When Magda Hueckel's son was born with the rare genetic disease know as Ondine's Curse, she and her partner, filmmaker Tomasz Sliwinski together channelled what has been described as the darkest time of ther lives in the Academy Award nominated short-length documentary "Our Curse" (2013). In our interview Magda speaks about the film's impact and turning the lense on and recollecting the memory of largely forgotten late Polish-born artist Krzysztof Niemczyk.
C-P: It’s great speaking to you Magda and I’m still a bit high from our recent conversation during a visit of yours in Stockholm for the screening “Our curse”. It’s in many ways a remarkable project shining light on your own domestic situation raising a newborn baby boy with a still very rare medical disease, Ondine’s Curse, and by doing so raising much needed global awareness for it. Give me a little background into the film.
M.H: Our son, Leo was born in December 2010 with an ultra rare genetic disease CCHS, commonly called Ondine’s Curse. Is a very rare and serious form of central nervous system failure. CCHS patients stop breathing while asleep and require lifelong use of ventilators. The name is a reference to the myth of Ondine, a water nymph who put a curse on her unfaithful lover that he would stop breathing upon falling asleep. Because my pregnancy was progressing very well, Leo’s diagnosis was completely unexpected. We were in shock. It was the darkest time in our lives. The prognosis was gruesome: that Leo won’t be able to breathe, eat, digest, walk, speak…
When Leo was born Tomek, my husband, was in film school and he had to make a short movie for his exams. At that time we used to spend all our days in the hospital, all our thoughts were occupied by Leo, everything else just did not exist for us. So Tomek made a short movie combining shots from my pregnancy and a new born Leo in intensive medical care. The film was called “The Curse” and it was 6 minutes long. This short documentary was noticed by a very good documentary director who said that it was so good that we had to expand it.
C-P: You’ve been travelling for about two years with the film and you were telling me how at every screening where you’re present for a talk, the first question will unfailingly be; How’s Leo? On that note it occurred to me to ask if ultimately despite the more selfless rewards of the project, it was still a difficult decision to embark on the project?
M.H: I still remember when Tomek came back home after the screening of the first movie “The Curse” and told me about the idea of continuing the film. He was full of doubts and was rather against it, at the beginning. I was more open, because it was a kind of test for me. I am a visual artist; I used to work with self-portraits a lot. I was analyzing my fears, emotions, obsessions and so on. I knew that if I do not decide to undertake the movie portrait in that difficult moment, all my previous work will loose authenticity for me and I would perceive myself as a coward. Moreover I knew that we had to do something creative at that time, otherwise we would go crazy with all the doctors, nurses, medical equipment, diagnosis, examinations, hospitals, bad news and so on. Finally we decided to film that and ourselves and if we found the material to be too intimate, we would not show it to anybody.
We decided not to invite a camera operator to the project to make it as honest and authentic as possible. So we sat down on the sofa and started filming. We were documenting all our conversations, difficult and cheerful moments for over half a year. We kept working until the moment that everything was already said and we realized that it was the time to finally start living as normally as possible. Then we stopped filming. We put away the recording material for over one year. And after time had passed, we watched it and decided together that it was universal enough to show it to an audience. But the whole editing process was a nightmare. The film was finally ready in 2013.
The first screening in Poland was extremely difficult for us. The audience was in shock and we had no feedback at all. But then we went to Locarno Film Festival and to IDFA in Amsterdam and the enthusiasm of the audience was really unexpected and blew our minds. Since that time the movie has been shown all over the world at more than 70 festivals, and received more than 30 awards, including an Oscar nomination in 2015.
C-P: The way you went about distributing the film, selling rights to the New York Times, allowing it a more widespread accessibility, I imagine was definitely the right way to go.
M.H: As a result of the Oscar Nomination we received many distribution proposals, including sharing the movie in New York Times Op-Docs platform. Sharing the movie for the public on such a scale was a very difficult decision for many reasons, but after a couple of days we knew that we made a right choice. The movie had 1 million views in one week. It was an incredible moment for us. We realized that our private story,--our movie--had completely changed the level of CCHS awareness. There is nothing more important concerning any rare disease – to be recognizable.
C-P: What has been some of the impact that the film has had? I understand the first reported case relating to the disease in Africa occurred only after your film was released?
M.H: The movie was very successful from the beginning but the nomination changed everything. After putting the movie online we received dozens of emails from CCHS families, doctors, parents of other children with disabilities and other people even not connected with any form of disability. Among them there was an email from a CCHS father from South Africa. He found the movie, found our blog (www.leoblog.pl/eng) and it helped their doctors diagnose their child. It was a first CCHS child diagnosed in Africa. We have a very personal connection with this continent and have visited 14 countries in Africa searching for rituals and spirituality. I have even published a photographic book “Anima: Images from Africa”.
But the all those emails and raising CCHS awareness is not everything. One day Melinda Reccitelli from US CCHS Association contacted with us with the idea of starting to raise money for research to find a cure for CCHS. As a result of the success of our film, the US CCHS Association decided it was the time to finally establish a CCHS Foundation for this purpose. She asked us if they can use our movie as a promotional tool and if we can work with the foundation. We agreed enthusiastically, became Regional Coordinators of the CCHS Foundation in Poland, and few months later, established our own Polish CCHS Foundation with Anna Palusińska, another CCHS mother from Poland. The Polish foundation is called “Lift the curse” and of course it is a direct reference to the title of our film and the disease. Together with other foundations and associations all over the world, we are raising money for medical researches on CCHS. We believe we will find the cure!
