-minute naps, and to eat Oreos even if you don’t eat Oreos,” LaBaw wrote.
The day-three fire turned to embers by day six. Her mind was beating her body.
LaBaw wrote: “I bounced from positive thoughts of how amazing it is to be running through the mountains, to negative thoughts of how hard it is to be running alone, to moments of clarity of how lucky I am to be running at all.”
She ran through crippling pain and low spirits and then Lydia Shaeffer entered her mind. A friend of Lydia’s mother had contacted LaBaw not long after she announced her run. Lydia died on Mother’s Day in 2014 from Sudden Unexpected Death in Epilepsy (SUDEP). She was only 7 years old.
“Lydia and her strength carried me through,” LaBaw wrote.
Day nine brought more blisters. Her feet were a mess. Hot, black asphalt and a 16.1-mile descent made it worse. Courting disaster, the following mantra entered LaBaw’s mind: Keep moving forward. A woman named Lenora Raines had contacted her. “She told me of her daughter, Katie, and that she had lost Katie to SUDEP,” she wrote. “Lenora said Katie always said to keep moving forward. I think of this when the steps get heavy and hard.”
Day 18 found LaBaw running to her hometown. She ran 26 miles from Glenwood Springs to the front steps of the house where she grew up in Rifle. Her mind reeled.
“I thought of all the times I’ve spent up on top of those beautiful mountains with my dad and brother camping, hunting and fishing,” LaBaw wrote. “That’s where I first learned to drive a stick shift, where I saw my first bear in the wild, and where I first drew back my bow at an elk.”
The girl who once harbored a secret would run back to her high school as a woman now liberated from it.
Long-distance running allows—maybe invites—thoughts to drift in and out of the mind. Thoughts bring respite to the monotony. After two hours of intense running, at the peak of Ripple Creek pass and on her way to West Lost Lake, LaBaw lost herself in a reverie about a father/daughter weekend spent here.
“It seemed like yesterday that I was anxiously following his footsteps as we hiked to go spend some time throwing a line in the lake, roasting hot dogs over the campfire and feeling like the most special girl in the world,” LaBaw wrote. Only on day 23 after running up Dunckley Pass at 9,764 feet did LaBaw pause to revel in her accomplishments. “I stopped for a minute to look back at what I had come over,” she wrote. “I could see the end of the initial 5-mile downhill followed by the pass I had just climbed. I had a moment of pride. A moment of, ‘Holy cow, I’m actually doing it.’”
A minute later, LaBaw would take the laurel wreath off her head and move forward. The last 6 miles were rough. Trucks whizzed by. She wrote: “One of my favorite quotes ever is, ‘Of all the paths you take in life, make sure some are dirt.’ Today I not only got to take a dirt path, but I got to taste it and breathe and was completely covered in it.”
The runner has a unique vantage point. Walking allows one to focus too long on a singular thing, whereas on a bike you can whiz by too fast. But when running, things become a pop-up book filled with one vibrant vignette after another. Runners really get to see an object, focus on it just long enough to absorb the important details, and then it vanishes.
Day 26 was filled with country road switchbacks with oak brush and quakies at the pinnacle of their late fall and early winter brown with touches of red. The land opened up to meadows and rolling hills practically swallowed up by mountains. Farmhouses and barns flanked both sides of the road.
“I started to dream about living on one of these ranches,” she wrote. “Living a simple, hard-working, fun-loving life.”
Finish lines for the long-distance runner aren’t that different from the bittersweet excitement of the traveler arriving at a destination. As the plane makes its descent, an early morning kind of peace calms the mind and allows the traveler to be in three places at the same time: past, present, future. In the air, time is suspended. The same thing happens when running. Only when the plane lands, when the runner crosses the finish line, does real time commence. For LaBaw, nearing the finish line allowed her time to reflect.
