It was 1975. The working day felt more restless than usual at the insurance office in Amsterdam. Bart, then 30 years old, was worried about his 2-year-old son. He had been ill for several days, but the doctor could not say what was wrong.
His wife Ria took the boy to the pediatrician just to be safe.
anxiety attack
Bart was just doing some administrative work when she called: “It’s not okay, he needs to be hospitalized.” Within half an hour he was standing next to his son’s bed. He almost had meningitis. “It was close,” the doctor said.
Bart listened, but he was suddenly overcome by an enormous fear. “You’re starting to sweat all over,” Ria said then. ‘And you pull white. Are you okay?’
You’d think the feeling came from what Bart had just heard, but strangely enough, another thought ran through his head. “Did I turn off the lights in the office or not?” he wondered. That thought ‘screamed’ at him, and Bart was overcome by compulsion: ‘I have to go see if the light is still on, I have to go back. I have to go back,” said a voice in his head.
Bart sees that moment as the starting point of his compulsive and anxiety disorder. Or as various therapists later diagnosed: his obsessive compulsive disorder (OCD disorder).
Social and loved
Bart looks cheerful as he tells his story about the disorder that would dominate his life for decades. Life has been smiling at him for a number of years now, but it didn’t matter much if he hadn’t been there anymore.
He grew up in Amsterdam, in a family of eleven children. His father was a high school principal, his mother a housewife. “I didn’t like such a large family at all,” he says. Bart lacked a little attention. For example, when he got low grades for German, English and French and his father sent him to the LTS (Lower Technical School) without consultation. “I would have liked it better if he had asked me what I wanted. But that man also had a busy job and eleven children, so I understood that it went like this.”
He describes the LTS period as ‘an unhappy period in his life’, but that changed when he started working: “From then on I was a happy boy. I had many friends with whom I did nice things, such as clover jackets.”
Bart was known to friends as sociable, loved and easy. His wife Ria also got to know him in this way. They met on a cruise boat. “I’ll never forget the moment I first saw her,” he says. “That was during breakfast. We had a nice conversation, but I saw that she had a ring on her finger. God, she’s married, I thought. But I didn’t see her husband anywhere. Not much later she told me that she was a widow. That night we weren’t kicked out of the bar until 3:00 am It was a wonderful week.”
A few months later they married.
Laundry list of thoughts
The anxiety attack in the hospital came several years later. According to Ria, this was a reaction to the busy period they had had together. The solution: take a vacation. They went to Mallorca for ten days.
They hoped it would be just one anxiety attack, but it wasn’t. The thoughts kept getting worse. What exactly was Bart having trouble with? “Oh, a whole laundry list,” he says. “I was sure I didn’t lock the door. And I was sure the gas was still on. I had to call someone who would check right away. I forgot to make sure. My youngest brother had a brain tumor and I was sure he wasn’t able to arrange things himself. I had to go back to Amsterdam to help him. The neighbor had completely destroyed his garden while I was gone. And so on…”
“I had unlimited fears about anything and everything.”
Little improvement
It was no longer like this. And so Bart contacted a psychiatrist upon his return. He was prescribed a list of drugs: diazepam, lithium, quetiapine, clomipramine, oxazepam, mirtazapine and haldol drops. After that, the conversations mainly focused on the impact of the death of Ria’s first husband on Bart and the role of Bart’s father in his life. “But we didn’t have to go that way at all,” he says. “That has never been the problem, I knew that right away.”
Countless therapies and countless drugs gave little improvement. His employer’s offer to continue his work in Curaçao gave Bart hope that the complaints would diminish. But that didn’t help either, on the contrary: the fears got worse. “I had a home office there. So if I felt the compulsion to check something, I had to do it immediately. In the Netherlands I was braked because I still had to drive two hours from work to home.”
From his 30th to his 70th Bart hid his compulsive and anxiety symptoms from the outside world. Yes, Ria knew about it and his children and secretary. But his siblings or colleagues had no idea. Bart was ashamed of it and thought that few people would understand him. Plus: a conversation about it was a trigger for his OCD. “Afterwards, I had the feeling that I had to call them back to give them more explanation. I had to justify myself.”
