KAILUA-KONA — Jenny Decker paddled furiously around South Point Sunday — a tiny blip on a vast horizon, bobbing amid an ocean of 10-foot swells brought to life and scale by unremitting gusts of wind that topped out at 25
KAILUA-KONA — Jenny Decker paddled furiously around South Point Sunday — a tiny blip on a vast horizon, bobbing amid an ocean of 10-foot swells brought to life and scale by unremitting gusts of wind that topped out at 25 mph.
The wind and the waves were at her back, but she could feel the violent current beneath the kayak, pulsing against her. It first threatened to push her backward, then threatened to sweep her out to sea.
“This was the one spot, it was going to make or break the trip,” Decker said. “I didn’t sleep well the night before thinking about it.”
Raging against the forces of nature is nothing new to the 31-year-old travel nurse, who landed in Kona in December of 2014. Ever since, Decker has vigorously sought adventure out rather than waiting for it to cross her path by way of happenstance. Every day she’s not working at Kona Community Hospital, she’s out exploring the ocean or traversing a hiking path.
The rounding of South Point marked day 17 of Decker’s most recent and most arduous exploit. She set out March 25 from Kona, and when she paddles back into the pier Wednesday afternoon, weather permitting, she will officially complete the first documented solo circumnavigation of the Big Island by kayak.
But Decker is battling more than an unforgiving Pacific Ocean. She is also battling time. Both of these battles are part of a larger conflict with a combatant Decker has stared down ever since she was an infant — Charcot Marie Tooth Disease, also known as CMT.
CMT is a peripheral neuropathy, meaning it affects motor and sensory nerves located outside the brain and spinal cord. Several symptoms accompany CMT, including muscle atrophy that affects motor skills and hampers a patient’s ability to walk, use his or her hands, or even speak.
A genetic disease, CMT affects roughly one in every 2,500 people, according to the National Institute of Neurological Disorders and Stroke website. Decker watched CMT gradually cripple her mother, who now moves about with the help of a walker.
Decker fights symptoms of her own, including numbing in her extremities, frequent falls, decreased dexterity in her hands and frequent pain. But Decker’s perspective on her physical hardships is unique because it’s all she’s ever known.
As a child, Decker was misdiagnosed with cerebral palsy and was unable to walk before undergoing multiple leg surgeries. As a teen taking physicals for organized sports, she had no reflexes in her lower extremities. She and her friends used to joke about her lack of coordination until Decker’s mother was diagnosed in her late 30s. It wasn’t until then that Decker realized she was similarly afflicted.
“When I’m with other people doing active things, I notice it a lot more — that I’m a little bit slower, or that I’m super uncoordinated and fall down all the time,” Decker explained. “But to me, it’s just normal. I don’t know any different. I don’t really see it as a disability.”
Decker’s quest to kayak around Hawaii’s largest island is personal, but it isn’t only about herself.
When she started mapping out her trek six months ago, Decker sought to deepen her journey by rooting it in purpose. It was her friend — Krystal Sentz, who has accompanied Decker by land since she left Kona — who suggested Decker take up her own cause. The cause of CMT.
Decker reached out to the Hereditary Neuropathy Foundation in New York, and she was sold.
“I wanted to make sure that I created awareness,” Decker said. “I work in the medical field, and no one that I work with, no one I’ve ever met, even knows what this (disease) is. No one knows, so how are we ever going to find a cure or get money for it when no one is even aware of it?”
Decker started a GoFundMe page, the benefits of which will all be donated to spread awareness and fight CMT. As of Monday, she had raised $6,859 of her $10,000 goal.
As for the logistics and cost of her kayaking feat, Decker has relied on a core group of 10 she refers to as her “ground crew” to coordinate making landfall and supply her with basic necessities. She has spent all but two nights so far camping in a tent between paddling stints.
During some of the scariest moments of the last two and a half weeks, ground crew members — or “adventure buddies,” as Decker’s friend Elizabeth Baker described them — have sweated in fear right alongside her.
“There was a 12-foot swell day that I got stuck in that was literally terrifying. The swell was so big, there was nowhere for me to get off the water,” Decker said. “Every time I’ve gotten off the water on those really bad days, (the ground crew) look just look as wiped as I do, worrying about me out there.”
But now, only two paddles away from the end of her journey, Decker can almost see the finish line. And not long after crossing it, the travel nurse will make her way off the island and on to new adventures, as her work assignment on the island concluded in March.
“I’ve had a lot of alone time to think, and every time I think about pulling into that pier, the biggest smile spreads across my face,” Decker said. “I still have the travel bug, but I will get back to the Big Island eventually. For sure.”
