Until a year ago, Marleen van der Moere (17) from Sint-Annaland struggled daily with hellish headaches and coma attacks that lasted for hours. She was largely paralysed, could not stand in daylight and was barely able to eat or speak. In the restricted ward for young psychiatric patients, she thought she was going to die. Until her parents discovered that she had chronic Lyme disease. After nine weeks of treatment in Augsburg, Germany, she slowly but surely recovered. Now she is determined to fight for more recognition of the controversial Lyme treatment in the Dutch health world. No one should have to go through what I had to go through.
What was the worst thing about the time before you ended up at the clinic in Augsburg?
Giving up everything. Having to let go something every time and thinking that it was the last time you could do it. That started in the hospital in Bergen op Zoom, where I played the piano in the restaurant every day. Until the day came when I could no longer do it. Even going outside was no longer possible. I got used to it quite quickly and learned to enjoy the smallest things: sitting in a wheelchair for a while and trying to eat something. Visiting family or Facetiming with friends in the dark.
You thought you wouldn’t survive…
The weeks before I came to Germany for treatment were the most difficult. We all thought I wouldn’t stay there for long. In the psychiatric ward of the hospital in Rotterdam, but also at home. I was lying all day in the small office that my parents had darkened. Whenever I saw even a small ray of light, the headache attacks came back. It was as if someone had stuck a knife in my head. The people who came in during such an attack were horrified. I was still aware during the first attacks. Later, those hours went black in my eyes, I experienced the inhuman pain. It destroyed me completely. In Rotterdam I was not allowed to take painkillers. The only thing they did was throw a wet cloth to me.
Are you angry?
Yes. For six months I was told that I had to look in my head for the cause of my illness. I am still very angry about that. In the beginning I gave it a chance. If other girls at the clinic thought they saw aggressive men, why couldn’t I imagine that my legs no longer worked? But after a month I said to the psychiatrists: I’ve done my best, but I really can’t find anything, and I’m only getting sicker. So they said that my parents were making me sick. From that moment on we tried to leave. It was not easy. You can’t just get out of psychiatry, and we had to find a clinic that treats people with Lyme disease.”
You show a violent video of yourself in your fight for recognition of the disease.
In January 2018, my parents were asked by the neurologist to make a video of my headache attack. From then on, I asked them to film everything. Even when I was put in a wheelchair or given physio. From the moment I entered the clinic in Germany, I started making a video. You can see my course of illness from January last year until October. The best moment is when my father and little brother come to pick me up from the clinic. I hadn’t told them I could walk again, and the moment they saw me again was recorded!”
Isn’t it very confronting to see yourself again?
Well, I’ve seen it ten thousand times. Recently I was asked to play the piano and show the film at a Lyme conference. I wanted nothing more than that. In that room with the Lyme doctor from America in the audience, the film haunted me again on the big screen. Nevertheless, I thought it was a beautiful moment. I thought to myself, wow, I just saved up. I’m just standing here now. It was a scary step to put the film online. Today’s generation can classify you as an attention whore very quickly, to put it frankly. I was very terrified of that. Fortunately, the first reactions to posts from the clinic were only positive. Then I also dared to share the whole video. Like my other posts on Instagram and Facebook, I got many reactions from other Lyme patients from all over Europe.”
You can now look forward again. Did you ever have a normal childhood?
My stomach problems started from the fourth to about the eighth grade. During the first year, I was still attending secondary school. That was the best time. Even though I was often very tired, I could keep up at school and meet up with friends. I never really had a carefree childhood. Those days are slowly coming now. There are moments when I feel completely better, when I can do things that a normal 17-year-old can do. Then, I just forget that I have an IV and take ten thousand pills.
Do you think you will ever fully recover?
In January, the doctor said that I can be completely recovered within one to two years. That is of course our goal. After my treatment in Augsburg, the comas disappeared immediately and the headache attacks also stopped soon. Later, I had episodes of respiratory distress, for which I was even admitted to the intensive care unit. I also had to be given oxygen at home sometimes. That’s the scary thing about Lyme disease: the bacteria always look for another place to attack. So you never know what’s going to happen. The last time my fingers cramped up was just before the charity concert that was organised for me to play a piano piece. It still bothered me after that, but luckily it’s gotten a lot better lately.”
What are your dreams?
To get better and help others get better, like they did with me in Augsburg. Before I got sick, conservatory was my dream. Now I want to help people psychologically by doing sports with them. I was never a very sporty person. I used to run maybe once every three months. After I was paralysed, I made a list of how I wanted to get better. First it was my head; I wanted to be able to see light again, to speak, to concentrate. The second was to get my arms working again so I could play the piano again. My legs were third; I didn’t even need them back as long as the rest of my body was functioning again. The healing went in the opposite direction: my legs were the first to work again. Apart from meeting up with friends, I really enjoy running now, I really love it. I love running and I build it up a bit each time. This summer I’ll manage to run five kilometres, I’m sure of it.
Interview from 13.07.2019