Completely paralyzed
Work was a safe place for Bart. It kept him from projecting his fears onto his family. He was dead for that. When that happened, when he retired, it was a complete disaster. “Every visit to my kids has been horrible,” he says. “Have you insured your car? Where? And are you not paying too much?” These questions kept coming back. And each time his children replied, ‘Yes, Dad, I’ve told you that six times already. I don’t want to talk about it anymore.’
Bart didn’t know what to do with himself anymore. He felt completely paralyzed. “When I was at home, my whole body was shaking and my vision was blurry,” he says. Ria sometimes asked if I wanted to walk a bit, but I couldn’t. “I felt so bad and just wanted to lie in bed and sleep, sleep, sleep. The thoughts in my head were driving me crazy. I felt constantly anxious about the things I should have done or should have understood.”
His wife was desperate. “It was terrible for her, really terrible,” Bart says. “I remember when we went out to dinner and she said: ‘Bart, I can’t take this anymore, this can’t be sustained any longer. I don’t want to miss you, but I can’t do this anymore.’
Euthanasia
Bart didn’t want to anymore. As far as he’s concerned, his life was ended by euthanasia. A visit from his grandson changed his mind: ‘How can I tell him I love him and take his own life?’, he thought. “Then he will always have the feeling that I’m lying to him later. I can’t and shouldn’t do that to him.”
The decision turned Bart’s life around. As if it had to be, his psychiatrist pointed out a new kind of brain surgery in the AMC shortly afterwards.
brain surgery
It was about the so-called Deep Brain Stimulation. In short, this is a brain operation in which electrodes are placed at a specific location in the brain, which are connected to a battery under the skin. This allows small electrical pulses to be delivered to the tip of the electrode, affecting the brain.
Bart immediately thought: this must be the solution. “For years I had the idea that there was a switching error in my head, something that could not be corrected by therapy.”
Bart was the first Dutch over-65s to undergo brain surgery in 2014. At the time, he also saw some young people in hospital who were undergoing surgery. According to Bart, the operation itself, in which the electrons were placed in his brain, was not much. But he will never forget the day the device started working.
Bart went to the hospital with Ria. He walked into the psychiatrist’s room and took a seat across from him. “Are you ready, Bart? The stimulator is now on.”
Sense of life
Before Bart knew it, the big dark cloud full of obsessions, fears, stress, sadness and pain had disappeared. In one go, in one second, without having to do anything. Bart’s eyes started to glow. Ria didn’t know what she saw. “It was unbelievable. This was the most beautiful moment of my life, next to my wedding and my children.”
Deep Brain Stimulation
Damiaan Denys, head of psychiatry at the AMC, has been researching deep brain stimulation (DBS) for psychological disorders such as obsessive-compulsive disorder for many years. He sees with his own eyes the positive impact the surgery has on patients. “We started the operations in 2003. Since then we have treated about 120 people and we see a good effect in about 70 percent due to about 70 percent reduction in complaints. In 15 to 20 percent we see that the complaints disappear completely. Why the operation works better for some people than others is a question we’ve wanted to answer for 20 years. It’s still hard to say.”
Worldwide, brain surgery has been performed on about 500 people with compulsion and fear, while the surgery has already been performed more than 500,000 times for neurological disorders such as Parkinson’s. According to Denys, this has to do with the taboo surrounding performing brain operations on people with psychiatric disorders.
“Psychiatric complaints are said not to have much to do with the brain, they say. Parkinson’s is seen as a disease, but fear and compulsion are scary. That is very frustrating because it makes some psychiatrists hesitant to refer people. And that while people are so sick that three quarters want to die if they are not helped.” Bart had the latter too. He has written a book about his experiences: Operation Anxiety – How Deep Brain Stimulation Saved Me.
Bart regained his meaning in life. More than ever, he certainly wanted to live to be 100 years old. Enough time to fulfill his dreams: traveling to South Africa, taking piano lessons, studying law, buying a convertible and enjoying his children and grandchildren. “I think it’s very bad that I have hurt myself and other people for forty years. But I think it’s wonderful that I can live another twenty years as I do now.”
He does have the necessary side effects of the operation, such as sleeping less (maximum five hours) and restless legs. “But that doesn’t interest me in contrast to the happiness in life that I get back.”
Sunday interview
Every Sunday we publish an interview in text and photos of someone who is doing or has experienced something special. That can be a major event that he or she handles admirably. The Sunday interviews have in common that the story has a major influence on the life of the interviewee.
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