They watch football together. Mariëtte van der Voet, her sons Pim and Sam, daughter Eva and ex-husband Geert-Jan. It is May 15, 2019, the last day of the Eredivisie that year. They are in Pim’s room, his couch is turned towards the television. More than a year earlier, Pim was diagnosed with leukemia. Treatments have not worked. He has continued to deteriorate. He can no longer walk, his vision is bad, he has decided to end his life. Still, he still wants to watch football with his family. Seeing that Ajax becomes champion, and ADO Den Haag – the club from his city – beat Willem II 6-2.
“Through what we went through together, I realize that sport can be so important for people. And how strange it is that sport and exercise are so often not given a leading role in our society,” says Van der Voet, who retired this month as secretary-director of the Dutch Sports Council, an important advisor to the cabinet.
After the death of Pim, Van der Voet wrote a moving book about her son’s disease process. super brother, after the nickname Pim’s sister gave him during the illness. It’s about the diagnosis (“I want to stay the night. I don’t know how Pim will react if the awareness is there”), the physical and mental consequences of the heavy treatments (“He is in survival mode. There is no real contact possible. When he talks to you, his voice comes from afar”), the bond between mother and son (“I shave Pim’s last hair with the clippers and my son bows his head in despair”) and does not hide anything, until the half drunk glass of chocolate milk that remains in Pim’s bedroom after being euthanized on May 16, 2019.
22 kilos lost
The book also makes clear how important sport was to Pim. He often went to the gym with friends, he liked his broad shoulders and big chest. These disappeared fairly quickly after his treatment began, but his fitness also helped him to endure intense chemotherapy and a stem cell transplant. He even went to the gym between chemotherapy. He was the only one allowed by the staff to wear a cap to hide his bald head. Sport helped him to control his impulsive nature and tantrums when they got him into trouble, especially during puberty.
Exercise could also have helped him during his illness, but the hospital turned out not to be open to it. While Pim wanted to exercise, there were actually no options for that. He lost 22 pounds in one week and all the muscle mass he carefully built over the years. Even daily exercise was banned from his life by the doctors. In the hospital the thought seemed: you is here, nothing more.
When Mariëtte van der Voet went for a walk with her son, she even got a scolding from the staff. It was thanks to the kindness of one physiotherapist that Pim was sometimes allowed to exercise in a room with some fitness equipment that were used for physiotherapy. A creative solution in fact, because the physiotherapist kept an eye on him while she was treating other patients (who were reimbursed by the health insurance).
This discussion does not play a leading role in her book, but when Van der Voet was asked to give a talk to healthcare administrators some time after Pim’s death, she wanted to be able to tell more about it. She had many questions. Was this the case in every hospital? Were other hospitals aware of the importance of exercise?
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The Dutch Sports Council also thought it was an important subject and it was decided that Van der Voet would investigate it together with a colleague. To do this, they conducted interviews with hospital staff across the country.
The results of that study have yet to be released. But when she left the Dutch Sports Council, she wrote extensively about it in a farewell column. The preliminary conclusions are not cheerful. What Pim experienced can happen in most hospitals. Even worse, says Van der Voet: their experiences in healthcare are typical of the way society views sport.
How has Pim’s illness changed your view of sports?
“I was already working on it a lot at the Sports Council, of course, and I always took my children everywhere. Beach volleyball, tennis… if there was a grandstand somewhere, I wanted to go there. So I knew how nice it was, but that it is so important I only realized then.”
How did you notice that?
“Sport was a means for Pim to keep getting back on top after a tough period of treatments. When he went to the gym again, I knew (she clicks her fingers): We’re in the elevator again. The periods when he was physically unable to do anything were terrible for him. He eventually became paralyzed. His brother Sam is a bit more intellectual. He said, Mom, I might have wanted to live in a wheelchair, because I also like to read books and things like that. But that was not the case for Pim. When he realized that he wouldn’t be able to walk anymore, it was done. That was the dividing line between life and death for him.”
