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IDFA 2019: MS and Lost in Memories

Two new Dutch films at IDFA assess the effects of crippling diseases from both scientific and personal perspectives. Geoffrey Macnab reports.

Patients need science and science need patients - but their interests aren't always the same. That is one truth foregrounded in poignant fashion in Suzanne Raes' new feature documentary MS, a world premiere in IDFA Masters. The film looks at Multiple Sclerosis from two points of view - the woman who has the wasting disease and a top scientist who knows everything there is to know about it apart from how to provide a cure.

Raes was originally approached to make a science documentary. At first, she was hesitant. "I said I am not interested in seeing people behind their computers or microscopes. Science doesn't happen in front of the camera."

Jeroen Geurts is among the most famous scientists in The Netherlands. Raes decided he would be a strong subject but wanted to find a foil for him, a patient who was roughly the same age and "a good match." When the director met Geurts, the scientist told her, "I always need patients to find new perspectives for my research." She told him she would find him a patient he could talk to "and ask anything you like to...and vice versa."

There are 17,000 thousand people with MS in Holland but everyone seems to know someone who has the disease. Eventually, she tracked down Lineke van den Boezem, an MS sufferer and also a successful screenwriter for Dutch television drama.

Geurts was fascinated by Lineke and at their first meeting they had an immediate rapport. "A year later, Lineke was in another state of mind. She said (to Geurts) you cannot help me," the director notes of the shifting relationship between her two protagonists. She had realised that science cannot offer her a cure. Geurts' attention wasn't just on her as an individual. He was thinking about the long term and the way in which her case might provide clues that would help the next generation.

For the director, there were ethical challenges in telling Lineke's story. "I tried to be as transparent as possible," Raes says of the way she approached the subject. "For me, it was important that they knew I didn't choose sides. Both their perspectives are really important. Patients should learn from science - and science should tell their story in the right way. And scientists really need to listen to patients. That is my most important ethical perspective, that there should be a bridge between these two worlds."

Another very intimate film touching on life changing illness is Ruud Lenssen's Lost In Memories, premiering in IDFA Competition for Dutch Documentary, in which the director chronicles his father's dementia and its effects on his family.

"When my father got diagnosed, in the beginning, I didn't think about filming it or turning it into a documentary. It was only afterwards, when I saw the impact of dementia on our family, especially on my mum, that was when I started thinking about it," Lenssen explains.

Most films about dementia are focused on the person suffering from the disease. The director wanted to shift the focus and to consider how others, especially the caretakers, are affected. As his father's condition worsened, his mother became more and more isolated.

Lenssen's father Jac had worked throughout his life in the fields. He loved his meadow, his poultry and his ponies. However, as his condition worsened, it no longer made sense for the family to keep the land. "In the beginning, his paradise, as we called it, was a comfort but it turned out to be much more of an obstacle for him."

There were uncomfortable moments. Lenssen found himself looking through the camera as his father threatened his mother and became increasingly aggressive. Strangely, though, when the camera was running, Lenssen was a quiet and unobtrusive presence who had a calming effect on his father. "The relationship between me and my father only got better by filming. I spent so much time with him. You have to be patient when you are filming, you have to be observant."

Lenssen made the documentary entirely on his own. It would have felt very strange to have been working on such an intimate and personal project with outsiders. His mother was initially wary about the film and what other people might think of her and her family. He explained to her that he was trying to show what caretakers experience when dealing with loved ones who have dementia. After a while, she stopped noticing the camera.

The director finds his own film difficult to watch and admits it will be "quite scary" to show it at IDFA in front of a big audience. "I think I can handle it but I am worried about my mum. She is just a regular lady from a small village and she is going to have so many people looking at her..."

Jac is now in a care home. When the son visits him, he encounters "a total different person" from the man he remembers. He says it is hard to finish the documentary. "I am a little worried because letting go of the film also means letting go of my father a bit. I am a bit afraid of that. This project was so beautiful for me personally. I am a little worried about finding a [future] subject that can compete..."

SEE NL Magazine #37 November 2019 / IDFA Issue
SEE NL is published four times per year by EYE International and The Netherlands Film Fund and is distributed to international film professionals.



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