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Not Alone Anymore

By: Kyle "Rescue" Wagner

When the plane landed in her hometown of Guelph, Ontario, after she’d just spent a week rock climbing on a First Descents program for participants with an MS diagnosis in Estes Park, Colorado, the first call Lauren “Caribou” Sneyd made wasn’t to her husband, Adam.

She called her good friend, Nina Denniston, who also has MS.

“I said, ‘You have got to get on one of these adventures,’” Caribou shares. “I told her to apply soon as possible, because there is a whole community out there that can support you. I told her it would change her life.”

Caribou herself had heard about First Descents from an MS newsletter she subscribed to called “FUMS,” but she says she was initially skeptical. 

“I was like, no way. NO WAY!” she says. “At first I thought, this can’t be a real thing, that you can do this free trip to an amazing place with other people who have your diagnosis. It sounded too good to be true!”

She decided to suspend her disbelief and apply anyway — but then it turned out that all of the programs were full. But she kept trying.

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In the meantime, she and her husband continued to spend as much free time outdoors as possible, modeling the Out Living It lifestyle. “We were camping on Lake Superior when I got the call,” she remembers. “There was a last-minute cancellation, and so I was told that I could have the spot if I could make it work and get there in … two weeks.”

She didn’t hesitate. “I immediately right there told my husband, ‘I’m going to Colorado to go rock climbing with a bunch of strangers my age who have MS,’” she says. “And he immediately said, ‘Go!’”

At that point, it had been nearly eight years since Caribou had been diagnosed with relapsing-remitting multiple sclerosis at the age of 32. “I’d had a bunch of random symptoms, and went to the doctor, who referred me to a neurologist, who was like, ‘Nope, you don’t have MS, you’re all good, you’re fine,’” she says. “So I just went back to living my life.”

More specifically, she went to Cameroon, in West Central Africa, to continue doing fieldwork and coursework for a dissertation on food security for her PhD in human geography and international development studies. After successfully defending it, “I was flying high,” she says.

The tests that led to an MS diagnosis

But something was wrong – she had suddenly gone blind in her left eye and had to be driven to the hospital, where they quickly referred her to an emergency ophthalmologist. “He asked me if my feet hurt, and I was like, huh, yeah they do, but that’s not what’s important,” she says. “I wanted them to focus on my eye. But it turns out that optic neuritis is one of the early signs of an MS diagnosis, and so he gave me high-dose steroids with an IV, but told me I needed an MRI.”

She also needed a spinal tap and an “evoked potential test” — which measures the speed of the messages along your sensory nerves to your brain — both of which confirmed the diagnosis. “Right away I was started on disease-modifying therapy, with a twice-a-day pill regimen, which worked for me for a couple of years,” she says. “Then I had a little relapse, which affected the C3 [spinal nerve] in my neck, which is connected to the diaphragm. I was having trouble breathing.”

Since then, she’s been receiving a monthly infusion, which has been successfully managing her symptoms for nearly two years — which meant she was able to revisit some of the outdoor activities she had enjoyed before her diagnosis.

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“My mom is a teacher, and so we could go to my family cottage in the summers, and we could swim, and then as we got older, we learned how to rappel,” Caribou says. “We had a family friend who was an Army Ranger, and he came up and taught us how to rappel, and that really inspired me to try rock climbing in my late teens and early twenties. So I had my own climbing shoes and everything, and I’d been doing it, but then grad school happened and life kept going, and I just stopped doing it.”

She adds, “So when this trip came up, I thought, ‘Well, I haven’t gone rock climbing in almost 20 years,’ but it was really important for me to see if the new me, the one with MS, would still be able to do it.” 

Caribou explains that in those years after you get an MS diagnosis, “you’re just kind of building back up again, your strength and endurance and cardio. I had fallen down a lot, and you have a lot of scary moments at first where you’re like, okay, so this is what it’s all about, going for a jog and coming home with a concussion, and covered in road rash on every single limb, even on my face, from falling.”

On the last day in Estes Park, on the famous feature known as The Thumb, Caribou says she knew she could do it, but she was still nervous: “Could I trust my legs?” she wondered. “MS takes so much from you, and so it was so important to me to see what I hadn’t lost. And then all of these people, these new friends, were cheering me on, yelling ‘Caribou!’ And then I knew I was going to be okay.”

Deal-with-MS

It’s easy to imagine that the nickname Caribou was somehow Canada-inspired, but it actually has a more specific meaning for her. “Up until we were about to head out on our first climbing day, I had three different nicknames,” she says. “Everyone else had their nickname right away; people were walking in the first day like, ‘Hey, I’m Sticky,’ or ‘Deep Dish,’ and I was like, oh man, what will mine be?”

The next morning, though, during the ice-breaker with the climbing instructors, the prompt was what kind of animal you would like to be for the day and why. “And I said, I’d be a caribou, because now I’ve found my herd,” she says. And she had also found her nickname.

Before joining her First Descents program, Caribou explains, “I knew only one other person with MS, and for seven or eight years, that was kind of sad, because that was the only person I could check in with about this experience. And I was very grateful for that person, so that’s why when I got off the plane from Denver, I didn’t call my husband, I called Nina.”

Her husband now says that for about the first five years, Caribou thought she was going to die. “I know that I wasn’t really, but you still get that feeling of doom. And I’d been feeling such isolation with my MS, and I kept thinking, ‘Okay, I need to do something about that.’”

Connecting and keeping in touch with her herd

One of the best parts about her FD program was that she started thinking less and less about her MS diagnosis and more about “how awesome and great everyone was, and cheering them on. And I really liked that little community of friends and people. It’s so amazing.”

“So I went from just having that one person that I knew with MS to, now I know 13, and actually, 13 is my lucky number.”

Caribou shares that she and her 13 other new FD friends have a WhatsApp group that continues to stay in touch multiple times a week. 

“We’ve had video calls,” she says. “It’s really nice because, you’re checking in, you’re getting perspectives on things like meds, or is this a side effect, or is this the disease or is it just me? It’s like we just continued those campfire talks.”

Sometimes they talk about things that people who haven’t received an MS diagnosis wouldn’t understand, like nutritional needs, sleep issues, and bladder and bowel problems. “I got a manicure for the first time in about 20 years, and I told the group, ‘Okay, so she’s working on my toes, and I had a nerve zinger down my leg. I’m trying not to kick her.'”

Caribou says that one of the fellow participants from the program, Just Linda, then told her, “If you’re gonna get manicures and pedicures, you gotta go with the same person every time so she knows what’s going on. And I was like, ‘Oh, that’s really good tip.’”

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And that’s what she most treasures about her new herd: “We had people on the trip who had been diagnosed within a year, and then we had people like Just Linda who were 20 years in. So there was such a range of perspectives and advice and knowledge.”

She’s been trying to get out rock climbing again (“There’s a gym seven minutes from my house”), but her work schedule has made it tough. “It’s a goal, though, I promise.”

“What would I say about going on a First Descents program? Join for the community,” she says. “Even if you’re worried about your ability or your comfort level or whatever, join to meet and talk to people who know what you’re going through, and then you’ll get that feeling like you’re not alone anymore.”

As for Nina, that friend Caribou called from the airport? The newly nicknamed Midnight took Caribou’s advice – she went surfing in Outer Banks, N.C., with First Descents this past May.

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