Marieke Vervoort died aged 40 on Tuesday 22 October 2019 about 8.15pm. She was at her home in Diest in north-eastern Belgium, her parents and loved ones at her bedside, following a small party with friends. It all was exactly as she had planned.
Vervoort, a world-record breaking Paralympian with an incurable, degenerative condition that caused her agonising pain, chose to die under Belgium’s euthanasia law. Now a documentary film on release in her native Flanders recounts the story of her final years and how she chose the moment of her death.
Pola Rapaport, a Franco-American documentary film-maker, stumbled across Vervoort’s story when she read a newspaper article about the Belgian athlete during the 2016 Rio Paralympics. Vervoort had won a silver and bronze in Rio in the T52 400m and 100m wheelchair races, adding to the gold and silver she claimed at the London Olympics four years earlier. But many journalists only wanted to know when the athlete would die, after the international press had picked up on a Belgian media report that she had filed her euthanasia papers.
“I’ll go for gold, then kill myself,” blared the headline of one British tabloid. The reality was somewhat different, Vervoort explained to the world’s media in Rio. She did not plan to die within a fortnight of leaving the medal podium, but had signed her papers for euthanasia in 2008, an act she said had saved her from suicide. “With euthanasia you are sure that you will have a soft beautiful death,” she told reporters. There is a feeling of peace, a feeling of rest on my body that I can choose how far I will go.”
Rapaport was immediately compelled. “I was so moved and so intrigued by someone young, beautiful, an amazing sports woman, who saw that her disease eventually would take her to a point where she would die younger than most people,” she told the Guardian. “And she saw that the right to choose her destiny, whatever it may be, gave her so much emotional liberation, that she could live her life fully from that point.”
Vervoort was 14 when she first started experiencing symptoms of what would later be diagnosed as an incurable degenerative spinal condition that caused paraplegia.
In the film, she recounts how she contemplated suicide in 2007 as her condition deteriorated, preventing her from taking part in the ironman and triathlon competitions “which were my life”. After going through a lengthy procedure, which she said required the consent of three doctors and talks with a psychiatrist, she got her euthanasia papers. “It was like something heavy fell off me,” she recounts in the film. “You have got your own life in your hands and you can say when is enough”.
Belgium is one of a handful of countries where assisted dying is legal. Conditions are strict: the person must be “in a medical situation without hope” and state of “constant and unbearable” physical or psychological suffering that cannot be eased. It must also be proved they have the mental capacity to make the decision and are not subject to external pressure. In 2021, 2,700 people ended their life by euthanasia, although unlike Vervoort the vast majority were over 60. Only 1.5% were under 40.
Although widely supported in Belgium, the law is not without critics and some people have mounted legal challenges when they believe their relatives were wrongly helped to die.
Rapaport, who lives in New York, went with her husband and film-making partner, Wolfgang Held, to Vervoort’s home in Diest, eastern Flanders in December 2016. They talked for hours. “It was a very, very good interview,” Rapaport recalled. The challenges and ethical dilemmas of making the documentary were spelt out at that first meeting when Vervoort had a seizure and fell unconscious. “She was having trouble breathing and I wasn’t sure if maybe she was dying in front of us. It was quite terrifying,” Rapaport said. Eventually, after help was summoned, Vervoort revived and made clear she wanted a film to be made that included such painful and personal moments. “Would she let us make a truthful and very deep portrait of her, not a puff piece,” Rapaport recalled. “She said yes on day one.”
Filming continued over three years, as Vervoort’s condition worsened. At one point in the film she notes: “Now I am 38, I should be in the prime of my life, but all of my movements cause pain.” She was also going blind and having ever more frequent and debilitating seizures. Back in 2016 Vervoort had told the BBC: “It can be that I feel very, very bad, I get an epileptic attack, I cry, I scream because of pain. I need a lot of painkillers, valium, morphine.”
The result is a 90-minute intimate portrait of Vervoort, as she navigates her final years. With bottle-blond spiky hair, Vervoort is sharp, adventurous, with an acerbic sense of humour. “The next party will be my funeral,” she jokes with some of her friends. On screen there are jubilant, thrill-seeking highs: bungee-jumping in her wheelchair, indoor skydiving and racing a Lamborghini with the Belgian driver Niels Lagrange, drinking cava with friends. There are lows that are hard to watch: Vervoort pale and unconscious on her sofa as her worried parents try to help her, or in hospital hooked up to machines grimacing with pain.
The film is also a portrait of her friends and family, who struggle with her decision. “I accept what she wants to do but I don’t actually like it,” recounts one friend on a visit to a rocky promontory on the Lanzarote coast where Vervoort had chosen to scatter her ashes. At another moment, her father says he no longer wishes to live at the Belgian coast “when you are somewhere scattered in the sea”.
And then unfold her final days. From early on it was agreed Vervoort’s death would not be filmed. At her final farewell party, Rapaport places her camera at the back of a room, capturing the last goodbyes and awkward silences, then the arrival of the doctor to carry out Vervoort’s last wish.
For the film-maker it was a unique project. Vervoort’s death was end of the project, but also the loss of someone she had come to know as a friend. “Yes, I knew her. I loved her. We had great times together,” Rapaport said. But it wasn’t a typical friendship. “The whole relationship was predicated on this decision that she had made … It was always in the background of our talks, our shoots, of everything. That was where she was heading.”
Rapaport, already a supporter of the right to die, hopes to bring Vervoort’s story to an international audience. The film-maker sees euthanasia as a human right.
“Absolutely, people should have the right to say whether they want to have a doctor help them at the last moment. If they’re going to die anyway, this is not suicide,” she said. The right to die saved Marieke Vervoort’s life, the director said: “She was gathering her pills together at age 29. She lived an extra 12 years, with great joys and highs and did wonderful things.”
