Five years ago, Anne was diagnosed with a brain tumor. She was 36 at the time. Today, the 41-year-old encourages other sufferers through her social media channels.
FOCUS online: You were diagnosed with a brain tumor five years ago. For many people, this is probably the most blatant idea of an illness…
Anne: … because everything is controlled from the head, our sensory but also motor skills, yes. In fact, many people are shocked when they hear what I went through.
In your YouTube videos you seem very vital, very happy.
Anne: That’s not an act either, that’s me, I’m fine. But of course the illness gave me some impairments.
Which?
Anne: The tumor had grown on the cranial nerve, squeezing the cerebellum and brain stem. As a result, he damaged my hearing and balance nerves. I am completely deaf on my right side, but still have some residual hearing in my left ear. Due to the damage to the facial nerve, I also have facial paralysis on the right side.
What is that?
Anne: Facial paralysis with now nerve pain and also spasticity. You notice this when I laugh, eat, yawn or sneeze, for example. Then my face shifts slightly.
To be honest: If you don’t know you personally, but only the videos, it’s hardly noticeable.
Anne: I hear that often and also that it makes me “unique” in some way.
Because of the slightly crooked grin?
Anne: Let’s put it this way, I’m a particularly weird guy (laughs). Seriously, what people notice most is my optimism. Of course, the impairments took some getting used to. But I also see the possibilities that exist to deal with it better.
What exactly do you mean by “possibilities”?
Anne: For example, I am grateful for how hearing technology has developed. I wear a hearing aid in each ear, a so-called CROS device. There is a microphone built into the right hearing aid that picks up the sound waves and sends them to the hearing aid on the left ear. This means you can talk to me from the right or behind and I’ll notice. The hearing aids also suppress background noise. Unfortunately, they have been quite a problem for me since I became ill. When there is noise around me, I find it difficult to concentrate for long stretches.
Are these essentially the limitations? You just mentioned problems with the balance nerve.
Anne: The balance problems are still there, but they have gotten better. I sometimes feel a little unsteady when running because it still happens that I suddenly swerve and fall. In general, however, I prefer to focus on what is possible. I can move, run, through the forest for example. It is important that I focus my eyes on the route I want to cover in advance. I trained that in physiotherapy.
What about sports? Is this possible?
Anne: Yes, but I avoid some sports, like ice skating. Simply because of the risk of falling. Yoga is also difficult, like anything where you have to keep your balance. What I do is Pilates. I then simply leave out the exercises where you explicitly have to keep your balance. Hula hooping also works well, I have a firm footing there.
What else do you do in your free time?
Anne: I love being creative. For example, I have a pottery machine at home. It just feels good when I can turn off my head for a while and work with my hands. It’s like diving into another world.
Have you always been artistic or did you get it from rehab?
Anne: (laughs) I’ve never been to rehab, and it wasn’t even offered to me. I live in Switzerland and you have to pay for a stay in a rehabilitation clinic in whole or in part yourself. No, five days after the operation I went back home and into everyday life.
After five days? But that was probably a different everyday life than before. Are you unable to work?
Anne: I was still on sick leave for a while, but really not for long. I work in the legal field and am employed 50 percent of the time. A regular everyday life was important to me from the start. And: I like my job. That motivated me to keep going.
Was there ever a point where you thought: I can’t do it anymore?
Anne: If so, then most likely before the diagnosis. I had symptoms for a year, went from doctor to doctor and was not taken seriously. That was grueling.
What symptoms did you have?
Anne: It started with balance problems, nausea, fever and neck pain. A doctor told me, “as a mother you are sick more often”. My daughter was five years old at the time. And it’s true that as a working mother you are exposed to a certain amount of stress. But that wasn’t the reason for my problems, I felt that. At some point I could no longer hear anything in my right ear. My ENT doctor then booked me in for magnetic resonance imaging. I got the appointment in radiology pretty quickly. They said I was only in the tube for 15 minutes…
Sounds like a but.
Anne: Yes, an hour later I was still in there. Afterwards the assistant said: “The radiologist would like to speak to you.” And he said: “I’m sorry to have to tell you that you have a brain tumor.”
How did you react?
Anne: Surprisingly composed. Okay, when I left the consulting room I cried. How should I teach this to my family? But I caught myself relatively quickly and told myself that I have a small child and therefore have to function. I had an appointment with the neurosurgeon just two days later. The man was really great.
Because he gave you courage?