C-P: You’ve begun shooting a new film project about a largely forgotten Polish artist, Krzysztof Niemczyk, weighing on the stories notably of his sister and lover. It makes me think of the fascinating discoveries in modern-time of artists like Vivian Maier and Hilma af Klint. There’s of course something very universal about the story I imagine you might be telling, about the notion of memory; how it’s constructed and reconstructed. So many artists leave behind a legacy that is remembered and celebrated and just as many, if not more, do not. What can be said of Niemczyk?
M.H: Krzysztof Niemczyk is a remarkable example of an artist who was extremely popular at one point of his life, in late 60s, and then he was completely forgotten. In Poland, Niemczyk remained virtually unknown, even though his novel “Courtesan and chicks” published for the first time in France, was hailed one of the most outstanding works of Polish literature of the 20th century. A genius for some, a madman for others, Niemczyk aroused extremely varied emotions and memories. He was persecuted by the state authorities, served time in prisons and resided in psychiatric hospitals. The artist died in utter poverty, forgotten by everybody.
The purpose of the documentary film "The study of chaos" is not just to remind viewers of the biography of Krzysztof Niemczyk, but mainly to show the silhouette of a brilliant misfit, a radical artist, whose attitude was a challenge to reality, society, and the political system. What causes some people to perceive him as a great and independent artist, while others, with astonishing stubbornness, refuse him that status, treating him as a kind of freak? This subject appears to be extremely important in the current situation in the world, radicalization, the emergence of oppressive systems and the revival of nationalism. We believe that the story of Niemczyk can become a kind of universal novel about the artist: cursed and heroic, misunderstood and pioneering.
C-P: You have a background in set design and your affinity and relationship with the stage and theatre is present in your work as a visual artist. Your photographic images from theatre productions are visually very outstanding I think, and makes for an interesting fashion of recontextualizing art.
M.H: Theatre photography is my main job. I also do my own photographing projects – I exhibit a lot, I take part in photography festivals, I have a number of publications. One day I realized that I live in two completely separate words – the visual art world and the theatre world -- and that my theatre work is completely unknown to those who are familiar with my personal projects. I started to analyze it and realized that theatre photography is completely marginalized in general. So many books have been written about all kinds of photography – still life, fashion, portrait, war, travel, sport, conceptual photography, but there is nothing about theatre photography (there are photography books about particular theaters, directors, actors).
So I decided to make a book and an exhibition concerning my photography work from theatre. I asked the Polish Theater Institute and The Foundation for Visual Arts for help and, as a result, we have a huge book “Hueckel/Theater” presenting my photographs from the most important Polish plays. The photographs are presented according to a special narration created by art curator Wojciech Nowicki and me. I used images from the work of other artists to tell the story of contemporary theatre and culture, but mainly of the condition of the human being in the contemporary world. It is a story about the human body, which is exposed to radical experiences of ecstasy or suffering. It is a story about alienation, incapability to communicate, loneliness and solitude.
C-P: On the note of theatre, yet another upcoming film project of yours sees you telling the story of a theatre troupe of performers mostly affected by Down ’s syndrome.
M.H: Tomek and I were invited to make a documentary movie about Theater 21 – a theater group in which all actors suffer from Down syndrome. For me it was a very interesting proposal not only because of theater subject but mainly because it is about living with disability. Unfortunately we still live in a world where disabled people are marginalized. Societies are ghettoizing people who are different. Here we have a great chance to allow them be seen, to know their stories, their world and I hope to point out how disabled and different people are important for our societies. We can learn a lot from them.
C-P: I imagine your film work will keep you busy in 2016…what are you up to in the next couple of months?
M.H: I am finishing my personal new personal project now. It is a continuation of “REM Cycle”, which I made in 2010. It is a very personal series about fears and intuition. I am trying to fix something I destroyed 5 years ago. It is about the relationship between art and life. The premiere will take place in April at a group exhibition curated by Marta Ryczkowska. I am also working on huge theater photography exhibition, which will take place in Krakow during the month of Photography. We are working with Tomek on three new movies and of course the Polish CCHS Foundation: we are working on a project “Art for breath” which aims to raise awareness for CCHS and raise money for CCHS research. When we finish all of those ideas we will go on 3 months vacation and do nothing.
C-print would like to thank the Polish Institute in Stockholm for its kind help.
All images courtesy of Magda Hueckel
1) From the series Calmed Self-Portraits (2005-)
2) Promotional poster "Our Curse" (2013, original title: Nasza klatwa)
3) REM Cycle, Atrophy IV (2010)
4) From the book "Hueckel / Teatr" (2015). From "Sprawa Gorgonowej" (The Gorgonza Case), directed by Wiktor Rubin; Narodowy Stary Teatr im. Heleny Modrzejewskiej, Kraków, 2015.
5) From the book "TEATR" (2015). From "Poczet Królow Polskich" (The Gallery of Polish Kings), directed by Krzysztof Garbaczewski; Narodowy Stary Teatr im. Heleny Modrzejewskiej, Kraków, 2013. 6) From ANIMA, Peregrinatio | Images from Africa (2013). Pictures were taken between 2005 and 2013 during numerous trips by Magda Hueckel and Tomasz Śliwiński to Africa (spanning such countries as Algeria, Benin, Democratic Republic of Congo, Ethiopia, Kenya, Lesotho, Mali, Morocco and others). 7) ANIMA | Transformation III #07 (2013)
To learn more about Magda Hueckel's work, please visit:
www.hueckel.com.pl