On June 25th, Prime Video will release “I Am: Celine Dion,” a documentary by Irene Taylor that provides an intimate look into the renowned singer’s private life and her struggle with a debilitating illness. In late 2022, after a prolonged period of absence, the 56-year-old Quebec star disclosed that she had been diagnosed with stiff-person syndrome, a rare neurological disorder causing muscle stiffness and severe spasms. This chronic illness forced her to step back from her career and limit public appearances.
Since early this year, Dion has been gradually re-engaging with the public, offering reassurance to her fans. However, in a heartfelt interview with Hoda Kotb on the Today show, Dion revealed a startling truth: she had been battling the disease for 17 years.
Years of Denial and Silence
During the interview, Dion confessed to years of denial and secrecy about her condition. “I couldn’t take it anymore,” she admitted. “What were you expecting me to say? I have… what? We didn’t know what was happening,” she explained. Dion reflected on the difficulty of balancing her career, raising her children, and supporting her husband René Angélil during his battle with cancer, which he lost in 2016. “I tried to be a heroine, but I felt my body failing me while I clung to my dreams,” she said. The burden of lying to those who supported her became too heavy to bear.
The Pain of Stiff-Person Syndrome
Dion described the physical agony of stiff-person syndrome. When asked by Kotb what it felt like to try to sing, Dion compared it to being strangled. “It’s like someone is pushing your larynx pharynx in this direction,” she said, pointing to her throat. “You get a spasm. It started here. And I thought, ‘It’s okay, everything will be fine.’ But it can happen in the abdomen, the spine, the ribs.”
She further explained, “I feel like if I point my toes, they will stay in that position. Or if I’m cooking – because I love to cook – my fingers, my hands, will stay in that position… It’s like a cramp, but it’s in a position where you can’t unlock them.” The spasms can be so severe that they break ribs, something Dion has experienced firsthand. Despite these challenges, it took years before she received a correct diagnosis.
“I Am: Celine Dion” not only chronicles her illustrious career and personal life but also sheds light on her resilience and determination in the face of a challenging illness. Through this documentary, Dion hopes to raise awareness about stiff-person syndrome and inspire others facing similar struggles.