Name: Eva Eisenköck
Age: 35
Where do you call home? Grieskirchen, Austria
Education/Career: I graduated from the Federal Institute for Kindergarten Education. I have worked as a kindergarten teacher for 13 years. In 2018 I had to give up work due to the advance of FA. I was able to complete a retraining course as an administrative assistant. Since 2020 I have been working in the citizen service office, where I have various tasks such as organizing the holiday pass for children, holding elections, and public relations work. It was very difficult for me to give up my job as a kindergarten teacher. Now FA took that away from me, the work I do with children is something that I loved more than anything. I am a very consistent and ambitious person and that helped me to see the new job as a challenge. After a while I was able to see the advantages of the new job and was positively surprised at the varied range of tasks.
Who do you live with? I live alone in a flat on the ground floor with a terrace and a little garden.
What is a typical day for you? During the week, I get up early and make my way to work. I work 4 days a week. After work, I like to move: cycling or to the gym. I like to spend time with friends and family: meet up at a café after work, go out to eat or go to the movies. I also like to relax with a book and music in the sun on my terrace.
How long have you known you are living with FA? I was diagnosed in January 2012. I used to feel that something was wrong. But it took me some time to get to the right doctors who recognized it.
Are there any others with FA in your family? No, none of my family is affected by FA
Describe an adaptation and/or transition you have had to take due to living with FA. Right now I need a walker. Until 2018, I was mostly still on the road without help (very spectacular as my physiotherapist says). It started with the fact that I noticed during sports activities that it cost me more energy. I noticed increasingly that it was harder for me to control my body. I had to concentrate on keeping my balance, especially on uneven ground. I felt that something was wrong, I was very worried and tried to hide it. As it became more obvious, I withdrew more and more because I became insecure through the looks of other people and wanted to avoid questions. In January 2018 I fell and hurt myself and was in a wheelchair for about half a year. I tried to fight against my fears that the fall had left behind. With a lot of sweat, I took the first steps towards rehabilitation and fought my way back to my feet with great support from my physiotherapist. I was always afraid of the wheelchair, especially because I always had in mind what the doctor prophesied to me at the time of the diagnosis that I would be in a wheelchair at the latest at the age of 40. The time in a wheelchair was not so bad – it took me less energy to move, I could perceive the environment more consciously again, look people in the face and smile at them relaxed, as I did not have to concentrate on my legs. But I was very limited in my independence. The desire was even stronger to get back on my feet. With the walker I got the freedom back and am largely independently again. The time in a wheelchair has changed me and my point of view: life goes on even when you sit in a wheelchair – it is different but possible. I have learned to deal with the looks and reactions of others and feel my way of walking as normal. I am happy and grateful to be back on my feet and keep fighting.
What do you like to do to stay active and what type of exercises work for you to stay strong? I regularly have physiotherapy, go to the gym and ride with my recumbent tricycle. In case of bad weather I have to use the ergometer. I also have physical rehabilitation every two years. I try to master my everyday life as independently as possible, go shopping, do the household (cleaning, doing laundry, cooking…)
Do you have any hobbies or special interests? I like to be outdoors in nature (preferably with the recumbent tricycle) and spend time with my family and friends. I volunteer at the Red Cross as a reading mentor and in a library. I like to read and listen to music.
What is a good trick to make daily life easier? Laughing, spending time with people, having conversations, and listening to music.
When FA gets you down, what do you think/do to feel better? When I’m not feeling well, I like to be alone, drive to a favorite place, listen to music and let my feelings run free. After that, I feel better and have strength again.
What is one way living with FA has POSITIVELY affected your life? The disease has made me stronger. I have become more self-confident, have more confidence in myself and have learned (and am still learning) to stand up for things. I had to learn to listen more to my body, to give it breaks and to use them sensibly. I appreciate things more and am satisfied with small things. People who could not cope with the disease have said goodbye to my life and the people who stayed have become all the more important. I was able to get to know many people on my new path and some have taken an important place in my life.
What is a favorite motivational quote of yours? “Aufgegeben wird nur ein Brief” (The only thing you give up is a letter)
What piece of advice that someone with FA has given you that encourages and inspires you? Giving up: What is That… (Book by Esteban Griebm who also has FA). At his book presentation, he told me to keep going, no matter how strange people look at me.
What is the best advice YOU could give a person who has been newly diagnosed with FA? Life will definitely change but it’s not over. Accept the disease, learn to live with it and grow on it. Stop informing yourself about the disease – feel what your body needs and do what is good for you, what is important to you.
What is the first thing you want to do when a cure/treatment to FA is found? Throw a big party with all the people who supported me and were there for me. And I would go up a mountain, lie down in the meadow, enjoy the scenery and cry of happiness.
“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? FA is a disease that, according to the textbook, and has certain symptoms. But it doesn’t mean that they all apply to me. Every person is different and everybody deals with it differently. I stopped planning – as it comes, so it comes. And then you have to make the best of it.
Interview by
Jakob MItterhauser