Pilgrimage and celebration

I bought new shoes recently. They are unlike any shoes I’ve ever bought before. They are sleek and streamlined on top, rugged with aggressive tread on the bottom, and they have high-tech elastic “speed laces” with a quick-action toggle and a nifty secret pocket on the tongue in which to hide it. The only thing ordinary about the purchase for me is that the shoes were on sale, although I would have bought them even if they weren’t.

I need these shoes because I am doing something unlike anything I’ve ever done before – something I never expected or even wanted to do.

This September, I am joining a crew of volunteers who will be supporting a young woman with a traumatic brain injury as she embarks on a pilgrimage to the shrine of the apostle James in the cathedral of Santiago de Compostela in northwestern Spain.

Jen Schuringa, 33, acquired a traumatic, catastrophic and life-changing brain injury a decade ago, when she was 24, finishing her post-secondary education and starting a new job. Driving to a cottage in the Buckhorn area for the May long weekend, Jen lost control and the vehicle went off the road and hit a tree. The airbags did not deploy.

The Phone Call

Jen’s parents, Harold and Janette Schuringa of Oakville, are among our family’s closest friends. We’ve known them since we were all teenagers. We were with them and another couple on that May long weekend, working on our five-year project to complete the Bruce Trail end-to-end. We had finished the first glorious hike of the weekend, had checked into our hotel rooms, and were getting ready to meet for a picnic potluck dinner when Harold phoned.

Jen’s sister Whitney had called. There had been a crash. A bad one. Jen was hurt. She was being airlifted to the Trauma and Neurosurgery Intensive Care Unit at St. Michael’s hospital in Toronto and Harold and Janette should go. Now.

We met in the parking lot of the hotel. Three empty-nest couples taking advantage of a newfound freedom to spend a weekend away doing something we all loved. Harold and Janette loaded their hastily gathered gear in their car, and we prayed together. We prayed for safety and sufficient calm for Harold and Janette as they sped towards Toronto and a future they could never have imagined. And we prayed for Jen – that her life would be spared.

Both those prayers were answered.

Jenny’s thriving

That was 10 years ago.

Since then, Jen, with the help of her parents, siblings and caregivers, has made remarkable gains. She can’t walk, talk, feed herself or read a book, but she has a sense of humour, a bright curiosity and fierce determination. She communicates best with her caregivers and parents, using slow blinks of her eyes or a nod with her thumb protruding from her clenched fist to answer yes or no questions and express preferences. She vocalizes – expressing pain, frustration, laughter or joy – with throaty moaning sounds. She eats pureed, high-calorie foods, meticulously researched and prepared by Janette, and she makes her caregivers laugh.

After spending three months at St. Mike’s and almost two years in various rehabilitation institutions, and enduring multiple surgeries, Jen came back to her childhood home in Oakville where her parents had turned their living room into a hospital room, filled their dining room with appliances and physiotherapy equipment, their cupboards with medical supplies, and their lives scheduling the 24-hour-a-day care their daughter would need to thrive.

Jen’s job is to stay strong and flexible. Her muscles contract with spasms, her inability to balance herself means she can’t do weight-bearing exercises, and her body is often wracked with pain. For Harold and Janette to be able to continue caring for her at home, Jen needs to be able to bear enough weight so she can be transferred from her bed to her wheelchair, from her wheelchair to the commode. Her personal trainer, Bettie VanGils Kloet, comes two times a week for flexibility and strengthening exercise, and provides instructions for Jen’s workouts the days she’s not there. She gets regular visits from a massage therapist. A speech therapist comes to help form her mouth and tongue to relearn speech. Personal support workers rotate shifts through day and night, helping with personal care or turning Jen over at night so she doesn’t develop bed sores.

One of the pieces of physiotherapy equipment in the Schuringa dining room is a sit-to-stand machine, and another is a stationary bicycle that Jen can pedal from a seated position in her wheelchair. There are floor mats and a balance ball. Jen works hard and has progress to show for it. She participates in an online social group with other brain injury and stroke patients. She goes to a riding stable for equine therapy, she goes to art galleries and museums, and she loves the company of family and friends.

Harold and Janette know that this lifestyle is not sustainable. As they age, Jen’s care will become harder and harder for them to manage. They know that soon they will need to make a plan that will provide for Jen when they can no longer do it.

A bucket list

But first, they have a more audacious idea.

As avid hikers and travelers, they have continued to spend their precious vacation time – a week here, an overnight there, often vacationing separately because respite caregivers are so hard to find – returning to the Bruce Trail and other trails across Canada and around the globe, for solace and rejuvenation. They understand the value of being outside and on the move, and they have felt the healing of mind and spirit that comes when you are simply putting one foot in front of the other, sometimes in conversation, sometimes in companionable silence. That’s why, for Janette, the 800-kilometre pilgrimage that starts in France and ends in Spain, known as the Camino de Santiago de Compostela, or The Way of St. James, has been on her list of possible hikes for decades.

