After months of abnormal pain, 19-year-old Carmen Snijtsheuvel (now 57) received a diagnosis that changed her life forever: rheumatism. Carmen put everything on paper about her quest for recovery for her family. That became a book: ‘If I wake up dead again tomorrow’. “The story comes straight from my heart.”
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At secondary school, Carmen walked around with complaints and a strange premonition for more than six months. “I used to suffer from stiff fingers, especially in the morning.” It was not immediately clear what caused her complaints. And when that became clear, it was almost impossible to comprehend. “This only happens to old people, isn’t it?” says Carmen about her first reaction.
Wrong diagnosis
Carmen’s GP thought that a nerve in her neck was jammed and gave her vitamin B complex. After three months, he had photos taken and concluded that a cervical vertebra was too far back. “This turned out to be an error of judgment: my physiotherapist later said that everyone has that.” When her fingers swelled up while playing volleyball and Carmen felt a very bad, weird pain, she was examined again. “Not much later the phone rang: I had to go to the rheumatologist straight away.”
Rheumatoid arthritis
Carmen (then 19) was diagnosed with rheumatoid arthritis, an autoimmune disease in which joints become inflamed. At first she couldn’t imagine being seriously ill at such a young age. She was sporty, loved to dance and had the world at her feet, she thought. “I went into a free fall after being diagnosed,” she says. “Thirty-eight years ago there were no effective drugs, and the doctors were frustrated too. I turned out to be hypersensitive to the usual gold injections. The only treatment I received consisted of anti-inflammatories and cortisones in my joints. They have eaten away at my cartilage and destroyed my knees.”
Carmen decided to take control into her own hands and began a quest for recovery. She experimented with food, bee stings – the first one she was administered by a beekeeper in the Broekpolder – and other (alternative) medicine. The highlight was her stay in a Tao monastery in Colombia in 1997. Here she experimented with more bee stings, since you don’t have bees here in the winter. In the end this turned out to be too much of a good thing and after a period of recovery, things went just as bad there. “It was a tough, wonderful time. I would do it again, but not stop my meds and administer fewer bee stings.”
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Story from the heart
A friend of Carmen urged her to share her story with the world. In 2009 she started the long writing process. She called in a writer friend, who gave her reading material for a year about the writer’s craft. On his advice, she first wrote her story from the heart with pen and paper. “After that I started learning to write. How do you ensure that you continuously hold the reader’s attention? People have to turn the page.”
Carmen is happy with the book, but finds it strange that she can no longer adjust anything. “The writing was therapeutic. I like the details and only when it was finished did I see the whole. Then I could let it go.”
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Wide audience
Carmen hopes to reach other rheumatism patients and other chronically ill patients with her story. But the book, in which reflection is the central theme, is also inspiring for healthy people. “The quest to improve my health was an adventure in itself.” This adventure appeals to a wide audience. At the same time, every life has challenges. Carmen: “Eventually everyone has their own scenario.”
First and last
There will be no second Carmen book. She does want to continue writing, but in a different form. “There is so much involved. I’m not always clear in my head and I don’t have a strong concentration.” It took a long time for her book to be finished. “I have published articles before and I will continue to do so.”
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