A breath of fresh air
You'll see the posters everywhere this week: two young men running across the sand on a wintry day, one in red, one in black. It's not the sort of image you'd expect from a film about a medical condition that ruins the lungs, but then Adem is not a conventional "disease of the week" film.
Local patients help filmmakers put together a realistic portrait of cystic fibrosis in new film Adem
Where Hollywood films about fatal illnesses tend to be cloying and sentimental, the Flemish Adem - about living with cystic fibrosis - is defiant and darkly humorous. For instance, when the lead character Tom meets his brother after a long absence, he gets a glimpse of his own future fighting the disease. Instead of getting emotional, he breathes heavily and cracks a Darth Vader joke.
This unconventional approach is fine with the Belgian Cystic Fibrosis Association, which was closely involved with the making of the film. "We think it's a great idea to make people aware and talk about CF, but in a totally different way," says its director, Karleen De Rijcke.
The film's target audience is certainly different from that usually addressed in the association's public aware- ness campaigns. "The young adult population is not so easy to reach, and this is more for the young, active and - how can I put it - fast-living generation."
Tom (Stef Aerts) is 17 when the story opens. He likes to party and hangs out with a tough crowd, a lifestyle he brings with him to the hospital. On this particular visit, he meets the older Xavier (Wouter Hendrickx, De helaasheid der dingen), who has lived a robustly active life despite his CF, and they strike up a competitive friendship.
At the same time, Xavier is trying to resolve his relationship with Anneleen (Marie Vinck, Loft). She wants children, but with Xavier they are certain to be born with CF. Romance also beckons Tom when he meets Eline (Anemone Valcke, Aanrijding in Moscou) across the glass divide of an isolation ward. As the months and years pass, these relationships evolve, just as the disease takes its inevitable course.
The team behind Adem (released internationally as Oxygen) comprises first-time director Hans Van Nuffel and Jean-Claude Van Rijckeghem, who also wrote and produced Aanrijding in Moscou and Man zkt vrouw. They approached the association early on to see how they could collaborate on the project. Introductions were hardly necessary, however, since Van Nuffel has CF himself.
"They asked our advice as medical specialists," De Rijcke recalls. "We read the script and immediately we thought it was a really good story. Even if it wasn't about CF, it would still be an interesting movie about making choices and living your life within certain circumstances."
Naturally compromises had to be made to tell a dramatic story in 98 minutes. Focusing on the characters' time in hospital gives a rather grim picture of life with CF and, as Tom's health worsens, it becomes clear that he is a severe case. "Luckily most people with CF in their early 20s would be doing better in Belgium," De Rijcke explains. However, the film is realistic. "I think that people with CF and the families here will recognise it as their reality."
As well as giving advice on the screenplay, the associa- tion helped the filmmakers and actors meet people with CF from different age groups. The resulting performances are very convincing. "When I see these actors I think of real-life patients," says De Rijcke. "The only thing that wasn't realistic was the way they coughed. Coughing is a typical symptom of CF, and you could hear that it was not like a real CF cough."
The solution was to record real CF patients coughing and dub the sound into the film. "We found people who were willing to do it! They realised that to be a good story it should be accurate."
The association also invested €50,000 in the film. "For us, it was a relatively large amount, but in the total budget of the film, it wasn't such a big deal," De Rijcke explains. "But [the filmmakers] said that it was quite important for them because it clearly showed our interest. It helped them to get support from other sources, knowing that the disease group also supported the project."
It's clear that the film will generate a lot of publicity, and De Rijcke is particularly keen for it to raise awareness of organ donation. Despite Belgium having a system where everyone is a potential donor unless they opt out, doctors still tend to ask permission of family members and follow their wishes. "Maybe the movie will make it an issue in families, and they will talk about it," she says.
Adem opens this week in Brussels and across Flanders
What is cystic fibrosis?
Cystic fibrosis (CF) is an inherited disease that affects the internal organs. Cells that usually produce fluids to lubricate tubes and ducts instead produce a thick mucous that clogs them up. In the lungs, this leads to breathing difficulties and frequent infections.
"It's a hard disease," says Karleen De Rijcke of the Belgian Cystic Fibrosis Association. "You have to fight against it, and there's a lot of treatment to undergo every day." While there is no cure, people with CF can live into their 40s and beyond. The outlook in Belgium is particularly good. "There are very few young children or even young teenagers who are not doing well."
The association includes 1,200 people with CF, thought to be every patient in Belgium. "We try to meet all the needs of people with CF and their families," De Rijcke explains. "That includes giving information about treatments, facilities and social administration. We try to make the public aware of what CF is and what people's needs are. And we also give actual support to families."
That includes financial aid for treatments, special foods and medical equipment, while in the most severe cases the association will pay the additional costs for lung transplants not covered by social security. It also supports specialist clinics and research on new treatments.