Almost two decades ago, Celine Dion started noticing something strange happening to her body. At first, it felt like a simple cold creeping in—a slight discomfort in her throat. But as time passed, the symptoms grew more alarming. Her once-perfect singing voice began to falter, her vision blurred unexpectedly, and she found herself struggling to catch her breath. In moments that were truly terrifying, her body would stiffen uncontrollably, causing painful muscle spasms that left her shaken. For Celine, this was the beginning of an unexpected battle with stiff-person syndrome (SPS), a rare neurological disorder affecting just two out of every 100,000 people.
In the new documentary I Am: Celine Dion, the global superstar reveals the intimate details of living with SPS. Now 56 years old, Celine reflects on how she's learned to adapt to her condition. "I have to accept it and move forward," she says candidly. "There’s no point in questioning myself anymore." To manage her symptoms, Celine relies on a combination of non-pharmacological treatments, immune therapy, vocal exercises, and physical activity. "I have two paths ahead of me," she explains. "I can either push myself like an athlete and work tirelessly, or I can give up entirely. And giving up isn't an option for me."
Finding effective treatment for SPS hasn't been easy. Given its rarity, understanding the condition is still a work in progress. For a while, Celine relied heavily on high doses of Valium to manage her spasms. "Honestly, I didn't realize how dangerous it could be," she admits. At times, she took as much as 90 milligrams at once. A close friend, speaking exclusively to Closer, explains, "She would take more pills because they weren't working anymore. But with the guidance of her doctors, she slowly weaned herself off the medication." This journey highlights the resilience and determination Celine has shown in overcoming obstacles both physical and emotional.
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A Family That Stands Together
Despite the challenges, Celine remains optimistic and draws strength from those around her, especially her children—René-Charles, 23, and 13-year-old twins Nelson and Eddy. Her boys are her anchor, providing her with the love and support she needs during tough times. "No matter how scary an episode might look, I assure them that SPS won't take me away," Celine shares. According to a close friend, Celine is open with her children about her condition, ensuring they understand what's happening. "They see her pain, and it breaks their hearts, but she makes sure they know she's fighting," the friend explains.
Her therapist has educated her sons on recognizing emergencies and responding appropriately. "We've installed panic buttons throughout the house," Celine reveals. "Having such responsible kids makes me feel incredibly grateful. This is our reality now—we support each other through everything." Even in moments of vulnerability, Celine finds comfort knowing her family is by her side.
Celine also finds solace in memories of her late husband, René Angélil, who passed away in 2016 after battling throat cancer. "He'll always be my husband," she says with emotion. "Whenever I travel to see my doctors, I carry pictures of him with me." These small gestures remind her of the love and partnership that continues to inspire her daily fight.
Returning to the Stage
More than anything, Celine is driven by her desire to return to the stage where she belongs. Performing live has always been her passion, and she's determined to make it back, no matter the hurdles. "Even if I have to crawl, even if I have to communicate with gestures, I'll find a way," she vows. Her connection to her fans fuels her resolve, reminding her why she started this journey in the first place.
Celine feels relieved that she no longer has to hide her illness. Initially hesitant to go public, she eventually realized that transparency was necessary. "She wasn't always ready to share her story," her friend admits. "But when she understood that her condition wasn't improving, she knew she owed her fans an explanation." By opening up about her diagnosis in 2022 and allowing cameras to document her daily struggles, Celine took control of her narrative. She hopes her story will inspire others facing similar battles.
With unyielding determination, Celine faces each day with courage. "I take pride in how far I've come," she reflects. "I believe in my strength, my bravery. Every day is a challenge, but my willpower, my passion, and my dreams keep me moving forward." Her journey is far from over, but one thing is certain—Celine Dion's spirit will never be defeated.
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