Katie Ciancetta, a spinal cord injury survivor from Salem, preps for Camino pilgrimage

The Camino de Santiago is Spain’s famous pilgrimage trail, luring thousands of people from all over the world every year.

Some embark on the journey for religious or spiritual reasons, or to experience the culture and history. Some see it as a fitness challenge. Others look for peace and purpose.

For Katie Ciancetta, the why includes all the above, with emphasis on finding peace after a life-changing injury and distraction from lingering chronic pain.

“Even though I appear and seem healthy and happy and everything’s fine, there’s a lot underneath that is not,” Ciancetta said. “I have a ton of pain, and I need to come to terms with that.”

The pilgrimage once would have been considered nearly impossible for someone like Ciancetta, a spinal cord injury survivor who uses a wheelchair.

But in 2014, Justin Skeesuck demonstrated not only was it possible, but just as enlightening. He became the first person to travel the 500 miles from Saint Jean a Pied-de-Port to Santiago de Compostela in a wheelchair, with assistance from his lifelong friend Patrick Gray.

Their story, told in the award-winning book and film “I’ll Push You,” has inspired countless individuals with disabilities to pursue their dreams no matter how insurmountable they may seem.

They continue to promote inclusivity through their organization, Accessible Camino, leading two disability-friendly group trips a year on the last 100 km of the trail.

Ciancetta, who lives in West Salem, was chosen for one of this year’s coveted spots.

Her group, including five other individuals using wheelchairs, will do the Portuguese Coastal Way, June 20-25. Assisting will be 39 able-bodied people to push, pull or carry them as needed, including her husband, her son and a longtime friend.

Meet Katie and her Camino de Santiago crew

Ciancetta, pronounced Chon-chetta, sustained the spinal cord injury while sledding with her family on Dec. 31, 2018, at Santiam Sno-Park. She crashed into a tree at the bottom of an icy slope.

The impact damaged vertebrae and left her paralyzed from the chest down.

A teacher at West Salem High School at the time, she eventually returned to work part-time as an instructional mentor and then AVID coordinator. The 2022-23 school year was her last due to ongoing nerve pain.

Neuropathic pain often accompanies a spinal cord injury and is a cruel irony for those suffering from a lack of sensation.

Ciancetta was active before the injury, running the Portland Marathon, participating in the Hood to Coast and backpacking around Europe. Other than camping with the family, the Camino will be by far the most adventurous thing she has done since.

Her husband, Matt, is a math professor at Western Oregon University. They met in grad school at Portland State University and married in 2008. They will celebrate their 16th anniversary on June 28 on a train from Santiago to Barcelona as they begin their return home.

Their son, Elliot, attends Straub Middle School and is involved with cross country and track and works out at the gym.

“Yeah, we’re counting on him,” said Lupine DeSnyder, the third member of the crew.

Ciancetta met DeSnyder about 23 years ago through a Willamette Week roommate listing when DeSnyder moved to Portland. They were roommates and friends before Ciancetta met her husband.

'I'll Push You' film and book motivates others

A promotional video on Facebook about Accessible Camino caught Ciancetta’s attention two years ago.

“As soon as I saw it. I said, ‘That’s for me.’”

She discussed the idea with Matt and decided to apply. When she reposted on Facebook — asking “Who wants to help?” — DeSnyder was one of the first to respond.

Demand has been high for the trips led by Skeesuck and Gray, who are like Camino royalty since their pilgrimage 10 years ago.

The two best friends grew up together in Idaho. Skeesuck has a progressive neuromuscular disease called multifocal acquired motor axonopathy (MAMA for short) but refuses to let his condition limit his potential for adventure.

When he dreamed of doing the Camino, Gray said, “I’ll push you.”

They spent two years planning and then documented the struggles and joys of every mile of their journey. Their book and film, followed by talk show appearances and speaking engagements, motivated people to reach out to them, asking them for advice on how to make it possible for them and their friends to follow in their tracks.

At first, they provided insight informally, but then Skeesuck came up with the idea of organizing something to assist aspiring pilgrims with mobility issues. Gray doubled down, saying, “Let’s lead them.”

They launched the Accessible Camino in 2019, leading 10 individuals in wheelchairs and one visually impaired person with a pusher ratio of 3-to-1, quickly realizing twice that would be better.

Trips were postponed or canceled during the pandemic, but they relaunched in 2022 with back-to-back journeys on different routes, the same schedule as this year.

Accessible Camino draws long waitlist

Gray said the waitlist for Accessible Camino 2024 swelled to about 800 at one point, including pushers. Of the 170 who actually applied, 29 were individuals who would need assistance. Some did not qualify out of the gate for health or logistical reasons.

Skeesuck and Gray interviewed those who did qualify, including Ciancetta and her team. One of the questions they asked Ciancetta via video call last August was how willing she was to accept help.

“That’s really a thing for many of us in the disability community. Sometimes people kind of overreach with their help,” Ciancetta said. “We often are fiercely independent. I knew going into the program that was kind of the point of it.”

In some cases, the pushers will literally have to pick the person and their chair up and carry them over rocks or a stream.

Ciancetta was one of 14 selected for this season, one of six in her group.

