Clumsy Girl Travels - with Marika Devin

Episode Transcript

Announcer:  Welcome to "You First," the Disability Rights Florida podcast.

Keith Casebonne:  Welcome back to the You First podcast. I'm Keith Casebonne. Today I'll be chatting with Marika Devin, who runs the Clumsy Girl Travels website and blog. Marika is a fun person with unique insights into travel and disability. I hope you enjoy our conversation today.

If you haven't already, please be sure to subscribe to the You First podcast. We strive to bring you a new episode each month, and you don't want to miss them. We're on Apple Podcast. Stitcher, Google Podcast, and now, Amazon Podcast.

Find us on your platform of choice and subscribe today. You can also always find us at disabilityrightsflorida.org/podcast. Now, here's Marika.

Hey, Marika. Thanks for being our guest today. Tell us a little bit about yourself and why you started the blog.

Marika Devin:  I started Clumsy Girl Travels because I wanted to give people who did have limitations a voice, because I felt like there wasn't a lot of representation for people who have disabilities to travel. I wanted to be that person to help people see the world, and do it safely and accessibly.

My disability is ataxia. It's a degenerative neurological condition. Most of my symptoms mimic that of being drunk. I get tremors. I have very bad balance and fine motor issues. That definitely makes traveling a bit more complicated, but I make it work.

Keith:  Besides the ataxia, I was reading on your blog that you also get really bad migraines, which affect things too.

Marika:  My migraines, I describe them as being hit on the head with a hammer multiple times. It's very, very painful.

Usually, when I get a migraine, I have to lay down. They last from five hours to an entire day. I have to lay down, and I won't be able to be woken up until my migraine passes, which makes traveling complicated, because the symptoms that caused my migraines are heat and stress, and with traveling there's a lot of stress.

Keith:  Yes, definitely. [laughs]

Marika:  And with heat...For example, I was in Colombia a few years ago. I was traveling by myself. On my second day, I got a horrible migraine. It was bad. I did a coffee tour in the morning, and then I was going to do a food tour in the afternoon.

Right before the food tour started, I got such a bad migraine that I was about to pass out. I told the guy that I had to leave. He let me reschedule to do the food tour another day, but I had to leave and go back to my hostel because [laughs] I couldn't do anything.

I was lying in my hostel bed for an entire day with my portable fan up on my face, and trying to cool down. There was no AC, and it was 90 degrees. My roommates actually, the next morning they're like, "We thought you were dead. Are you OK?"

[laughter]

Marika:  I was passed out. I couldn't move.

Keith:  You were misdiagnosed originally, right? You were diagnosed as having epilepsy, and it wasn't until you're an adult that you found out you have ataxia. You mentioned how getting that diagnosis changed your life.

Marika:  My entire life was filled with a neurology appointments. When I was three, I think two or three, I was diagnosed with epilepsy, and so I saw neurologists my whole life. They constantly would put me on epilepsy drugs, and I even did the ketogenic diet, which is supposed to stop seizures.

Then, when I was 18 or 19, my neurologist I had at the time said he didn't think I had epilepsy. He sent me and my mom to a clinic that specialized in migraines because that's what they thought was epileptic were my migraines. The migraine clinic then sent me to another part of the hospital to do some tests. They did those tests.

A week after I got those tests done, they called and told me I had episodic ataxia type 2. Of course, me and my mom had no idea what that was. Our first thought was, is it fatal? Am I going to die from this? The doctor said it's not, which made us happy, obviously. [laughs]

He did say that it is degenerative, and so my quality of life in the future could be affected. My symptoms could get a lot worse. Many people who do have ataxia have it a lot worse than I do. I'm very fortunate that I have a very rare type of ataxia.

Therefore, my symptoms aren't obvious to people. No one knows I have a disability unless I say something. We ended up doing so much research, and joining different ataxia groups, and getting as much information as we could. I have noticed my symptoms have gotten a little bit worse, but nothing too extreme.

Eventually, they said, I could end up in a wheelchair, having to use a walker, but so far I am OK. I did buy a cane though, just in case, because sometimes my balance does get bad in the mornings.

Keith:  Let's talk a little bit about some of your travel experiences and how being an individual with a hidden disability played a part in that.

