Tomasz Sliwinski hasn’t had a lot to smile about in recent years, staying up with his wife Magda every night to tend to their son Leo, who was born with Ondine’s curse, a rare respiratory disorder where breathing isn’t automatic and ventilators are required to help one get through the night. Still, he couldn’t help but laugh a little when he was urged to submit his first film, “Our Curse,” about the family’s struggle for Oscar consideration after a celebrated run on the festival circuit.
“I thought it was a joke that I was filling out this form for the Academy because I didn’t really expect anything,” says Sliwinski, who just celebrated his son’s fourth birthday in Poland. “This is the most amazing thing because we were basically doing [the film] for ourselves.”
All the success “Our Curse” has had is likely due to the fact that Sliwinski made the film with that intention, clearly pouring his heart and soul into the 27-minute documentary that details the six months immediately following Leo’s birth. Catching Sliwinski and his wife at first anxiously pondering their son’s future and then showing the gradual process of the couple learning how to take care of him, the film is made with remarkable precision, filled with long takes that convey the frustration and fear of parents unsure of their child’s fate every second of the day yet also allows for the elation that emerges when their tireless care results in Leo becoming a full-fledged member of the family.
After “Our Curse” made this year’s Oscar shortlist for Best Documentary Short, Sliwinski spoke about the difficult decision to turn the camera on himself and his wife, how making the film was a necessary diversion and how the response from audiences have helped him carry on.
Why did you decide to turn the camera on yourself?
It’s not the first thing I decided because at the time, I was in my first year at film school when my son Leo was born. First, I made a very short film which was six minutes long and documented the period when Leo was in the hospital, but it was not a personal film. It was more about expectations for a child and I combined it with some shots of the pregnancy of my wife, but [as time went on] I said “Stop, I don’t want to continue, it’s too personal for me.” Then a friend, a documentary director, kept encouraging me to focus the camera on ourselves because we are just in the middle of an [important] story. As I told you at the beginning, I didn’t want to do it because I thought it was too emotional, too private, but then he said you don’t have to show it to anyone. So we decided to try. We started filming two months after our son was born and our first shot in the film is really the first shot that we did of ourselves.
That scene on the couch is incredibly raw.
Well, this is the way we just spent our evenings at that time. During the day, we spent all of the time at the hospital because Leo was in the hospital for five months, so in the evenings, we were just sitting on the couch discussing things. We just put a camera on a tripod and began filming ourselves, but it was our normal situation. It wasn’t done especially for the movie.
Was your wife okay with filming from the start?
She was more okay than me, to be honest. [laughs] But my wife is a photographer who’s worked on many self-portraits, so she’s very used to doing personal stuff. I think I was the one who had more objections to filming, but we made those decisions together so she felt very comfortable.
There’s a focus on the equipment that helps Leo – did filming this give you an understanding of what he was going through?
The whole process of filmmaking helped us a lot during that time. I don’t know how we would’ve survived this period if we weren’t making a movie about this because it helped us to focus our energy on something creative. Also, the way we were filming also somehow expressed our feelings towards Leo and the whole situation. At the beginning, I really found that I didn’t want to film Leo so much as normal parents do. I was more focused on the equipment because it totally overwhelmed us. The only thing we could see is the ventilator machine, the pipes and the sounds that it was making, so by filming, it gradually changed our perspective from the equipment towards our son. It took us a while to see our son in this.
You also gradually go from being alone to having family around. Did that reflect what actually happened?
Yes, you are really left on your own with everything. The doctor just brings your son with the equipment to your home and you have to cope with everything by yourself. So at the beginning we felt very lonely, especially because our family doesn’t live in the same city as we do. But the whole process of filmmaking was the way we really felt at that time. We stopped filming the whole situation after half a year when we noticed we changed a lot. We would sit on this couch and there was no longer anything left to talk about. We just had to start living as normal as possible, but it took us a while. The filmmaking was a process to accept everything that happened to us and to let other people like our family back into our lives.
Was it difficult to revisit when you went to edit the film?
Yes, editing was the hardest part and it took me a while. I felt tI had to edit the film because it’s my story, but at the same time, I had to somehow detach myself emotionally from the story. It was really a bit painful for me to go through all these moments again and to be objective to see which scenes fit in the film, but I wanted to follow our our emotional process as closely as possible. It took a year-and-a-half to finish the editing. Then when I had the final cut, I decided to show it to some other people and have an external editor who just helped me to clean things up because of course there were many scenes that were so personal for me that I didn’t really feel I’m the person who should decide which ones should stay and which not.
Did you originally go to film school to make documentaries?
I was very focused on documentaries, but during film school, I became more focused on narrative filmmaking, so I think I’m in between. The thing that mostly interests me now about filmmaking is this intersection between these two genres.
How did you decide on the song, The Twilight Singers’ “Number Nine,” that plays over the montage at the end?
This is also a personal story. Straight from the beginning, I knew the film had this way because that was actually the song that my wife and I danced to during our wedding, so it had a double meaning. We are still together, now three of us, dancing to this song, therefore I really wanted to keep this song in the film.
How’s Leo doing?
He’s doing great. He just turned four yesterday, so he’s quite a big guy. Of course, the problem still persists and right now it’s incurable, but it’s much easier now. Older children sleep in a more comfortable way, so it’s easier to cope with. He also has some problems with speaking still, but we’re working on this and apart from that, he’s developing very well.
I’m glad to hear it. What has it been like to share this film with audiences?
It’s an amazing experience. Of course, at the beginning, we were a bit afraid of how the audience would react because as I told you, I didn’t really know there was going to be a movie. I just said, “Let’s start filming and see what will come out of it.” But the story is not only our personal story, but it also became a bit universal about the process of coping with any obstacle that can happen in your life. In so many different countries and so many different places, people relate to our story and our experience, and lots of people want to share their personal stories, not only related to having disabled children, but to anything they thought would be unbearable and they succeeded. Many people said that this film gave them strength, so it’s really rewarding to travel with this film.
“Our Curse” is now available to be watched as a New York Times Op-Doc here.