Celine Dion hopes to bring awareness to stiff person syndrome (SPS) amid her struggles with the rare neurological disorder.
The 56-year-old admits she was unaware that the amount she was taking could have killed her but continued to use the drug as it helped relax her body from muscle stiffness and spasms.
“Ninety milligrams of Valium can kill you; you can stop breathing. And at one point, the thing is that my body got used to it at 20 and 30 and 40 [milligrams] until it went up. And I needed that; it was relaxing my whole body for what, for two weeks, for a month. Okay, 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,” she shared in the interview aired on June 11.
Ms. Dion first felt what she now knows were early symptoms of the disease in 2008 while on her “Taking Chances World Tour.” She had trouble controlling her voice and had to lower the key of the songs while performing.
“It’s like somebody is strangling you, it’s like somebody is pushing your larynx/pharynx … unfortunately, these spasms affect every aspect of my daily life … sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I’m used to,” she said.
Aside from singing, Ms. Dion elaborated on the impacted quality of life, saying she had broken ribs in the process and has had her hands and feet become immobile.
“If I cook—because I love to cook—my fingers, my hands, will get in position … it’s cramping, but it’s like in a position where you cannot unlock them,” she said.
Ms. Dion hid the disease for a long time, fearing disappointment from her family and fans. At the time, she was caring for her three children and late husband, René Angélil, who was battling cancer.
“I wanted to be brave, I didn’t want to let anyone down … I had to raise my kids, I had to hide. I had to try to be a hero. Feeling my body leaving me, holding onto my own dreams. And the lying for me ... the burden was too much,” she shared.
When the COVID-19 pandemic hit, that was Ms. Dion’s chance to slow down, curb her dependency on medication, and figure out what was happening to her body.
“It was an opportunity for me to take a break [and] not be brave. And to be smart … I stopped everything with the help of doctors. I was weaning off all the meds, and especially the bad ones. I stopped everything because it stopped working,” she recalled.
Despite her debilitating symptoms, Ms. Dion has vowed to perform again, noting that singing is what she loves and knows most.
“I’m going to go back onstage, even if I have to crawl. Even if I have to talk with my hands, I will, I am Celine Dion, because today my voice will be heard for the first time, not just because I have to, or because I need to. It’s because I want to, and I miss it.”
Stiff Person Syndrome
SPS is a progressive, rare neurological disorder that affects about one or two people out of a million and twice as many females as males.Symptoms include stiff muscles in the torso, arms, and legs, as well as greater sensitivity to noise, touch, and emotional distress, which can set off muscle spasms.
While the exact cause of SPS remains unknown, researchers believe it could result from an abnormal autoimmune response in the brain and spinal cord.
There is no cure for SPS, but symptoms can be controlled with medications such as sedatives, muscle relaxants, and steroids. Anti-body treatment, among other immunotherapies, may also be prescribed.