Marika:  I have a few stories. Another story in Colombia. Colombia is a very adventurous type place. A lot of adrenaline junkies go there to do these intense hikes and all that stuff. Obviously, hiking ‑‑ I'm not very good at it or I can't do it because of my balance. There are certain hikes that I [laughs] want to do.

In Colombia, there was one hike where it was known for having the biggest palm trees in the world, and so I wanted to see them. I thought I had to do this huge hike to go see them, which is five hours round trip. That hike was really difficult. There were a lot of rocks. It was very bumpy.

I remember crawling certain parts of it, trying to get somewhere where I could walk. [laughs] I realized at the end of the hike, to see the palm trees, I didn't have to do the hike. I could have gone the other way, the opposite way. I would have been able to see them fine.

Keith:  [laughs] But then you wouldn't have this story.

Marika:  Exactly. I have this story to share. [laughs] Another time, when I was in...I have a lot of Columbia stories.

[laughter]

Marika:  Another time, when I was in Colombia, I was on a boat. Moving boats are difficult for me. We were docked, and I needed to get off. I kept falling over, and so I needed five people to help me off this boat. [laughs] It was me being carried by these five guys, trying to get me off this boat. [laughs] It was very amusing.

I have another story. In Greece, when me and my friend did a boat tour, we decided to have some food on the boat. They had a whole little cafeteria‑type restaurant. We got our trays and everything on our trays. We were walking back to our table. I lost my balance and everything on my tray went flying everywhere. It was a huge mess.

I was mortified and made the loudest noise. It's pretty crazy. A lot of these stories are about me being clumsy. [laughs]

Keith:  You mentioned that the anxiety from travel can also trigger migraines, and you told us about the story there in Colombia. When it comes to planning your travel, how do you go about doing that? I imagine you do a lot of research. You maybe even have ruled out destinations.

Marika:  I do have to meticulously research the destinations I go to. When it comes to playing it by ear, that doesn't work for me. For starters, I don't drive, and so I have to go somewhere where they have good public transportation or I have to take a tour.

Then I have to make sure that there's things I can do in the country. I would love to go to Rwanda and do the gorilla tracking. That's on my bucket list, but I've been having to research wheelchair‑accessible gorilla tracking.

I think that's the only way I'd be able to do it is a wheelchair accessible tour, even though I'm not in a wheelchair. With the wheelchair, they can't go too deep into the forest. That's something I'd love to do, but I don't know if it's possible.

I spend probably weeks on planning one trip to see if it's accessible, if I'd be able to easily get around, and I'd be able to do things.

Keith:  You look into the accessibility or the maybe the accommodations that you might need beforehand. There's an interesting story on the site where you talked about a bike tour in Thailand. Your solution for participating in that was that you used I think it was a tuk‑tuk, was it called, instead?

One, am I even saying that right? Two, what is it tuk‑tuk, and how did that even come about?

Marika:  I used to do a lot of guided tours when I started traveling. It was a way my mom felt good about me going by myself, [laughs] as long as I was with a group of people. A lot of these tours have included activities, and one popular included activity is always a bike tour.

I tend to get embarrassed to tell anyone that I can't ride a bike because it's something everyone learns when they're four. [laughs] This tour everyone was getting their bikes and getting ready, and so I'm like, "OK, I can't get on this bike, and everyone will know I can't ride one, anyway." [laughs]

I ended up telling the tour guide that I couldn't ride a bike and if there is an alternative way I could join everyone? He called me a tuk‑tuk. I followed the tour, and went to all the places they went to. Tuk‑tuks are like taxis. [laughs] It's like a bike, but you're being pulled in a carriage behind the bike.

Keith:  Sounds almost similar to a rickshaw, maybe or something like that.

Marika:  Yeah, it's very similar to a rickshaw.

Keith:  Then of course, you got to do the tour. That's perfect.

Marika:  I've been to 52 countries now. That was my plan ‑‑ to do 50 before I was 30. Now I'm 30, so [laughs] I can cross that off my list.

A few years ago, I was visiting Reykjavik. I was there for 10 days. I love to research what food there is to get in whatever destination I'm visiting. One of the things that popped up was...I can't pronounce the name, but it was essentially a lamb's head. [laughs]

Keith:  Oh, wow. I think that's all you have to say, "Lamb's head," but go ahead.

