Name: My name is Maria Sobotka. I don’t know why, but I’m called Mary.
Age: Older than 30, younger than 40.
Where do you call home? I live and work in my house, which is in Vienna, and I actually love it. But it’s too cold!
Education/Career: I have a master’s degree in Tourism Management. Somehow I came to work in the energy sector, and now I am the Accessibility – and Health Manager in the Corporate Social Responsibility Team. And I love my work.
Who do you live with? I live alone – Thank God, because my apartment is really small. I have seven siblings in total, so celebrating Christmas is similar to a circus.
What’s a typical day for you? Usually, I wake up because my assistant prepares coffee! Then I start to work with my notebook on the kitchen table. As time flies by, I keep working meanwhile I get dressed or I get a shower or I take a nap or I work on my balcony. Then my assistant comes to prepare dinner. And I finish my day on the couch turning off my brain with Netflix.
How long have you known you are living with FA? I was diagnosed when I was 16 because my mom noticed “something is not normal” and (of course) she was right, and I continued not to be normal.
Describe your transition from walking to walker/wheelchair. I was still able to walk alone to get my diploma. Then I used a walker basically during my 20s, and now I use a manual wheelchair 24/7.
What do you like to do to stay active and what type of exercises work for you to stay strong? As I said before, I love working. I have a 40 hour work-week and on the weekends I am attending a writing school. No worries, I am not planning on publishing my memoirs. Once a week I go to physical therapy.
Do you have any hobbies or special interests? I’m into reading and writing. And I like to dig deeper in a topic. Last year it was Christian faith, which resulted in me reading and studying the Old and the New Testament (I had 3 different versions of the New Testament). In 2018 it was Awareness Based stress reduction. I bought tons of books and even went on a retreat at Mallorca. 2016 it was healthy nutrition. I even did a degree in this, so now I have a diploma on “nutrition coaching.”
What is a good trick to make daily life easier? Finding a good reason why you get up in the morning.
When FA gets you down, what do you think/do to feel better? Nothing in particular. Everyone has ups and downs; also non FAers.
What is one way living with FA has POSITIVELY affected your life? Having a wheelchair changed a lot for me – in a positive way. People around me started to act more thoughtful and friendly once they saw the wheelchair. Before that I always explained myself and apologized for walking weird and being there – not anymore. I’m good at planning and organizing, which I never was. Without FA I’d be more chaotic. Due to FA I tend to find a solution for almost every problem and I usually don’t give up easily.
What is a favorite motivational quote of yours? It’s a german saying: “erstens, kommt alles anders, zweitens, als man denkt.” Meaning: Everything changes and nothing is predictable.
What is the best advice YOU could give a person who has been newly diagnosed with FA? Don’t forget to live your life!
What is the first thing you want to do when a cure/treatment to FA is found? Going out to dance! Then I’d move somewhere warm and become a surfer girl and shake some more.
“I have FA but FA doesn’t have me.” What does this statement mean to you? How do you live your life in the face of adversity? I have so many problems to solve and thoughts to keep in mind apart from having FA. In the inclusion frame I work in, people are clustered according to their differences to “normal” people. And people with FA are not. But, as a matter of fact, there are tons of other things that make me “not normal” – I have a different gender, (different religion – which is not a big topic for me in Austria), I use a wheelchair, I live alone whereas everyone in my age lives in a long-term relationship and most of them have kids, I work full-time as a woman in energy business and in a wheelchair and I like my work… Tons of reasons why I am different! And I also have FA. Other than that, I hardly ever spend time on having FA or curing FA or how to live with it. I have a good network of people informing me or telling me what to do (Jakob: “fill out this form”, me: “okay”)
Interview by
Jakob Mitterhauser