The virus raged in her brain: In 2017, Susanne Schlößer fell ill with a particularly severe form of TBE, a disease that is transmitted by ticks. She still suffers from the consequences today, seven years later. A conversation about the worst time in her life.
Susanne lies motionless on her back, she is motionless. She gets food through the tube in her nose. She has a catheter. Her eyeballs are excessively swollen and her eyelids do not close.
Susanne Schlößer’s mother wrote this in her diary after a visit to the hospital. Her daughter is in a comatose state in a clinic in Nuremberg. She has TBE, probably caused by a tick bite. The diary entry is from 2017.
Today Susanne Schlößer is 63 years old. Apart from the thick lenses of her glasses, nothing visually indicates the illness. But the tick virus raged heavily in her brain – with consequences that Schlößer still feels today. In a conversation with FOCUS online, she looks back and reveals how she fought her way out of the deep hole – both physically and mentally.
FOCUS online: It all started for them in 2017, possibly with a tick bite, which they never noticed. What was that time in your life?
Susanne Schlößer: I was on the rise professionally. I was employed at the university on a fee-based contract and was very proud. I earned more this year than in previous years. In the middle of a high, I got so sick. I suddenly had flu-like symptoms: headache, nausea, weakness. I stopped eating and drinking. This went on for a few days. As a self-employed person, there was no sick note for me, I just thought it would be okay. However, those around me were alarmed. My family called my ex-husband who is a doctor. He sent me straight to the clinic. I no longer consciously realized that I was taken to the hospital.
Do you only know that from stories?
Schlößer: Yes, I was no longer responsive, I didn’t notice anything, I was just lying around. The viruses had already blocked my brain. I wouldn’t have been able to make any more decisions either. My son carried me to the car.
That was at the end of July 2017. What were you later told about your first time in the hospital?
Schlösser: I wasn’t in a coma, but my brain was like it was switched off. At first we didn’t know what the cause was. Finally, a lumbar puncture was performed in neurology and the tick virus was discovered. You can’t actually do anything against a virus like this, you can only limit the consequences. I then went to the next clinic. It was clear that my condition was not life-threatening, but that it would take forever until I was halfway better.
What is your first conscious memory from the hospital?
Schlößer: I have no memory at all of the first month. My first conscious memory: I thought the wallpaper was colorful, I saw color everywhere. I thought the nurses were Russian soldiers. There was a nurse who seemed to have a Russian accent. I processed that in dreams. What’s more, my eyelids didn’t open, I didn’t see anything. During that time I concentrated completely on listening and dreaming and developed incredible fears. My family had to keep reassuring me that everything was okay.
How long were you in the clinic overall?
Schlösser: Three months. I guess I always had visitors, there was always someone there. My sister came from Munich to Nuremberg twice a week. She initially told my mother not to come because she didn’t want her to see me like that. She later cried bitterly after her first visit. I looked terrible. When friends came and saw me like that, they all got vaccinated afterwards.
Have you ever thought about a vaccination against TBE?
Schloesser: No. I thought, I live in the city, I can recognize a tick and remove it. But in my case I didn’t see any ticks at all. What’s more, my virus doesn’t actually occur in this region. My severe form is extremely rare. A vaccination would definitely have made my recovery easier.
How did you deal emotionally with the fact that you were affected by such a rare, extremely severe form of TBE?
Schlößer: At first, in the clinic, I was so preoccupied with survival that I didn’t bother with other thoughts. First of all, I did everything I could to get back on my feet; I used all the occupational therapy, speech therapy and physiotherapy. The attacks of desperation came later. I cried a lot after the clinic. I was in a wheelchair, still half blind. At some point a doctor once said: ‘If you could convert tears into energy, then a lot would be achieved.’
Back to your time in the clinic: What did the first steps look like?
Schlößer: I received all the therapies you can imagine. I had to learn everything all over again. My brain had shut down all bodily functions. I couldn’t open my lips, couldn’t swallow, couldn’t eat. My entire jaw joint was locked and you couldn’t even put a straw in it. I was fed through a nasal tube and peed through a cannula. So I got eating therapy. Then my eyelids were glued up so they wouldn’t get used to drooping. This was also a form of therapy. It took a lot of dripping and anointing as soon as my eyes were open for me to be able to endure it at all.
How did you manage to stay motivated even though progress was only taking small steps?
Schlößer: You have to recognize that small steps are successes. And a very important psychological measure when you feel bad is attachment. I connected with everyone, knew all the therapists by name, joked with all the nurses. This bond made me feel alive.
In what condition were you discharged after three months?
Schlösser: I was sitting in a wheelchair. We have rebuilt our house – a mid-terrace house with three floors – a little with railings and ramps. I then slowly made it from the bed to the bathroom with the walker. But I couldn’t stand for long. There always had to be someone with me. My two sons and my husband were there, my mother came every week and also my brother from Hamburg and an uncle to look after me and cook for me.
How did it feel at that point to still be dependent on others?
Schlößer: Of course I struggled a lot with it and still struggle today when I can’t do things. Because I’ve always been such a nimble and active person. But basically I was incredibly grateful for my big family. And there was always small progress, it was always moving forward. A year after the illness, I went to rehab again. With the walker, a lot of physiotherapy every now and then without the walker. I thought, I’ll work hard on myself now and then I’ll have my old life again. But then I had to realize that although things got better, they would never be completely good again. If I pushed myself too hard, my body would put me in a state of neutrality so that all I could do was sleep or lie down. I have to manage my strength even though I want to do so much more.
What was the last feeling of success that you remember?
Schlösser: Last year I was on vacation with friends on Lake Garda. We went on a hike above Lake Garda, over hill and dale for an hour, then we took a break in a café and then I had to go back for another hour. A friend said: ‘Susanne, this is the first time you’ve been able to do this again. That’s really wonderful.’ That was six years after the illness. It was a long way to get there.
Do you sometimes miss the old version of yourself or have you found peace?
Schlößer: In psychology it is said: Comparison is fatal. As long as I compare myself to how I used to be, I can always list a list of things I can no longer do. This is frustrating. In psychosomatic rehab I learned to work on other things and to be grateful. The part of my brain that is responsible for balance was massively affected by the virus. I also suffer from neurological strabismus and my eyes tire quickly. So I can’t drive a car or bike. I can no longer play the piano or tap dance, which I used to enjoy doing. But that’s why I sing and paint. I can’t read long books, but I just listen to audio books and German radio and am therefore very well informed politically.
You try to focus on the positive aspects. Is this advice you would give to others affected?
Schlösser: Yes, definitely. And I learned that connection is the most important thing in my life: enjoying being with people. I go out to the market, talk to everyone, joke everywhere. Attachment is the single most important survival tool. I can only recommend this to everyone. The worst thing is to sit at home and be grumpy. Go out, be as alive as possible, that helps!