Hi and welcome to Clumsy Girl Travels! My name is Marika, a travel fanatic from Los Angeles. My obsession with travel started a few years ago when I decided to take my first solo trip. I ended up booking a tour through Ireland and that was that! I was hooked! Since then, I have been traveling non-stop and crossing some pretty amazing adventures off my bucket list!
Here is where you will be able to learn about my story. What my condition is and what hardships I have dealt with because of it. What traveling has been like with a hidden disability and what I do to make my life easier when on the go. Having these limitations don’t make traveling easy, but I manage and I have no plans on ever stopping!
The Diagnosis that changed everything
When I was 19, I was diagnosed with a condition called Ataxia, a Degenerative Neurological Disorder. It causes my muscles to move involuntarily making it difficult for me to do certain things like walking, picking up objects, and other voluntary movements. My balance isn’t that great as a result and at times it may look to some people like I am drunk. Due to it being a progressive disorder, no one knows if it will get worse or stay the same. That is why I am determined to live the life I want and enjoy every moment because having Ataxia means I may not be able to do a lot of the things I can do now, in who knows how many years.
My parents were aware that something was wrong early on. The doctors told them I had Epilepsy and Cerebral Palsy(which turned out to be a misdiagnosis). It was devastating because everyone knew that the quality of life for someone with those disabilities weren’t good and no one really knew how they would affect me.
As a kid, it’s easy to get distracted, so I never really paid much attention to the things that were hard for me. Like for instance, I couldn’t walk until the age of 4 because it took so much balance to do so, but I worked around that struggle by sporting a crab walk and I was pretty great at it if you ask me.
As I got older my disability got more noticeable to myself and my family. I had to start going to occupational therapy to help with the coordination of my hands and balance. I remember it being grueling having to go there every week, but without it, I don’t think I would be where I am today.
Unfortunately, I didn’t just have a hard time physically. I also had recurrent episodes where I would experience dizziness, Nausea, and migraines. They would last anywhere from 4- 12 hours and as soon as one would hit I would have to lay down and couldn’t be woken up until it passed. Many of the childhood experiences that should have been enjoyable like Christmas and birthdays couldn’t be because excitement would be a trigger as well as exertion and lack of sleep. Luckily, once I got diagnosed with Ataxia I got prescribed medication that has completely stopped my episodes and that is the reason I am able to travel and be independent today. The doctors think it may also stop the progression, so fingers crossed!
Anyway, I realized I haven’t talked about how I was diagnosed with Ataxia and to make a long story short, When I was 19, the neurologist I had seen all my life for epilepsy was convinced that something else was wrong with me. He was pretty sure I didn’t have epilepsy at all. This didn’t really shock me or my mom. I have tried every epilepsy medication in the book, but nothing worked! He sent us to the best migraine clinic in the country in Cleveland, Ohio. After spending 3 days taking tests for them to analyze, we were sent back home to play the waiting game. It only took 2 weeks, but the doctor finally had a diagnosis!
I was scared but so happy at the same time! I would finally get to know the mystery diagnosis that has played havoc on my body! When we discovered it was Ataxia, the first question we asked was: is it fatal? That seems like a logical worry when you just get a new diagnosis. At the time, we didn’t know this, but there are over 100 different types of Ataxias and Ataxia itself isn’t fatal, but when the condition worsens there is more of a risk of falling and getting hurt or choking when trying to swallow and a lot of times that does happen. It’s not uncommon for people to pass away due to the condition. I got diagnosed with Episodic Ataxia Type 2, which is one of the rarer forms and only 1 in 300,000 people have it. The progression isn’t as bad as many of the others.
Traveling isn’t always easy, but it’s manageable
Even though having Ataxia hasn’t been easy, I have been determined to not let it stop me from living the life I want to live. So after being diagnosed, I got prescribed the medication that completely stopped my migraines and I felt like a new person. I could stay up late, I could get excited about things, I could be independent and that is something no one, even myself thought I would ever be able to do. The medication gave me my life back.
I ended up moving away from home to get a degree in Travel & Tourism, moved to London to study Web Development and have continued traveling solo, without a migraine to dampen my day. It’s truly been incredible to experience life without the daily pain I used to feel.
Although traveling is doable now that I’m migraine free, there are still incidents that occur due to me having Ataxia. For instance, my balance is still horrible and trying to walk on cobblestones isn’t the easiest task. I also have realized pre-boarding is a must. I had an incident where I almost knocked a tray of drinks out of a flight attendants hand, so after being embarrassed and traumatized I decided I needed to start pre-boarding. I was also 12 when that happened so things tend to stick with you longer when you’re a kid.
My symptoms aren’t obvious most of the time, which can make it difficult to advocate for myself if I need help with something. I have learned while traveling the importance of accommodating my needs which includes making people listen to me if I do need help.
When I was on a flight once and had to use the restroom, I didn’t realize that I bumped into a lady who was sitting down and I spilled her coffee. She came up and yelled at me about it and I informed her, I have a balance disorder and she shouldn’t put her coffee somewhere where it can be spilled. There was another incident I had in Greece on a ferry where I was trying to grab a tray of food to sit at my table, but I lost my balance and the tray and food went flying everywhere and made a loud KAPLUNK!
Since then, if I am at a restaurant where I need to carry a tray I always ask for assistance. These are instances where I have had to learn that I can’t do everything on my own and that’s okay. It’s OKAY to ask for help and I shouldn’t be embarrassed about it. I have Ataxia. It’s a part of who I am and it will always be, so learning how to manage it while I travel and in general is the best thing I can do.
Now that we are better acquainted and you pretty much know my life story, I hope you will join me on my adventures as I trip and fall from one country to the next! That will probably literally happen. Enjoy!