Music Monday: Celine’s “I Am” Chronicles The Courageous Battle with Stiff-Person Syndrome (SPS)
by: Debbie Waltz
As many of you may recall, I could check off one item from my bucket list: going to Paris to see the Eiffel Tower in person. Another of my bucket list items has always been to see Celine Dion in concert one day. She has an amazing voice and has overcome a lot in her personal and professional life to get where she is today. This includes growing up in the spotlight to become a top female vocalist, falling in love and marrying her manager, and her struggle with infertility and her husband’s battle with cancer. That being said, you can imagine her surprise at being diagnosed with Stiff-Person Syndrome (SPS).
According to the John Hopkins Medicine website, Stiff Person syndrome (SPS) is “a rare neurological disorder that most commonly causes muscle stiffness and painful spasms that can come and go and can worsen over time,” Named for its overall impact on the body, the disorder can cause significant changes to a person’s gait or sight. SPS affects one or two in every million and usually develops in people in their forties and fifties.
Directed by Irene Taylor, this documentary gives viewers an in-depth view of Celine’s personal struggle to stage a comeback despite her diagnosis. Between clips of her long career, Celine opens up a about when she first noticed changes to her voice. About 17 years ago, she experienced “voice spasms” which made it difficult to do her voice exercises during breakfast and execute perfect pitch. The disease got so bad last year that she developed trouble walking; as of today, she has not used her voice yet to really sing. “Music. I miss it a lot. But also, the people… I miss them…”
Upon canceling her residency in Las Vegas, she reflects on her struggle to keep the show going as her symptoms became more prominent. She felt a responsibility to her audience and those producing the concert to make it a good one. “it’s not hard to do a show, you know. It’s hard to cancel a show. If somebody sees me have a good for a moment with my family… And I was supposed to be on stage and they had a ticket that night… They have the right to come to me and say, ‘Hey.’ I can’t just do whatever I want. I can’t go out. I’m stuck”
Celine acknowledges how big a role her voice played in life before SPS.
“My voice was the conductor of my life. I was following it. ‘You lead the way. I following you.’ And I was okay with that because I was having a great time.” she says. Now she struggles to come to terms with its new role, showing a side to Celine we’ve never seen before. Throughout the documentary, she tries to sing when explaining SPS and how it affects her personally. She breaks down virtually every time as if afraid to show audiences her weaknesses. “.. I think I was very good. I think I had some stuff that was amazing. But there’s been moments where I had to go to the studio and I knew they wanted Celine Dion. Who is Celine Dion? Celine Dion is the one who sang the highest note ever and she is the best.”
Taking a tour of her clothing warehouse, she reminisces about her life on the road. Though she enjoyed entertaining audiences, she acknowledges the many people it took to make it happen. Not only did her band become like family to her, but her costume designers thought up unique ways for Celine to look classy while being free and comfortable.
“My band, my backup singers. I want them to feel good look good. Do you like yourself? When you like yourself, you walk better. You perform better. You hold your instrument with pride. We grew together. And we built, and we walked, and we fixed, and we dreamed, and we traveled together and we grew together, and we bonded together, because at the end, all we wanted is to be the best of each and every one of us”
She acknowledges she wouldn’t be where she is without them.
“I became who I am because of these people,” she says
Celine admits fame has its disadvantages- especially in raising a family in the spotlight
Though Celine is known as a powerhouse on stage, this documentary will give you a new sense of the word- learning how she dealt with her disease early on to ensure that her audiences always got her best- sometimes to the detriment of her health and well-being. Now she is learning how best to take care of herself to get back to what she loves doing the most.
The documentary is available now on Amazon Prime