Met delusion created Caroline Ligthart a sick children’s book heroine who comforts young cancer patients. She drew from her own experience. “You have to be constantly careful not to get into your head assholes.”
How do you write a funny and comforting book for children with cancer? She faces this task during the ‘Camino’, her walk to the Spanish Santiago de Compostela. With a 12-kilogram backpack, she covers 800 kilometers in early 2014, which gives her ‘immense satisfaction and an enormous sense of freedom’, after ‘all the misery that preceded it’. Four months earlier, she put an end to a completely different process: an operation, six chemotherapy and radiation for breast cancer.
On her return from Spain, she writes at a rapid pace Waantje gets the cracker, in which ‘crunch’ stands for cancer, ‘red mikmak’ for blood and ‘kladradatch’ for chemotherapy. She gives her young, sick readers tips that have benefited her herself. Nurturing positive thoughts is the key: don’t see ‘Kladderatdach’ as poison, but as brightly colored lemonade and the radiation is on behalf of a machine that radiates courage into your body. “I hope that while reading this book, children forget their misery for a while,” she says.
The 57-year-old Caroline Ligthart herself was served a large portion of it. Already at the age of 15 she is confronted with her mortality. With her parents, sisters and brother, the family from Naarden is on a joint skiing holiday for the first time, when an avalanche comes towards them: ‘A huge layer of snow, with a thunderous roar. ‘Thanks, Mom and Dad, had a good childhood,’ I thought. I was sure to die, but I experienced it neutrally, almost laconic, perhaps because I was a brooding teenager. Luckily I survived.’
In her early 30s, while working as a television production manager, she was hit in her car, resulting in whiplash. The good thing about that accident is that sitting at home puts her on the trail of writing books: ‘That was really a discovery. Writing gives me the right to exist, that’s how it felt.’ two novels, Russian water in Second hand flowers, are the result.
In 2012, it was accidentally discovered that her aorta was about to burst, necessitating acute open-heart surgery. Again she responds laconically: ‘I saw dying on the operating table as a luxurious way of dying. ‘Cancer is worse’, I said to those around me.’
A year later, the breast cancer presented itself, which she hoped to end with the Camino. But from 2016 she has been getting complaints as a result of metastases. As of 2021 she is incurable and in the ‘palliative phase’ – her doctors now give her another four years. For now, she feels good and works as a teacher of creative writing in primary schools. But she also realizes that her time horizon is probably shorter than that of the average mortal.
From the age of 47 you have had to deal with open heart surgery, breast cancer, its return and being declared incurable. Have you ever wondered: why me?
‘No never. I didn’t wonder that when I was healthy, did I? While you have just as much reason to ask that question. I would like to see the question why I experience what I experience answered, but I don’t think there will ever be an answer to that. In my opinion it is purely coincidental. After my heart surgery and my breast cancer, some people said to me, “Well, don’t worry, you’ve had enough.” Nonsense, as it turned out. Why would life be fair? You have people who get cancer four times or lose two children, the worst things happen. That it wouldn’t happen to you is wishful thinking. My partner, Paul, does the same when he says: we will be 80 together. But I don’t believe in that at all.’
What lessons have you learned from your case histories?
‘One lesson I think is important: don’t anticipate misery. That sounds nice and good, but in practice it turns out to be very difficult not to get ahead of things. You have to be constantly careful not to get into your head assholes.
“It’s a lesson I first learned when I was diagnosed with breast cancer. People came up with the most horrible stories, for example how someone had barely survived chemo. I didn’t want to hear that at all. As soon as someone started like that, I interrupted them with the words, ‘I assume you’re fine. If not, I’ll see how I react.’
‘I received another important lesson from a nurse. He told me: ‘Don’t start behaving like a patient.’ That was a wake-up call. I didn’t feel sick, wasn’t hanging on by wires yet, but still I went to the hospital every day by taxi. Then I canceled that patient transport and started cycling, eighty minutes a day. Turned out I could still do it easily!