To get wheelchair ready, she 'kind of pimped it out'

Participating in the program is a financial commitment. The Ciancettas paid about $4,000 for their part of the guided trip, which includes lodging, breakfast and dinner, and photos and video. The group organizes everything from initial transport upon arrival to support and transport between destinations.

Accessible Camino partners with a travel company based in Santiago that helps with logistics and securing accessible hotel rooms along the trail.

The cost does not include airfare or gear needed for Ciancetta’s chair.

The family held a fundraiser in April at the YMCA, showing the “I’ll Push You” documentary, and has been selling “Virtual Pusher” bandanas. They surpassed their goal, raising $11,275.

Ciancetta attended a wheelchair maintenance workshop at the Bike Farm in Portland for advice and help. The shop has a free workshop on the second Tuesday of every month in conjunction with Oregon Spinal Cord Injury Connection.

She needed to retrofit her manual chair with larger wheels, knobby tires and other equipment essential for the varied terrain they will encounter on the Camino.

“I kind of pimped it out,” she said.

The new wheels and tires will provide a smoother ride over rocky paths and roads. A Freewheel clamped to the footrest transforms it into a three-wheel all-terrain vehicle. Pushing through gravel and on uneven surfaces will be easier for her and her team.

The chair also has new push bars behind the backrest, with an aluminum plate made by a local welder for easy attachment and removal.

Strap system will help crew navigate uphill, downhill

Training is a commitment for the Camino, a challenge even for those with mobility. Increasing distances and building endurance is a must. The Portuguese route has hills, and Ciancetta and her team have been going on walks in the West Salem hills near their home and at area parks.

Posts on the crew’s Facebook page include photographs from walks at Baskett Slough Wildlife Refuge, Champoeg State Park, Graham Oaks Nature Park and Erikson Drive in Portland’s Forest Park.

The walks range from 8 to 14 miles, about the distance they expect to cover each of the six days on the trail.

The Statesman Journal caught up with Ciancetta and her crew at Orchard Heights Park, where they were perfecting a strap system to handle the hills. It is essentially a sled-pulling belt that goes around a crew member’s waist.

They head up the gentle slope of a soft trail to a field where they make a loop and encounter only minor obstacles. They lift Ciancetta over a narrow ditch and navigate a hump on a rudimentary trail. She gets a bit tilted on the latter.

“I’m trusting you Elliot,” she says to her son.

Ciancetta will be 1 of 6 captains in her group

Trust is something Ciancetta will have to have. She will be joined in her Camino group by five other participants in wheelchairs, the captains as organizers call them.

“At the end of the day, they’re in charge,” Gray said. “No one knows how to use a chair or get over an obstacle better than them. A lot of people assume they need help and know best how to help, but they are at the helm.”

The other captains are women from New York, Idaho and Minnesota, and a husband and wife from Kansas City.

Organizers aim for ratio of six pushers to those needing assistance so everyone can take breaks and enjoy the experience. The volunteers also go through an application process.

In addition to Skeesuck and Gray, the group will have five local guides, two in the front, two in the back and one in the middle. A videographer and photographer also will accompany the group, to provide images from the journey.

The group will go the Portuguese Coastal Way

The Camino de Santiago is a network of routes pilgrims have taken for centuries.

There are many starting points, all leading to Santiago de Compostela. The destination originated from a 9th century Catholic pilgrimage to pray at St. James’s bones, allegedly buried in the cathedral.

The Portuguese route follows Spain’s coastline from Vigo to Santiago de Compostela and is 100 km, the minimum distance required to receive a certificate. It leads pilgrims through quaint fishing villages and historic towns. The terrain will be varied, from Roman roads to forest paths, tracing the footsteps of countless others.

The journey is introspective for most, especially those who may never have imagined doing something so adventurous. Skeesuck and Gray will discuss the “rules” the first night the group gathers and before they hit the trial.

The mindset they hope to instill includes being open, embracing big and small moments, and trusting themselves, others and the journey.

198 people in wheelchairs completed the Camino in 2023

Ciancetta knows she will be in rare company on the trail.

The Camino is traditionally walked, but many people cycle it. A few go the sailing route. Even fewer tackle the trail using a wheelchair, although the number has doubled since 2019.

Of the more than 446,000 certificates issued during 2023 to peregrinos, or pilgrims, by the official office in Santiago de Compostela, 198 used wheelchairs.

Ciancetta is embracing the opportunity to find peace with the pain she has everywhere her body has contact with the chair.

“It feels like a cheese grater going across my skin constantly, never-ending,” she said. “If distracted, it’s easier to ignore.”

Self-hypnosis is something she learned during a clinical study and when asked to pick a place where she felt at peace and happy, Ciancetta described the beach where she and Matt got married, with the breeze and the smell of the ocean.

Her hope is the Camino “will bring more memories to take me away from that pain and distract me from that pain. The pain has robbed me of so much.”

Capi Lynn is a senior reporter for the Statesman Journal. Send comments, questions and tips to her at [email protected], and follow her work on Twitter @CapiLynn and Facebook @CapiLynnSJ.

This article originally appeared on Salem Statesman Journal: Spinal cord injury survivor to do Camino de Santiago pilgrimage