Justin Skeesuck was the first person in a wheelchair to complete the entire Camino Frances, a 500 mile trek across northern Spain. Unable to use his legs or arms, the 38-year-old could not have completed the journey without his best friend Patrick, or the help of many strangers. Scope’s Campaigns and Communications Officer met the best friends while walking the Camino. We’re republishing the story here as part of our 100 days, 100 stories campaign.
The sun was scorching as I trudged up a steep road with vineyards and valleys on either side. Up ahead I could see some fellow pilgrims, who were moving a bit slower than I was. When I reached them I could see why – one man was in a large off-road wheelchair and the other was pushing him.
Patrick and Justin asked if I’d pull one of the wheelchair’s handles to help get them over the hill. Just this little bit of extra help made a big difference to the visible strain Patrick was under. The road turned into an uphill dirt path strewn with large rocks – so the tactics changed.
I strapped myself into a harness to help pull the wheelchair from the front, while Patrick pushed. We moved along like this for the next hour or so, manoeuvring around large rocks and stopping every couple of minutes so Patrick could rest, and drink or eat something to keep going – he was burning around 10,000 calories a day.
The call to adventure
For more than 1,000 years pilgrims have made the journey through the Pyrenees in France and across Spain to reach the Cathedral of Santiago de Compostela in Galicia. In medieval times the Camino was an important Christian pilgrimage. Today, hundreds of thousands of people make the journey each year for a range of reasons.
Justin was inspired to do the Camino after watching a travel show about the route: “Something inside kind of said this is something I should try, and wouldn’t that be crazy to do in my wheelchair?”
Justin taped the programme, and a few weeks later showed it to Patrick, who said “I’ll push you”.
It took a year for the friends to plan the journey. They had a special wheelchair made and sent over from Canada, and Patrick trained intensely in the gym to prepare to push his friend 500 miles.
Justin has a a rare progressive autoimmune / neuromuscular disease called multifocal acquired motor axonopathy – known as MAMA for short. Justin was an athletic 16-year-old when a car accident triggered the disease, which had been dormant in his body. About eight months after the accident, his left foot started flopping around while playing football.
“It just kept getting worse as months went on; then years went on”, Justin explains. “My foot started flopping around a lot more, (then) I started having weakness in my left leg.”
“By the time I got to college, (the disease) had jumped to my right foot, and I was wearing what are called ‘drop foot braces’ – they helped keep me vertical, so I wore them for many years. And it pretty much stayed to my waist and below, and then I got married and started having children.”
As the disease progressed, Justin added a cane, a walker and eventually needed a manual wheelchair to get around. Four years ago Justin was just getting used to his chair, when the disease jumped to his right shoulder. In just 40 days it spread down his right arm, then down his left: “I lost about 60-70 per cent of my arm strength, and that’s when my life really changed”.
A dark place
“I’m really a half glass full guy. I tend to enjoy life as much as possible, but that was the first time in my life where it was not where I wanted to go. Fortunately I didn’t go there.
“I decided that OK, if this is the way my life is going to be, then I’m gonna make the best of it.”
Justin had been a graphic designer for many years, but losing the use of his arms spurred a career change to become a disability travel consultant
He’s travelled extensively with his wife and three kids, even moving the family to Italy for three months last year. But the Camino has been a different kind of challenge.
Learning to let go
“When you travel with a disability you end up wanting to control things quite a bit – or at least know your parameters”, says Justin.
“But in this case it’s completely the opposite.”
“Working together with Patrick as a unit, I’ve learned a lot about letting go and seeing where the path takes me, and not being so controlled.
“I don’t even know where I’m staying every night, I’ve got no idea if I’ll fit, and I’ve no idea where I’m going to eat. I have no bathroom commode. I have no extra wheelchair for difficult spaces. It’s just me, my bag, and this off-road wheelchair. So I’ve learned a lot about seeing where life takes you if you’re open to it.
“It’s one thing to see your best friend day after day, inch after inch, mile after mile, just slugging to get you from point A to point B.
“But to meet people from all over the world who are just willing to come in and say ‘yeah I’ll push you for a mile or two’ or whatever they want to do, it’s humbling. Some people just come in like a flash in the pan, they’ll help me get up this (hill), and off they’ll go. And some people will stay with us for a week or two.
“It’s truly amazing to see it from the seat that I’m in, to see humanity at its greatest. If you open your heart and your mind and your soul to letting other people in, even for a brief moment, it’s truly amazing.”
The end of The Way
Justin and Patrick completed the 500 mile Camino in 35 days, and were greeted at the Cathedral de Santiago by their wives and a huge group of pilgrims they’d met along the way.
And check out Justin’s tips for disabled travellers.