What It’s Like to Travel the World With Multiple Sclerosis

For Travel + Leisure’s column Traveling As, we’re talking to travelers about what it’s like to explore the world through their unique perspectives. We chatted with Robin Cohen, who has been living and traveling with multiple sclerosis, a disease that causes erosion of the nerves’ protective layers, for more than 25 years. Her indomitable spirit is the subject of the documentary short “How I Roll.” Here’s her story…

More than 25 years ago, I was on a hiking trip outside San Francisco in Sky Londa, where the redwood trees often protrude out of the ground. After a few miles, I started tripping. I was with a girlfriend who said, “Your foot is starting to drag. That’s not like you.”

When I got home, I went to the doctor and found out from neurology tests I had oligoclonal banding, which can be a sign of multiple sclerosis (MS). At first, it was strictly foot drop, and I lived with that for quite some time. But then it started developing further.

It’s kind of like a cord whose protective layer is slowly eroding. The more the wires are exposed, the more they impact communication. For me, it happens from the hips down. My legs are spastic since the neurons aren’t getting there. So, when I move my legs, it feels like I’m lifting 1,000 pounds. If I want to bend them, they don’t cooperate.

There are varying degrees of MS. I have the most severe kind, called primary progressive, which slowly gets worse over the years. Even though I’m working hard to get my mobility back, I don’t think I ever will. Every day is different, but within parameters. Some days, everything clicks to the best of my abilities; others, I’m out of sorts. I use the pool to walk, and try to mimic what I’m supposed to be doing without buoyancy. 

I started with a cane, but I couldn’t get from 51st to 52nd Street. It was hard for me to keep up with my kids. My daughter suggested I find another way because we couldn’t depend on taxis. Like most people, I was resistant to getting a scooter. I thought I would deteriorate fast by depending on a machine, but, as it turns out, it freed me. I’ve learned to be quite mobile with a scooter. I swim, do yoga, and go to the gym. For that, I’m filled with gratitude. 

It did take some time to get over the stigma. I was only about 38 years old, so it was a young time to start feeling disabled and glanced at because you’re different. Sometimes, it was just the feeling of people’s backs turned to me when I was in a restaurant where tables were tight since they didn’t want to get up and move their chairs. It takes some good balance in your mind to create a boundary of dignity.

I’ve always been a traveler. I traveled a bit on my own during college. After school, not as much, but when I met my husband, Mitch, we did again because he also enjoyed it. There was a lot of heaviness in my early years, but travel brought joy and lightness.

We went to Belize early on before it became popular. We’d go to the Festival Fringe in Scotland every August. It’s a difficult city with the hills and rocks, but the taxis are fantastic. Every single one has a slide that comes out into a ramp. I can scoot from the sidewalk right into the middle of the taxi and there are still two seats in the back.

But there are challenges, especially with flying. Most airlines are pretty accommodating. I drive my scooter to the jetway and board the plane myself. I use the sides of the plane to help. Some aircraft have a handle that comes down from the roof that I can grab to help me step out, but many do not. 

Some airlines used to save rows for those who needed special accommodations, but they don’t do it as much anymore. I do have to fight for the seat. If they’re booked, I can’t depend on others to switch since many people don’t like to. I’m lucky I’m in a place of privilege where I can select seats with extra legroom and those near a restroom, but not everyone with a disability can.

When I book hotels, I have to know it’s a handicap-friendly property. It’s harder in Europe, especially the Italian coast, because the hotels are often up and down the rocky mountains. Some have elevators down to the beach, or you don’t go to the beach. You definitely have to do the research. 

Even for restaurants, I have to check ahead if there are steps to get inside and figure out how I am getting up and down them. There’s a lot of energy that goes into planning travel and being in a city because you need to know in advance what you’re up against to make things less stressful.

Still, all my trips have been wonderful. When the kids and I went to St. Barts, we used a beach buggy and I rolled to the sand. Now, I’m over a lot of the stigma and we had the best time. In Capri, where it’s hilly, I had some young guys carry me up a flight of stairs—40 steps up a cliff. People are gracious when you’re gracious back, so there have been lots of memorable moments.  

Sometimes, I pack my scooter; other times, I don’t and use a wheelchair. I don’t let anything stop me. In China, I was limping and using a cane, and used a wheelchair for the Shanghai World Fair in 2010. I was even able to stand on the Great Wall, which was powerful for me. 

I’ve had some funny experiences, too. If I’m traveling with someone, people often don’t talk to me directly and will instead ask my companion, “Is she comfortable?” That really gets me—I’m right there.

Not long after I lost my husband, Mitch, I was on a flight to New York from Florida. I was flying by myself for the first time to see my kids. I had my carry-on and a crossbody bag. I got off the scooter, took off my crossbody bag, put it on the scooter seat, and took two steps forward to give the flight attendant my carry-on to place above my seat. When I went back to my scooter, I didn’t see my bag. The guy who looks at the jetway camera wasn’t there, so they gave me a choice: Fly this flight or stay and make a claim. 

So, I got off and filed a claim. The next day, they saw on the camera the guy behind me had scooped up my bag in his coat. Can you believe it? Right off of my scooter. The thing is, you can’t get upset—there’s no point. Gone is gone. This is why your mental attitude is important.

There are new advances, and I’d love to try new things, like skiing. I’d also love to go to Switzerland and Australia. They require longer flights, so I’m a little nervous about it.

You can’t travel without a sense of humor. To be honest, I’m very secure now with who I am. Just strolling the streets in my scooter can bring me joy, especially a new place like Paris or London. Cities excite me. 

Everyone is like, you have to be careful. But I enjoy it. Travel is like a nice bright light—it brings life and youthful energy into you.