Tineke (66) had a close relationship with her daughter Annemarie. In 2004, the lively, ambitious young woman made a trip to Florida. It was not until years later that she had contracted a fatal disease there: Lyme disease. Although she did everything she could to heal, Annemarie finally decided that living any longer was impossible. Much to Tineke’s intense sadness.
“Annemarie, my daughter, was a beautiful, smart, talented woman with a great sense of humour. Because I divorced her father and my next partner died, we were completely dependent on each other. And how we loved each other, how close we were…
We traveled a lot, for example we made beautiful cruises. When Annemarie reached the age when most people start living on their own, she bought a nice flat by the sea. But when she had to buy her furniture, she said, “Mom, I’m not going!”
The flat was sold again, because she stayed with me: we both thought that was much too cozy. That I had such a close relationship with her, I try to take comfort from that now that she is no longer here. There are days when I feel so amputated that all I can do is cry.
When Annemarie was 29, she went to Florida for three months. In 2004 that was. She put some plants in the garden of the house where she was staying. A few days later she emailed me saying she had a strange red spot on her leg. A mosquito bite or an allergy, she guessed. But going to an American doctor seemed like such a hassle to her, so she waited.
The stain disappeared after a while, nothing to worry about, it seemed. Until four years later she started having vague health problems. At that time she had a responsible job at a multinational, with a lot of stress. As a result, her resistance was reduced and the bacteria, which had been hiding in her body until that moment, could awaken. She suffered from muscle pain, fatigue, skin problems, hair loss, and so on…
When she once fainted in a shopping street and ended up in the ER, a burnout was thought. Annemarie came to sit at home, but she did not recover. Often she was so exhausted that she really couldn’t do anything anymore. Even then she said: ‘This is not a burnout. I have something, something else.’
But what? She scoured the internet and eventually recognized herself mainly in Lyme disease. That red spot in Florida at the time, it was probably from a tick bite, she now realized; he must have infected her with the Borrelia bacteria.
She underwent all kinds of tests, but without clear results. It was even suggested that it would probably be ‘between the ears’… A test in Germany finally showed that she had Lyme disease after all.
A horrible, insidious disease that affects all your tissues and organs. The course is unpredictable, but some patients can become completely disabled, especially if it is discovered late. As happened with my daughter.
She then tried every medication imaginable, including many courses of antibiotics. When the Lyme clinic in the Radboud hospital could no longer do anything for her, she put all her hopes in the alternative circuit. Bioresonance, diets, acupuncture… We had thousands of euros worth of herbs and supplements at home.
But she remained ill. Reintegrating into her work was absolutely no longer possible. Because of Lyme, she suffered from chronic fatigue and ME: inflammation in the brain and spinal cord. That caused terrible muscle and nerve pains. Sound, light, even a touch could be unbearable.
After a few years she was treated everywhere. My beautiful and sweet Annemarie had always been combative, full of hope, but slowly she became more and more gloomy. The nerve pains were so bad that she cried out regularly. Sleep was barely possible. This wasn’t living, just surviving.
Then we saw something on TV that gave us new hope. In Bali, a certain ozone therapy was offered, whereby the blood would be filtered clean, as with kidney dialysis. That seemed worth a try. We traveled to Bali where she was treated for several months.
But she only went backwards. She was able to see very little of beautiful Bali. Sometimes we took a trip in a van with a driver. Then she lay in the backseat. When we arrived somewhere, I supported her to look around, then she had to go back into the van. To the hotel, to bed.
It was also in Bali that she said it to me for the first time. She was in bed, I sat next to her. She said, “Mom, I can’t and don’t want to anymore, I’m going to end it myself.”
At first I thought I had misunderstood. But she really said it. Calm, determined. Annemarie was someone who wanted to live life to the fullest and that was no longer possible. It would only get worse. And she was already having such a hard time.
Her statement hurt me so terribly. At first I couldn’t understand it either. As a mother you walk to the end of the world for your child, if necessary. When she didn’t want to anymore, everything collapsed for me.
Back home, Annemarie kept talking about it. We fought a big battle over it. I didn’t want to miss her, but she kept repeating, “If you love me, you don’t want me to suffer like this.”
She longed for a humane, dignified death; that is why she submitted a euthanasia request to our GP. A modern, compassionate woman, who understood Annemarie’s wish and knew her long struggle.
When the request was rejected, Annemarie immediately knew that she would have to end her life in a different way. Every morning when I woke up, the world pressed on me. That horror movie again, where my sweet daughter was so sick and she discussed with me how to stop it.
I couldn’t get her to change her mind. Through the grapevine she ordered a lethal dose of medication on the internet; having it in the house gave her peace of mind. She arranged her cremation, ordered her own coffin. She canceled her subscriptions.
Annemarie looked forward to death, because she could no longer. She also trusted that there was more, that something new lay ahead for her.
She chose a date, March 19, 2014, and rented an apartment in Scheveningen, overlooking the harbor. We were there for a few more days, she, me, my friend.
On the morning of her death, the most terrible day of my life for me, Annemarie was beaming. She was more beautiful than she had ever been. She was very happy that she could step out of her sick body.
The weather was nice and we took a ride on the boulevard. Seeing the sea one more time, she still enjoyed it so much. In the afternoon we drank champagne; a good friend, her psychologist and my boyfriend were also there.
We held each other and cried. Then we left. She would take the medication at four o’clock. It remained silent for hours afterward. At eleven o’clock in the evening, my friend and I went to the apartment. It was dark. We found her on the sofa, facing the window, the harbour, turned. She had her earphones in, playing her favorite music.
I miss Annemarie terribly. She impressed me so much: ‘Mom, you mustn’t linger in the sadness. Promise me that, be happy for me.’ But that is still very difficult. I keep thinking, Is there anything else I could have done?
Her room is still intact. I can’t bring myself to change anything about it. I scattered part of her ashes in a beautiful bay near Nice, as she wished. The other half is at home, close to me. But she is always close to me anyway, deep in my heart. I am so grateful to have had her with me for 39 years. That happiness still outweighs the overwhelming sadness.”
The names in this article have been changed for privacy reasons and the woman in the photo is a model.
Good to know
- Not every tick is infected with the Borrelia bacteria, but it is crucial to always err on the side of caution and see a doctor immediately. The sooner you are treated, the better.
- Op the site of the RIVM read what to do if you have been bitten by a tick.
- Of Lyme Association fights for proper diagnosis and treatment for Lyme disease.
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