When Harold, Janette and Jen watched the 2017 film I’ll Push You, featuring the Camino journey of paraplegic Justin Skeesuck and his muscular and determined friend Patrick Gray, an idea was born. Partly for inspiration, and mostly for reward, they broached the subject of doing the Camino with Jen. With a blink of her eye and a nod with her fist, Jen said yes, and an outrageous, impossible and glorious idea was born. If she continued to work hard, and with the help of many friends, Jen would do the Camino.

Who, me?

I’m not a keeper of bucket lists. I am just as happy hiking at a conservation area close to my house as I am flying to an exotic location to travel along windswept cliffs or climb must-see mountains. Climbing Kilimanjaro or doing the Camino are almost clichés for me. If everyone wants to do it, I don’t. I don’t like flying that much; I’d rather sleep in my own bed or my tent if I’m on the road. But Harold and Janette have been good friends for a long time, so when they asked, my husband and I said yes too.

So we’ve been practicing with Jen and her high-tech stroller-jogger, taking turns pushing, pulling and swatting mosquitoes. Sometimes my husband wears a harness to pull the jogger up hills. Sometimes he wears the harness behind, preventing Jen from careening downhill out of control. But I’m not that strong and Jen could probably pull ME down the hill. Yet the whole idea of travelling across the ocean to participate in something so extravagant initially seemed excessive and wasteful.

But then, early this spring, an amazing thing happened.

Jen was outside in the cul de sac where she lives, in a new recumbent trike, something that had been ordered on a whim, because she had been doing such good work with the stationary bike in the dining room.

She was with her parents and a personal support worker.

Slowly, slowly, with one careful rotation after another and a grin on her face, Jen was propelling herself forward. For the first time in a decade, Jen was moving herself! Watching the video clip – something I’ve done dozens of times since Janette first shared it – brings me to tears every time.

Not only can Jen finally move herself, the time she spends on the trike is restorative. She delights in being outdoors, feeling the sun on her face and the wind in her hair. After a ride, Jen is more relaxed, her muscles less contracted. There is joy on her face. On that first day in April, she cycled one kilometer. After only a few months of training, she is up to 5K. Suddenly, the trip to Spain is not about pushing or pulling Jen on the trail, it’s a question of how we’ll keep up with her! A new plan has developed to ship both her jogger and her trike to Spain, and a new route with a combination of cycling and pushing time is being mapped out.

And that’s why I need new shoes. I have hiking boots, but I can’t run in them. I needed something sleeker and more light-weight because Jen on the trike is fast.

Jen won’t do the whole Camino, and my husband and I will only be there for the first two weeks. In total, a crew of 15 people, some for a month and others rotating in and out for one or two-week stints, are volunteering to make this happen. The actual trail sections were selected by Janette, chosen for their points of interest, terrain and proximity to accessible accommodations.

A physical and spiritual journey

The Camino de Santiago originated as a spiritual pilgrimage to a religious relic and has since become a global phenomenon, with hundreds of thousands of people completing it each year (CC columnist Katie Munnik wrote about her family’s Camino experience in July) . For Jen and her crew, the Camino is both a challenge and a celebration.

It’s also a motivator for Jen’s daily work. “When you can’t leave your bedroom for 10 years, the opportunity to get out there is both a challenge and motivator,” Harold said. “Back when she was able-bodied, Jen loved to travel. Well, we will do it a different way.”

A spirit of peace

But this endeavor also has a spiritual motivation. For the first three years after the crash, Harold says they felt burdened by the trauma and losses they had experienced. “We just wished it would all go away and we would die and go to heaven and start over,” he recalls. “That started us on a negative downward spiral, and we started thinking about death.”

Around that time, Harold had a vivid vision of the story in Luke 13, where a vineyard owner instructs a worker to cut down a fig tree that has not borne fruit for three years. But the vineyard worker says, no. “Leave it alone for one more year, and I’ll dig around it and fertilize it.”
They invited a leader of healing prayer to meet and pray with them. But instead of the physical healing they sought, the prayer sessions resulted in spiritual healing. “It was a casting out of the trauma and of the spirit of death” that had overtaken them, Harold said. “The spirit of trauma was replaced by a spirit of peace.”

Since then, “we have had a lot of joy in our daily lives,” said Janette.

“Jen started to smile,” Harold said. “Joy came out of her. Peace replaced the desire to die.”

Seven years after that significant spiritual healing, Harold, Janette and Jen also see this pilgrimage as “a way to give thanks, for seven years of peace and growth that we didn’t expect,” Harold said.

“This is an opportunity for us to tell the story of Jesus and faithfulness.”