ORLANDO, Florida—When Justin Skeesuck and his best friend, Patrick Gray, set out 8 years ago on a 35-day hike across the mountains, valleys, hills, and deserts of Spain’s 500-mile Camino de Santiago, they knew it wouldn’t be easy.
What they didn’t know was how many people—both able-bodied and disabled—they’d one day inspire with 3 little words: “I’ll Push You.”
That’s exactly what Gray, 46, said to his buddy, who uses a wheelchair, in 2014 when Skeesuck proposed doing the famous pilgrimage after watching a TV program about it. I’ll Push You eventually became the title of a 304-page book that’s sold over 60,000 copies, as well as a 100-minute documentary with more than 40,000 views on YouTube alone.
The two men, born 36 hours apart in the same hospital, were keynote speakers at the CureDuchenne 2022 Futures conference, which took place earlier this year here.
And although Skeesuck’s extremely rare condition—multifocal acquired motor axonopathy—stems not from a lack of dystrophin but rather from a car accident at age 15—his basic message of letting others help you and never losing faith resonated deeply with his audience of families touched by Duchenne muscular dystrophy.
“The connection was almost immediate, because when you have a room full of parents and kids that are dealing with tough diseases and challenging times in their lives, they get it,” Skeesuck told Rare Disease Advisor via Zoom from his home in Boise, Idaho.
“It was almost like preaching to the choir in a way. It meant a lot to be there and to know that the audience knows what I’ve been through,” he said. “Even though I don’t have Duchenne, I have a disease that does get worse over time and will eventually probably take my life at some point.”
A Message of Hope
Born and raised in eastern Oregon, Skeesuck has been paralyzed from the waist down for the last 31 years. The married father of 3, a graphic designer before the accident that changed his life, needs daily help eating, getting dressed, going to the bathroom, and getting in and out of bed.
Yet that has never stopped him from dreaming big.
“In the beginning, it was just Patrick and I wanting to do this. It was nothing, no movie, no books, nothing. It was Pat and I, 2 idiots,” he said, laughing. “I’m not an adventurer by nature. I don’t do crazy hikes. I don’t do this kind of thing. Seriously, I am more happy sitting on a beach or poolside somewhere. That’s my thing.”
The Camino de Santiago, an ancient Catholic pilgrimage that traverses some of the roughest mountain terrain of northern Spain, is extremely difficult even for those without disabilities—let alone for a paralyzed man in a wheelchair.
The route Skeesuck and Gray chose—“El Camino Francés” or the French Way—begins in the French village of St. Jean Pied de Port and crosses the Pyrenees, winding its way westward 500 miles. It ends at the tomb of the Apostle James the Elder in Santiago de Compostela.
“It is Catholic in origin, even though I’m not Catholic,” he explained. “A lot of people take the pilgrimage for many reasons. Maybe they’re going through something tough in their lives.
To be able to complete the adventure, Gray got 6 weeks of leave from his job as a healthcare administrator in Idaho—but only on the condition he and Skeesuck document their trip, which of course they did.
“As far as people helping us along the way, we literally lost count after 150 people,” Skeesuck said.
The film, released in 2017, was directed and written by Chris Karcher and Terry Parish.
“The movie and the journey, and the book, it’s literally a miracle that we even made it,” Skeesuck said. “It was a miracle that was even completed. It was a miracle that we even had the crew put together very last-minute. We almost pulled the plug a few times.”
Skeesuck’s Chief Takeaway: ‘You Can’t Do It Alone’
For Skeesuck, this moving experience of a lifetime can easily be summed up: You can’t do it alone.
“I’m speaking from my personal experience here. It’s a horrible diagnosis; there’s no way around that,” he said. “The question then becomes, how do you best maximize the time that you have? Really this is a lesson we can all take away—not just families and boys with Duchenne but everybody.”
He added: “For me, the lesson is that you need to allow people to help you in your life. When you do, you are giving them the best gift you can give them, which is absolute joy and love.”
Since that epic adventure, Skeesuck and Gray have become motivational speakers. Through their online portal, Push Inc., they offer leadership retreats, books, movies, and online courses aimed at inspiring individuals and businesses to “reach for more in the workplace, and in life.”
Hawken Miller, 25, said that as a Duchenne patient also using a wheelchair, both the movie and the presentation in Orlando had a profound emotional impact on him.
“I felt like I could see myself in Justin’s shoes and understand that feeling of being a burden on other people,” said the young journalist, whose parents, Paul and Debra Miller, established CureDuchenne in 2003, a year after their son’s diagnosis. “The thing that stuck with me the most is to be willing to ask for help. Don’t rob other people of the joy they get from helping you.”
