Celine Dion has always been a beacon of strength and resilience, and her recent battle with stiff person syndrome (SPS) has only highlighted these qualities. The 56-year-old singer, known for her powerful voice and emotional performances, has found a new source of strength in her three sons amid her health struggles.
Stiff person syndrome is a rare autoimmune neurological disorder that causes severe muscle stiffness and spasms, making everyday activities challenging. For Dion, this diagnosis has been life-altering. She revealed to People magazine that her sons, René-Charles, 23, and 13-year-old twins Nelson and Eddy, have been her pillars of support during this difficult time.
Dion’s journey with SPS began with mysterious health issues in the mid-2000s, but it wasn’t until August 2022 that she received a definitive diagnosis. The symptoms, including debilitating muscle spasms and difficulty walking, had worsened over the years, significantly impacting her life and career.
“I barely could walk at one point, and I was missing very much living. My kids started to notice,” Dion shared. “I was like, ‘OK, they already lost a parent. I don’t want them to be scared.'” Her late husband, René Angélil, passed away from throat cancer in 2016, leaving her to raise their sons alone.
In a heartfelt conversation with her children, Dion reassured them, saying, “You lost your dad, [but] mom has a condition and it’s different. I’m not going to die. It’s something that I’m going to learn to live with.” This candid discussion helped her sons understand her condition and provided them with a sense of security.
Dion’s eldest son, René-Charles, has been particularly supportive. He escorted her onstage at the 2024 Grammys, where she received a standing ovation. This public appearance was a significant moment for Dion, who had been away from the spotlight due to her health issues.
Her battle with SPS is the focus of a new documentary, “I Am: Celine Dion,” which will be available on Amazon’s Prime Video starting June 25. Directed by Academy Award-nominated director Irene Taylor, the documentary offers an intimate look at Dion’s struggles and her journey to adapt to her new reality.
In the documentary’s trailer, Dion expresses her longing to return to the stage. “I miss it so much. The people, I miss them,” she says. Despite the challenges, she remains determined. “If I can’t run, I’ll walk. If I can’t walk, I’ll crawl … I won’t stop.”
Dion’s resilience is evident in her continued efforts to connect with her fans and share her story. She recently opened up about her health battle in an interview with Hoda Kotb for an NBC News primetime special. In the interview, she reflected on the challenges she faced while caring for her husband and raising their children, all while dealing with her own health issues.
“I did not take the time — I should have stopped, take the time to figure it out,” Dion told Kotb. “My husband as well was fighting for his own life. I had to raise my kids, I had to hide. I had to try to be a hero.”
Dion’s honesty about her struggles has resonated with many, and her documentary aims to provide a “raw and honest behind-the-scenes look” at her life. The film serves as a love letter to her fans, highlighting the music that has guided her life and showcasing the resilience of the human spirit.
In December 2022, Dion shared a tearful video on Instagram, revealing her SPS diagnosis. “I’ve been dealing with problems with my health for a long time, and it’s been really difficult for me to face these challenges and to talk about everything that I’ve been going through,” she said. The video was a poignant moment for Dion, who had kept her health struggles private for years.
The documentary also features archival and behind-the-scenes footage of Dion in her prime, along with new interviews where she grapples with her rare disorder. “My voice is the conductor of my life,” she declares in the trailer, although recently, “it’s been a struggle” to do what she loves most.
Despite her condition, Dion made a surprise appearance at the 2024 Grammy Awards to present the Album of the Year award. Her presence was met with a standing ovation, and she expressed her gratitude to the audience. “Thank you all, I love you right back,” she said. “When I say that I’m happy to be here, I really mean it from my heart.”
A source close to Dion told People that the night was amazing for her, and there is hope that she can continue to make more appearances and ease back into her career. Speaking to Vogue France, Dion shared her uncertainty about when she might perform again. “I can’t answer that… Because for four years I’ve been saying to myself that I’m not going back, that I’m ready, that I’m not ready,” she said. “As things stand, I can’t stand here and say to you: ‘Yes, in four months.’ I don’t know… My body will tell me. On the other hand, I don’t just want to wait.”
Celine Dion’s journey with stiff person syndrome is a testament to her strength and resilience. Her sons have been her source of inspiration, and she continues to fight for her health and her passion for music. “I Am: Celine Dion” premieres on Prime Video on June 25, offering fans a deeper look into her life and struggles.
