Tahoe endurance runner racing for epilepsy awareness in daughter’s honor

TAHOE CITY, Calif. — Sage Clark is an outgoing, funny 24-year-old who was born and raised at North Lake Tahoe. She is a former racer on the North Tahoe High School nordic team, and spent this past winter as a ski instructor at Tahoe Cross-Country Ski Area.

She also has epilepsy.

“Every day I worry about her,” says Sage’s mom, Jackie Clark, of Tahoma. “When will she have a seizure? Where is she going to have it? Where will she get a job? Will she have people taking care of her?”

This summer, Jackie will set out to do something about it. She is competing in the Western States Endurance Run to work for better treatment and an eventual cure for epilepsy.

Jackie Clark, 58, has been competing in long distant running events for years. Last year, she took on the big kahuna, the Western States — the world’s oldest 100-mile endurance run.

The race that starts in Valley and ends down the hill in Auburn is an incredibly grueling test of physical and mental will.

After finishing the race, she told her family “one and done.” But just for the heck of it, she put her name into the long shot lottery for the 3 percent chance of getting a spot in this year’s race.

When she “won” the right to torture herself again, she made the decision to run it for Sage.

A TOUGH ROAD

Most of the time, there are no outward signs of Sage Clark’s epilepsy. But then, sometimes her eyes start to flutter as electrical impulses in her brain initiate a series of what are known as absence seizures, which lead to a brief, sometimes unnoticed loss of consciousness.

More rarely, a series of small seizures, physical exhaustion and stress can lead to a grand mal seizure, with a loss of consciousness and body control for an extended period of time.

Sage wants to live an active life, but she can’t drive a car since a seizure can come along at any time, incapacitating her. She is a hard worker, but once in awhile she can’t make it to work due to the physical toll taken on her body from seizures.

She graduated from Chico State last fall, but it wasn’t easy. She did well during two years of community college, but then went to Cal-State Monterey.

There, the mix of medications she was using to try to halt the seizures wasn’t working. It left her in a mental fog, and without a network of family and friends nearby, she suffered with depression.

She transferred to Chico State, where her brother and several friends were there to support her. When she completed her studies at Chico, she had to be helped onto the stage on graduation day, and shortly thereafter, she had a grand mal seizure.

OVERCOMING CHALLENGES

The potential impact of a major seizure, and the brain’s tendency to go into what Sage calls a “state of drunken denial” when a major seizure is approaching, is what makes epilepsy so challenging.

“I had to get stitches twice,” Sage says. “Once, I cracked my head when I fell. Another time I dropped an industrial size container of plastic wrap on my hand.”

She’s had a couple of black eyes. She once fell off her bed and smacked her face on a chair. And then there was the time on the chairlift.

“I just wanted to do one more run and then go home,” Sage says.

She remembers being almost on the top of the lift, and next thing she knew she was on a stretcher. She started falling off the chair, and her friend, Morgan Paulson, saved her by pulling her back onto the chair, and not letting her go until they got to the top.

Sage does her best to reduce the number and severity of seizures by getting plenty of sleep and keeping her stress levels down, as her seizures increase when her brain becomes overloaded or she is exhausted.

She exercises daily and practices yoga. She also closely monitors the effect of the drugs to keep a balance between limiting the seizures and not turning into a zombie. And she has to always remember to take her medication or the effect could be catastrophic.

‘FIGHT AND ENDURE’

“Every step of my journey during Western States 100 is going to be in her honor,” says Jackie. “I will fight and endure just like she does every day of her life. More people die of epilepsy every year than from breast cancer, yet there is hardly any new advances in research.”

Perhaps part of the reason epilepsy doesn’t get enough attention is that unless you are close to someone with epilepsy, it remains unseen. Jackie is doing her part to bring the disease into the consciousness of all of us.

And she and the Clarks are getting plenty of support.

Tahoe XC Devo Coach Elyah Gordon says Sage is, “one of the coolest athletes I’ve ever coached.”

“Her attitude and enthusiasm is always uplifting — she is always a fearless charger,” Gordon said. “It always breaks my heart when I think of Sage facing this disease. I’m sure it affects her spirit, but I never see it.

“To me, she’s always fun and uplifting with great energy.”

Jackie is running to raise money for CURE — Citizens United for Research in Epilepsy. This program helps raise epilepsy awareness and provide funding for medical advances for epilepsy.

She has a goal of $5,000, and was more than halfway there as of Tuesday. Visit bit.ly/23mhXXw to learn more and to make a donation.