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Kai Eickler

Sandra Johnson Name: Kai Eickler

Age: 33

Where do you call home? Waltrop, Nordrhein-Westfalen, Germany

Education/Career: I don’t have any education due to my disease, but I am artistically very gifted which is also my job.



Who do you live with? I lived with my girlfriend from 2013 to 2019. After the separation, I now live in assisted living.

What is a typical day for you? I get up at 6 am and slowly get ready for work. Work is until 3:30 p.m. Going to work is very important to me because of the regular daily routine. I feel useful, am free from thoughts, get to know people, and I am not always at home.

 

 

How long have you known you are living with FA? I was diagnosed when I was nine. We looked into it because my brother is only a year older than me and moved completely differently than me. When playing soccer, for example, I was uncoordinated and fell too much, everyone else was wondering why. At school, I often just fall off my chair and I wasn't as focused in the afternoons as my brother.

Are there any others in your family with FA? No, I am the only one. I have three siblings and they're not affected.

Sandra Johnson Describe your transition from walking to walker/wheelchair. I got my first wheelchair in 2005. It disappeared completely in the trunk and I didn't need it at first. Because of scoliosis I had to have an operation. A year later the spine began to bend down, which was operated on two years later. My entire spine was stiffened and that was the beginning of the wheelchair. At first I used it for short distances. But because I'm so athletic I did everything completely without help: for example driving the wheelchair for kilometers. I also had fun with the wheelchair and drove it like a kamikaze. I did a lot of sports, which broke the bars in my back after about six months. And then of course I had to have another spine operation, and that was the reason why I was slowly being confined to a wheelchair.

What do you like to do to stay active and what type of exercises work for you to stay strong? To put it briefly: I know what you shouldn't have in our situation: boredom! That's why I will definitely go to work while I still can! I do what I do best. I paint my pictures all day long at work. It is a very nice feeling when your current picture is even better than the last one. That's a great feeling that you can still do something... and after work I take care of my body. For example, I ride my handbike a lot and for a long time, in order to keep my strength and endurance as best as possible. I focus on what I still can do: we have to move and keep alive. No movement is bad for mental health and makes you depressed. So for me the most important thing is: you always have to look for something with what you can move best.

Do you have any hobbies or special interests? My hobbies changed now to what I still can do. Like Picasso, my biggest hobby is painting. I'm at least as good at it as a completely healthy person. Riding is also very important: because you can largely maintain your strength and possibly also build it up a bit. I always ride as fast and for as long as possible. There are more hobbies, for example I'm a very big USA fan, it just distracts me from my physical problems and I do a lot of the US stuff because it just makes me happy.

What is a good trick to make daily life easier? I just try not to think about what I could do if I was healthy because I am sick and that will not change. Stop thinking and find hobbies that you can use to distract yourself. However, you have to think about what you can do best in order to keep yourself as fit as possible.

When FA gets you down, what do you think/do to feel better? When I feel down riding helps me best. It is not enough to ride for a short time, only after a while you start feeling better. I simply feel more balanced and have the feeling that I have accomplished something.

What is one way living with FA has POSITIVELY affected your life? Positively affected is exaggerated. I would love to be a completely physically unrestricted person, without any discomfort. But it's not like that, it's a part of me and I learned to deal with it. Without this disease I would never have found out what a strong person I am, I usually find an answer to all questions. And without this disease I would never have found out what an outstanding artist I am!

What is a favorite motivational quote of yours My motivational quotes change very often. You definitely have to keep one thing in mind: Try it, because if you don't do anything, you've already lost...

Sandra Johnson What piece of advice that someone with FA has given you that encourages and inspires you? I don't get advice from other people! Because I know my body best and know what it needs and what it doesn't. Everything else just confuses me...

What is the best advice YOU could give a person who has been newly diagnosed with FA? At first keep calm and get rid of all bad thoughts. Most important of all, it is only limiting to talk to doctors. Put together your own sports program. You have to maintain what you still can do at all costs. Sport is the most important thing for us.

What is the first thing you want to do when a cure/treatment to FA is found? I definitely want to move as much as possible. I know that I can no longer do that, I will teach myself again and will definitely keep it.

"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 never lose sight of my luck - my family, my upbringing, my genes (FA notwithstanding; though even there, I’m spared several symptoms.) I define it as if you let yourself suffer from your disease: not going to work, no hobbies and no friends. But it's the other way around: you have a strong will, friends or hobbies and a purpose in life.

Tell us a little more about you... So I've always been close to my brother. Instead of sitting in front of the computer or television, we went out together and did all kinds of sports. Basically like friends who sit on top of each other for 24 hours, only that I wasn't as agile as my brother, but I really wanted to be better. I practiced sports until the doctor came. Everyone saw how willing I was, but because of my movement they saw that something was wrong with me. When I was nine I got my diagnosis. It wasn't that bad for me because I didn't listen back then and didn't know what was coming up. Everyone looked at me so strangely, but I was quick to say that I don't need pity and that I can get along well with it. I could ride my bike, and soccer was pretty good until my spine operation. First I was a striker, and since running wasn't going so well I was a goalkeeper. I never got a goal conceded for 500 minutes and just got every ball. After the operation the wheelchair became more important. It was an absolute sports wheelchair that I somehow found fun with and was able to rush downstairs or handle it a bit like a skater. Then I sat in a wheelchair a lot and saw it as a piece of sports equipment. After the third operation I was no longer allowed to do extreme sports in a wheelchair. Then everything went very quickly because I wanted to move but I wasn't allowed to. After a while the legs have deformed so that I have been using orthoses ever since. Then I bought a handbike on the internet. It was the best decision of my life. I finally had fun again, and I did something for my body and asked for worry-free time and I just felt good. I am doing it till today, although it doesn't look so great anymore, but I don't want to know how I would look now if I wouldn’t do anything. Then there is painting and going to work. I didn't do any education because of my disease and all the operations. I started right at Caritas because I really wanted to see and hear something different. And I happened to see at work what an incredibly talented hand I have. That's how I started painting, and the pictures are definitely worth seeing and are getting better and better. That gives me a big motivation boost every time to continue doing the same. And I plan to carry on until the end of my days ..



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