“Sport also connected him with others. He had friends at the gym and at the football club, often watched sports with yet another group of friends. I also saw that during his illness: what a bright spot it can be to Studio Sport to be able to watch, to be able to look forward to something. Like that last day in his room with our family. It was also extremely so with the Champions League, when Ajax reached the semi-finals in 2019 and was eliminated by Tottenham Hotspur. If they had made it to the final, Pim would have postponed the date of his euthanasia. Then he died two weeks later. That you don’t want to die until you know how it ends…wow.”
Still, sports disappeared from his life when he got to the hospital.
“To begin with, Pim thought: why do I have to lie in bed all the time? He only had jeans with him when he first hospitalized in 2018. That is of course not comfortable. But it’s all about the bed. While you are not that sick at all in the beginning. Then why do you have to lie down? He soon asked if there was an exercise bike or something like that. Not so. We were lucky that that one physiotherapist wanted to make a private appointment, so that he could exercise if he was fit enough.”
Why was it stopped?
“I started to wonder about that later. It turned out that physiotherapy is not included in the insurance for the treatment of leukemia. It has never been proven that a leukemia patient benefits from exercise, so there is no money available from health insurers. That is part of the system, while it was very important for Pim’s well-being. Sports belonged to who he was. That was taken from him. This is the case in all hospitals, according to our study. You have to be lucky everywhere that someone unofficially arranges it for you.”
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Is it about money or is it also a cultural issue?
“Both. As a patient, for example, you spend many hours a day waiting for the attending physician. You never know when he will come along, while of course you want to know how your own treatment is going. Many people don’t dare leave the room for fear of missing the doctor. Well, if there’s one thing that’s easy to fix, this is it. Leave your phone number and the doctor can call, right? There’s a lot of fear anyway. That we were not allowed to walk had to do with that. There was literally a yellow line around the hospital that you were not allowed to cross as a patient. Suppose Pim had fallen over there… all very convulsively, also for fear of claims for damages, I think.”
Does it ever go well?
“In our research, we looked for good examples. Then you come across loners who persevered against the tide, the madmen who made sport possible after all by arranging money from all kinds of jars or nagging the board to arrange something. In the OLVG in Amsterdam, for example, a nurse was very fond of sports and has set up a sports hall for oncology and haematology patients. The Máxima Children’s Hospital in Utrecht, for young cancer patients, has a great interior. That’s where life goes on. Children go to school, can exercise in the playground. It is often possible for children. But Pim was eighteen-plus, there was nothing for him.”
Why did you want to do this research after his death, while it always reminds you of Pim?
“He’s gone, but I can still help people like him. I want to wake people up. Pim is unfortunately not a unique example. Sport is a key element in healthcare, but in education there is little physical education, and municipalities do not give enough thought to movement when constructing public space. The system we have created together often prevents exercise and sports.”
How do you think that is?
“Sport has traditionally been a personal choice, a hobby that people organize themselves. Governments have always looked at it that way, so they have never officially arranged it. But gradually we know how important sport and exercise are. It makes you healthier – it’s not for nothing that we have exercise guidelines for minimal effort per day. Nevertheless, the municipalities are still legally required to offer a library to residents, but if the swimming pool closes – current with the rising energy prices – citizens will not have a leg to stand on. That is a chronic lack in society.”
What do you hope to leave behind at the Dutch Sports Council?
“The Sports Council issued an advice to the cabinet in 2020 stating that sport should be recognized as a public facility. Almost half of the Dutch population does not exercise enough. That is bad for health – we have seen that very clearly with corona, because people who exercise are more resilient. The government must recognize this and facilitate sport and exercise, I hope to have contributed to that. In fact, my story, about Pim, is also about that. It also shows that we still have a long way to go. But I think it is inevitable to give sport a central role in our country. The value and significance of sport and exercise are so great. No one can get around that anymore.”