‘Of course I felt really patient at times, for example when my hair fell out. That was part of my identity. I stood cramped with misery washing away my last hair. Then I am Bye Bye Love go sing. I had to chuckle. If only I had managed to turn the misery around. I was lucky with the chemo, because I was able to continue working in my allotment garden the entire period. That is not for everyone. It took me more and more effort, because those cures build up, so I got sicker and sicker. But then I arrived broken, I started to pull weeds and after fifteen minutes I thought: I feel better. Nature turned out to be healing.’
Three months after your last chemotherapy you walked through Spain with a heavy backpack.
‘The most beautiful period of my life. No more hospital, no more exams, no fear, no blisters; twenty kilometers a day just walking, nothing but freedom and the here and now. That was really fantastic. My most special experience was meeting an American. I told him about my illness and writing. Then he said, “You have to write for children.” That was a lightning strike, I got the feeling: yes this is it, this is my life mission. I got all emotional. That’s when I first got a fear of premature death.’
Why at that time?
‘In my life I have always been looking for the answer to the question: what should I do? At that moment I found my life mission. Suddenly I saw how I could be meaningful to others, to children suffering from the disease I thought I had gotten rid of. This also allowed me to put a positive spin on my unpleasant hospital experiences. If that helped just one child, it would make sense. That thought deeply motivated me. As a result, I felt an enormous rush, I had to accomplish this.’
Did that work?
‘Yes, also because delusion not only touched children with cancer, but also children with a cancer patient in their environment and adults. A woman with breast cancer wrote to me: ‘Waantje is my hero, because through her I can accept my illness.’ That touches me. Or a mother who told about her 12-year-old son who had lost his sister to cancer. The book gave him the courage to talk about his feelings for the first time. What I succeeded in conveying is that you can’t influence what you experience, but you can influence how you approach that fate. I tried to indicate a lighter way by pointing out what can bring you comfort. In doing so, I mainly came to the power of thoughts.’
When did you experience that?
‘At the moment I experience this by keeping my mind away from what lies ahead. Instead, I focus on what makes me happy, like writing, my garden, being around people. But I don’t suppress my illness: talking about it with Paul, friends and family is most important to me. Sharing your life makes everything softer. When I go into depth during those kinds of conversations, I get the feeling that it all makes sense. The misery doesn’t get easier, but it does get lighter.
‘But I don’t always manage to muster up the power of thought. In the first two months after I was told I was incurable, I was completely devastated: crying, fears, bad sleep. Then I was not that strong woman, but scared, scared, scared. Not for death, but for the way there: what awaits me?’
How did you get out of that?
“If you’re sad, you have to be completely, it will pass faster,” I wrote delusion. I applied that. You must be like a child, without restraint. That’s how it went, after two months. Last summer I was still hit, when it turned out that the first round of pills had already worn off after eight months. They had said one or two years. Now there is still hormone therapy, then comes chemo, I don’t know if I still want that. But right now I feel super happy. The sadness can’t just strike again.’
Is that high feeling of happiness also due to your shortened time horizon?
‘Yes, because it leads to intense living. For me, that means above all: creating instead of consuming. There’s nothing like the fun of making something out of nothing. These don’t have to be big things, keeping a garden in order is already great. That is not small, by the way, but big: you ensure that life gets a chance. It doesn’t have to be good either, I tell myself. I only find that difficult when writing, I am strict with myself. It’s so essential to me. It gives me the sense of existence: this is what I must and want to do.
‘My feeling of happiness also has everything to do with Paul. Whether or not a relationship has more impact on me than whether or not a palliative phase. That’s a strong word indeed, but life is so much easier and more fun with a partner. You can share so much with each other: happy moments, small setbacks. He came into my life when I was not yet incurable. We celebrated one year together, the next day we heard. Luckily we had that year. He’s such a sweetheart who would think: I can’t leave now. But fortunately that’s not the reason he’s staying.’
How do you feel about death right now?
“Death makes me wonder, Did I do what I wanted to do? I don’t feel any urge to change my life. I especially want to finish another children’s book. My urge to live is strong, letting go of it, saying goodbye, seems very heavy to me. Just as I can look up to what awaits me, the way there. But otherwise: dead is dead. I am especially grateful for my life and dare to say: I did well.’