[laughter]

Marika:  The lamb's head, the only place I could get it was at the bus station in Reykjavik, at their cafe, which sounds very sketchy.

Keith:  Bus‑station lamb's head sounds even better.

[laughter]

Marika:  I'm like, "OK, I'm going to do it." Reykjavik's very safe, so I wasn't too worried about that. The bus station is super nice. For a bus station, at least.

[laughter]

Marika:  I go there, and I ordered this lamb's head. It gets served to me. It's exactly what it was advertised as ‑‑ a lamb's head. [laughs] I'm like, "What am I thinking? Why am I eating this?"

[laughter]

Marika:  I text the picture to my brother, and he's like, "That's something the mafia might send you to scare you or something."

[laughter]

Marika:  I'm like, "Yeah, that definitely looks like it." [laughs]

Keith:  Did you enjoy it, though? Was it good?

Marika:  It was good. It was very tender. I don't know if I would get it again. Maybe I would, if I was at the bus station in Reykjavik. [laughs]

Keith:  You happen to find yourself there again.

Marika:  Yeah, exactly. [laughs]

Keith:  You've also got some travel guides on the site and some resources for people with disabilities when it comes to traveling. What are some of your biggest or best tips that you would give to others with disabilities, hidden or otherwise, for when they travel?

Marika:  I have found that preboarding at the airport has helped me a lot. I don't know what the rules are internationally, so I don't always preboard when I'm out of the States. Within the States, preboarding has helped me.

I had an experience when I was 12 where I was boarding the flight with my mom, and I bumped into a flight attendant who was carrying a tray of drinks, and she almost spilled them everywhere. That experience kind of traumatized me. [laughs]

Now I try and preboard as much as possible. They don't ask what my disability is because I don't think, at least in the States, they're allowed to. It definitely helps me to preboard.

Then, I'd say doing a lot of research. Figuring out what your limitations are and planning your trip based around that, and figuring out what places will be able to accommodate you and your needs.

Keith:  How are you dealing with the pandemic right now, and the ability to not do the thing that you love to do so much?

Marika:  It's been hard. I've been stuck inside since March. I'm waiting for the day when life can go back to normal. I want to travel. I'm so eager to travel again.

Keith:  I bet. You do have an interesting feature on your blog though, the virtual travel guides that you have up right now. People can travel vicariously [laughs] through your experiences and through the website.

Do you have plans...Well, maybe not like formal travel plans made, but do you know where your next destination is going to be?

Marika:  I want to check out Japan. I've always wanted to go to Japan. I heard it's a really easy country to get around. I'd love to go to the Caribbean and Mexico as well.

Keith:  You've done research on those already, or you've been looking into that or...?

Marika:  Mm‑hmm.

Keith:  Oh, great.

Marika:  Well, I'm still doing research. I've done a lot of research. They're all countries I'll be able to travel around, which is good.

Keith:  The experiences of traveling caused a change in you over the years?

Marika:  I've learned that, as someone with a disability, I'm a lot more capable than I've always given myself credit for. I was told at a young age that I possibly wouldn't be independent, and I may have to live with my mom for the rest of my life, but it goes to show that I can be independent. I've traveled the world by myself.

Another thing I've learned is that people are a lot more understanding when you travel than they might be when you're home. I've found strangers and other countries have been super understanding and accommodating when it came to my disability, which is one of my favorite parts of traveling.

People are so kind and so sweet. They're always eager to help. [laughs]

Keith:  This is wonderful. I definitely encourage people to go visit clumsygirltravels.com. Thank you so much for being our guest today.

To learn more about ataxia, visit ataxia.org. Thanks again to Marika for sharing her story, and thank you for listening to the You First Podcast or reading the transcript online.

Please email any feedback, questions, or ideas about the show to podcast@disabilityrightsflorida.org.

[background music]

Announcer:  The You First Podcast is produced by Disability Rights Florida, a not‑for‑profit corporation, working to protect in advance the rights of Floridians with disabilities through advocacy and education. If you or a family member has a disability and feel that your rights have been violated in any way, please contact Disability Rights Florida.

You can learn more about the services we provide, explore a vast array of resources on a variety of disability‑related topics, and complete an online intake on our website at disabilityrightsflorida.org. You can also call us at 1800‑342‑0823. Thank you for listening to You First, the Disability Rights Florida podcast.