“My thoughts were consumed with confusion of the upcoming last two days of the run,” she wrote. “One moment I was focused on the pride and amazement that I was actually going to complete 500 miles across the Colorado Rockies. The next moment I was literally in tears that it was almost over. The next I was flooded with the honor that we were well on our way to achieving our set fundraising goal. I couldn’t turn my brain off.”
Day 30 brought mashed-potato skies. Rain here and there. But the weather gods had smiled upon LaBaw; only in the last 5 miles of her journey did it rain. She climbed through a valley of shotgun-blast reds and browns and into an ocean of naked, silver-colored aspens. The road changed from pavement to gravel. One of the great rewards of long-distance running are the profound truths discovered in the end; perspective.
“Not only am I able to witness the changing of seasons in one of the most beautiful places I’ve ever been to,” LaBaw wrote, “but I’m able to do it by foot at 6 to 7 miles per hour. The details of the blackened bark from knots on trees, the pattern of protruding roots from the bank of the road, the scatter of fallen silver leaves blanketing the ground. My appreciation for the power of nature has been magnified in the last month.”
The night before she was set to finish her run, LaBaw, friends and family camped out by a campfire. She anticipated a good night’s sleep. Hardly.
Thirty straight days of doing anything is hard. The novelty soon wore off and turned to hardship. Day 31 dawned. LaBaw stepped out of her cabin to greet the day. Cold mountain air kissed her cheeks. She took a deep gulp of the air. Exhaled. Tears followed. She stood on the porch and cast that steely gaze toward a grove of aspens that had lost the battle with Jack Frost.
“I wasn’t sure what the tears were from,” she wrote. “Happiness, pride, sadness, fear, exhaustion. Maybe a little bit of everything.”
LaBaw would run another 18.3 miles before her journey ended at the Wyoming border. Her body had been torn asunder. She had run 489 miles, burned 62,100 calories, taken 880,200 steps. She had climbed a total elevation gain of 35,000 feet and dropped 34,000 feet. LaBaw was 13 pounds lighter and had lost 4.5 inches from each thigh. She had also lost a few toenails.
The thought of the finish line (a Wyoming flag that Vaughn Zellick borrowed from a neighboring rancher and tied to a tent pole) was not enough of a spark to get her across. She was in that strange runner’s time warp that is neither past, present or future—a state of mental, physical and spiritual exhaustion when the runner’s high turns to running Purgatory. She had to go deep. She thought of all the people who had helped her along the way. That turned to introspection, back to the 8-year-old girl who was told she couldn’t do what the other kids could do because she was different.
“I thought about the embarrassment of peeing my pants in front of my friends,” she wrote. “I thought about the scary times when I was leaned over the toilet in retching attacks. I thought about the girl inside of me that is still scared to completely let go and tell the world about my epilepsy. For the first time the entire run, I decided to run for her. It felt so good. She was being freed from the pain and the fear.”
Weary and plodding forward, LaBaw told Brown, “I want my mom and dad.”
Moments later, she heard the roar of the diesel engine. She could see her father’s red truck. It pulled up beside her. Her mother was with him. This was the first time in 22 years they had been in the same vehicle.
“That made everything worth it,” she wrote. “An expectation I didn’t have. Didn’t even know was possible.”
When the Wyoming flag was 50 yards away, LaBaw paused. She asked for her parents to finish with her. With dad on the left and mom on the right, they walked hand in hand beneath the archway and to the Battle Creek Bridge in Wyoming.
“I lost it. My mom and dad and I embraced and they just held me like they had so many times as a little girl,” she said.
LaBaw ended the journey by dipping her feet in the ice-cold creek water one last time. Blood covered her toes. The toenail that had been dangling for hundreds of thousands of steps continued to dangle. She tore it off, laughing, and tossed it into the creek.
What great feat does LaBaw hope to accomplish in 2016? For starters, she wants to start a nonprofit organization to support children with epilepsy. Then, there’s another ambitious goal: “I also want to learn how to lay on the couch.”