Anne: He’s already talked about what could happen during the operation. From cerebral hemorrhage to coma… But then, with a wink, a crucial sentence came from him: “I’ll manage it.” This doctor had a totally calm demeanor and seemed very experienced. This probably helped me not to go crazy during the remaining ten days before the operation. For example, I tried to think about opening my mind as little as possible. I just thought that everything would be better after the three centimeter tumor was removed.
Can you describe the ten days before the procedure in more detail? What have you done?
Anne: I did everything I wanted to do. If I wanted a piece of cake, I ate cake. And immediately. If I wanted to sing, I sang. But above all, I spent a lot of time with my daughter.
Out of a secret fear of wanting to take it with you again before it might no longer be possible?
Anne: During this time I actually made a living will and at times thought intensively about what it would be like if I didn’t come back from the hospital. These weren’t just thoughts, I also talked to my husband about them. I knew that our child would be in good hands, which was somewhat reassuring. On the other hand, it was absolutely clear to me that I would come back. The six-hour procedure felt like a beginning. As I said, after that things would finally start to look up again.
What is your first memory when the operation was over?
Anne: I was in the intensive care unit. Everything was dark, I was completely foggy and incredibly tired.
Did you have any pain?
Anne: Yes, I also struggled with severe nausea. The whole head felt… I don’t know how to describe it either. After all: the specialist staff were very caring. All I had to do was nod and I was given painkillers. Then I felt temporarily better and was able to inspect my condition a little more closely.
What do you mean?
Anne: I checked to see if I could move my head, see and then later see if I could walk. That all worked. On the third day I got up and walked a little. Still shaky, but I was making progress.
And otherwise?
Anne: The fact that I couldn’t hear anything on the right didn’t bother me, I already knew that. What was strange was that I couldn’t taste anything and couldn’t smell much. This has only slowly improved again. Specifically, when I ate a chocolate pudding towards the end of my hospital stay. Suddenly a hint of chocolate came through… Hurrah!
How did you leave the hospital after five days? On a walker? With a thick bandage around your head?
Anne: No, walking upright, with long hair. I had only had the right side of my head shaved, so I was able to cover that area with my top hair.
So you saw yourself in the mirror?
Anne: More or less. The facial palsy was much more severe back then than it is today. But the good news was that the tumor could be completely removed. This also meant that I didn’t have to undergo any chemotherapy or radiation therapy. So everyday life could start again straight away, with everything that goes with it: children, household, work…
That sounds incredible. Didn’t you have any help?
Anne: My husband pitched in, but otherwise, especially during the day, I was on my own. However, you shouldn’t get the impression that everything was easy. I was still unsteady on my feet and had some discomfort due to facial paralysis. In fact, there came a time when I was very sad. My eyelashes fell out. In addition, because of the paralysis, I often accidentally bit the inside of my cheek or my lip. It took strength to explore one’s own limits and to accept that some things were no longer the same as they used to be.
How did you get started making YouTube videos about your illness?
Anne: I’ve made videos before. I have been living in Switzerland as a German since 2005 and have repeatedly reported on my life here. A few months after the operation, I thought that some people might be wondering where I was. So I pulled myself together and told what happened in the next film. The reactions were overwhelming. Above all, the incredibly kind comments and messages from other affected people. This exchange and trust encouraged me to continue reporting.
Which is exactly what you did.
Anne: In the following videos I have focused on a specific topic. Sometimes I talked about facial palsy, sometimes about deafness. I was even allowed to film one of my MRI appointments at my hospital and show how such an examination works. Today I mainly report on my blog and on Instagram. There is always something I can write about and – hopefully – encourage other sufferers. In one way or another.
What are you referring to?
Anne: In my last Instagram post I compared myself to “Popeye” and gave tips on how to deal with it better. given with facial paralysis. I would have been happy if I had received such encouraging but also informative tips about brain tumors back then. Some of the information I found online was more…
… frightening, depressing?
Anne: That’s true, yes. Of course, it is clear that everyone has different experiences – even if these experiences are based on the same brain tumor. And yet I receive messages almost every day from those affected who seem to feel personally addressed and tell me how grateful they are. What makes the difference? I don’t know it. Maybe the view of life and that in my films you see Anne as a person – not just the illness and the impairments? By the way, I also gave my tumor a name…
I’m sorry, what?
Anne: I don’t want to deny the seriousness of the illness and certainly don’t want to ridicule anything. Again: everyone deals with such an illness differently. However, I wanted to make the whole thing a little more tangible for myself. So I named the tumor “August”. “August, you’re going to disappear!” I said. And that’s what he is.
Click here to go to their website: www.annesleben.ch
