Celine Dion struggles with Moersch-Woltmann syndrome, also called the stiff man syndrome. It is an incurable autoimmune disease that manifests itself, among others, pain and progressive muscle stiffness and repeated episodes of muscle spasms.
This is a very rare disease that It manifests itself as pain and progressive muscle stiffness, which also makes walking difficult and significantly limits the ability to sing. According to statistics, up to two in a million people suffer from it. The changes in the form of spasms intensify over months and years, and stabilize over time. The rarity of the condition means that most people affected by it wait a very long time before they are properly diagnosed.
The Canadian star publicly announced her illness in 2022, when she was forced to cancel her tour (including two planned shows in Poland). “I’m working hard every day to regain my strength and ability to perform again. All I know is singing. It’s what I’ve done my whole life and it’s what I love doing the most,” she said at the time.
The documentary shows the struggle with the stiff person syndrome “I am: Celine Dion”available from June 25 on Prime Video.
“Is it possible for you to make a film with only my voice, without the voices of others talking about me?” – this was one of the first questions that the director asked Irene Taylor heard from Celine Dion. The singer, deciding to appear in the documentary dedicated to her, did not just want to talk about her successful career. For the first time in a long time, she wanted to tell the world the truth about her illness.
“She finally got to the point where her body was just falling apart. She couldn’t handle the amount of medication she was taking to function,” Irene Taylor told Variety.
The director revealed that the most poignant moment while working on the film was when Dion suffered a muscle spasm attack during filming. At first she didn’t know if she should turn off the cameras then. She later explained that she decided to continue recording because she knew that there were specialists nearby who knew how to react in the event of such an attack and how effectively they could help Dion.
“Everyone was doing their job. Then I realized that I also had a job to do. I didn’t know what we would do with the material, but I was going to keep shooting. I was doing it for her, because during the eight months of work she never once asked me to turn off the camera. On the contrary, she kept saying, ‘Don’t ask me for permission, just do it.’ Although I felt uncomfortable as a human being, as a director I believe in the power of the fact, of the image that shows what happened,” she explains.
From the 50-minute-long video, the director selected about a five-minute clip that she then showed Dion in the context of the entire film. Although Taylor had some reservations about choosing too intimate, too powerful shots, showing the singer at her most vulnerable and suffering, Dion insisted that the fragment had to resonate in the film.
“The first thing she said was, ‘I think this movie might help me.’ Then she quickly added, ‘I don’t want you to cut this scene.’ I knew which shot she had in mind, and I think I even pushed her to cut it. she thought about it. I asked, ‘What about the part where you’re crying and they put something in your nose?’ She said, ‘I told you I don’t want you to cut it out,'” added the director of the documentary.
It has just been revealed that Celine Dion has decided to make a generous donation to the University of Colorado Anschutz Medical Campus in Colorado, which specializes in research on stiff-man syndrome. The five-time Grammy winner has donated $2 million to the cause. The research project is led by a renowned neuroimmunologist Dr. Amanda Piquetwho personally supervises the treatment of the stage star.