Céline Dion, the legendary singer known for her powerhouse vocals and iconic hits like "My Heart Will Go On," has opened up about her ongoing battle with Stiff Person Syndrome (SPS). This rare and debilitating neurological disorder has profoundly affected her life and career, and Dion has candidly shared her experiences with treatments and the challenges she has faced.
A Desperate Search for Relief
Dion's struggle with SPS has been marked by extreme muscle spasms and chronic pain, conditions that have pushed her to seek various remedies in a bid to maintain her performance schedule. Among these treatments was the use of high doses of prescription medications such as Valium. This medication, often used to manage muscle spasms, became a temporary solution for Dion. She revealed that she had to incrementally increase her dosage to achieve any relief, eventually reaching up to 90 milligrams—a potentially lethal amount.
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"Ninety milligrams of Valium can kill you," Dion disclosed in a heartfelt conversation with Hoda Kotb during NBC News' special, *Celine's Story*. She explained how her body gradually built up a tolerance to the drug, necessitating higher doses that provided diminishing returns. "It was relaxing my whole body, but for what? For two weeks, for a month—'OK, the show must go on. Here we go, I'm fine'. But you get used to it, it doesn't work anymore. More, more, more."
The Ineffectiveness of Medication
Despite initially providing some relief, the medication eventually became ineffective. Dion described a moment where she took 20 milligrams of Valium, only to find that by the time she walked from her dressing room to the stage, the effects had already worn off. The temporary respite was not enough to sustain her through the rigorous demands of live performances.
When the Covid-19 pandemic brought live events to a standstill, Dion used the hiatus to focus on her health. However, this period also underscored the limits of her medication regimen. "I stopped everything because it stopped working so I got worse," she admitted, highlighting the severe toll that both the condition and its treatment had taken on her.
A Long-Awaited Diagnosis
Dion's battle with muscle spasms and pain spanned over two decades before she finally received a diagnosis in 2022. The revelation of Stiff Person Syndrome provided some answers but also brought new challenges. For Dion, who has always been dedicated to her craft, the inability to perform was a significant blow. "I wanted to be brave," she reflected. "I didn't want to let anyone down."
Finding Strength Amidst Struggle
Despite the physical and emotional toll of SPS, Dion has remained resilient. She has continued to perform whenever possible, driven by her passion for music and her commitment to her fans. The support from her family, friends, and fans has been a crucial source of strength. Dion, who is a mother to René-Charles, 23, and twins Nelson and Eddy, 13, has found solace in their unwavering support.
"Life doesn't give you any answers," she told Vogue France in April. "You just have to live it! I have this illness for some unknown reason." Dion's perspective on her illness reflects her broader outlook on life—one of acceptance and perseverance despite the uncertainties.
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Gratitude and Hope
Dion acknowledges the advantages she has in her battle with SPS, including access to top-tier medical care and a robust support system. She is acutely aware that many others with the same condition may not have similar resources. "People who suffer from SPS may not be lucky enough or have the means to have good doctors and good treatments," she noted. "I have those means, and this is a gift."
Her resilience is also fueled by inner strength and an unwavering determination to continue her life and career despite the obstacles. "What's more, I have this strength within me. I know that nothing is going to stop me," she declared, embodying the spirit that has made her an enduring icon in the music industry.
Bottomline
Céline Dion's journey with Stiff Person Syndrome is a testament to her enduring spirit and her ability to find hope and strength even in the most challenging circumstances. Her story continues to inspire millions, proving that even in the face of adversity, the human spirit can prevail.