I Was an Avid Hiker Until My MS Diagnosis: Here’s How I Still Get Outside 

3000m elevation in the Canadian Rockies isn’t the best place to suddenly experience temporary paralysis of the legs. But this was Saul’s first signs of multiple sclerosis. A few years down the track, he shares how he’s navigating his love for the outdoors around the disease. 

First of all, I owe it to Mother Nature. If she wasn’t so darn beautiful, it might’ve taken a while longer to figure out I had multiple sclerosis (MS). I’m confident most people have heard the term, but perhaps not everyone is as well acquainted as those of us with the disease.

Imagine the immune system in someone with MS is Pac-Man, and the dots he gobbles up are the protective coating on the central nervous system (CNS). Only with MS, you don’t gain points the more dots you gobble up, the protective coating gets munched away until the signals travelling along the CNS slow down or stop entirely. Your brain loses connection with your body. What that can lead to outside of your body is losing connection to hobbies and people that make life what it is.

That day on Mount Rundle in the Rockies was the first obvious sign of a fault in my body’s wiring. The link between my brain and legs was playing up. I was still a few years away from a diagnosis at that point, which in my experience is the worst part of living with MS, when weird things happen to your body, and you haven’t the faintest idea of what the heck is behind it all.

How’s this for a spot to get paralysis?

To be fair, the view from up there on top of Rundle was pretty spectacular, and although calling for a rescue chopper did cross my mind, my stubbornness won and we made it back to town in time for a few cold ones at the bar – albeit walking like I had concrete strapped to my feet.

Since then, my face became paralysed for six weeks, my bladder has stopped working entirely, my legs struggle after a few kilometres of exertion, and my bowels are slower than my 30-year-old Land Cruiser going up a long, gradual hill. All these issues well and truly challenged my resolve and forced me to reassess how I navigate an outdoorsy life.

This is the stuff I used to climb, even solo

Growing Up in the 90s on a Remote Island off the Coast of Patagonia

The Falkland Islands are untamed and beautiful. As a kid, there wasn’t much else to do but muck around outside. It’s a peaceful place and very safe – exploring the outdoors from an early age is something we all learnt to love.

Amongst the King Penguins at Volunteer Point, Falkland Islands | Photo by Maddy Carney

Sometimes on foot, other times in my Dad’s rusty old Suzuki 4WD, where mud would spatter us through the hole in the floor.

This upbringing explains why I’ve always been passionate about exploring new places, particularly in a 4WD. I often remember that feeling of true freedom when I first hit the road in America, Canada, and later down the track, in Australia. Open road ahead, not a care in the world.

Wide open roads at Razorback Lookout, Flinders Ranges, SA

The Importance of Community

My first couple of years in Australia were a rocky time. Less exploring nature and more navigating a diagnosis of MS, during the pandemic, whilst also battling Australia’s migration policy on people with MS. The situation was hardly conducive to the outdoorsy life we Explorers hope for.

Something extremely positive I took from that difficult time was how supportive the people in my life are, even those I hadn’t connected with in a long time. Collectively, we raised over $20,000 for MS charities by strapping on the runners and getting out there.

Bizarrely, the thought of the world opening up again was kinda daunting in some ways. I’d have some new challenges to overcome, and some serious reassessment to do on how to spend my free time doing the things I love. But to keep that internal fire stoked, I had to make it work.

MS and Travelling Aren’t Great Buddies

Getting into the nitty gritty here, but one of the more challenging symptoms of MS for me, is having to use disposable catheters to empty my bladder. The signals between my brain and bladder are long gone. For lack of a better term, I can’t empty the tank without some invasive intervention.

The logistical challenge of taking enough catheters (plus spares) for however many times I’ll need to empty the tank over the course of however many days is really restricting. It’s not something you want to think about anytime in your life, let alone your late 20s. The thought of having to do this ‘procedure’ in the bush, around other people, was enough to drain the excitement about going on any trips.

A multi-day group hike is probably not on the cards for me at the moment

BYO Basecamp

It adds another layer to travel prep, but there was no getting around this one. It was either live a life that I didn’t align with or figure out a way to enjoy the outdoors with my newfound obstacles.

At this moment, my mobility is mostly unimpaired, up until a few kilometres and some elevation gain – then the ol’ concrete feet come back. It’s been a learning curve, and I’m still figuring it out, but the way I enjoy the outdoors now has changed.

No longer am I setting off on long hikes with a tonne of camera gear, some snacks, and a total disregard for having reliable communications.

4WDs and a Like-Minded Community

My partner and I stumbled across a community of people who loved the outdoors too, who enjoyed it in a way that was conducive to exploring with a few handicaps.

It’s hella good fun. And it means I can pack (and take home) the medical supplies I need, venture beyond the beautiful places I would’ve otherwise experienced on foot (pre MS), whilst doing it all with people whose company is always a blast.

The crew remote camping in High Country, Victoria

Our group chat is named after our preferred UHF channel – Channel 68 – and when it lights up with photos of new mods to our vintage Toyotas and plans for the next trip, it really pulls us all through the working week.

A Curse and a Blessing

MS has been a curse and a blessing at the same time. Without it, I no doubt would’ve put more miles on my hiking boots, said yes to more social invitations, and this new chapter of life in Australia would’ve been less of a double black diamond High Country track, i.e. very bloody difficult. But then again, I might not have been as motivated to find this community.

Like many of the Explorers out there, I escape to the outdoors to recharge my batteries, play music with my friends, leave behind the parts of daily life we need a break from once in a while, and bank up some stories for future campfire sessions. Everyone has their own challenges to overcome, and when it comes to MS, everyone’s experiences are different. But this is mine, and I encourage everyone to find their Channel 68.

So although I won’t be setting off on spontaneous backpacking trips across Europe or the Americas, being so unprepared that I’m sleeping at a sketchy bus stop, I’ve honed in on a way to adventure that works for my circumstances. It involves firing up the 4WD, engaging 4-low, spending nights around the campfire, and slowly but surely testing every country pub’s parma in Victoria on the journeys home. And we are, as they say, giving it a red hot crack.

This. This is the moment that I live for now

Don’t Let it Take Your Identity

I’m by no means an expert on the topic, but I have some lived experience in navigating a chronic disease that challenges your sense of self.

It’ll take time and some adjustments, but you’ll be glad you had the courage to try to make it work. And of course, try the parma at the country pub.

Who said adventure is limited to where your legs can take you?