When my eldest daughter was at the University of Texas she sent me a CD that featured the singer, Celine Dion. I had never heard of the performer before that moment but I instantly fell in love with her and played the CD over and over again. From about 1990 forward I closely followed Celine’s meteoric career and found myself enjoying any song that she performed.
I had often considered traveling to Las Vegas for the sole purpose of seeing Celine in person but I somehow never got there, nor was I able to see her when she toured. Nonetheless I considered her to be one of the most incredible singers I had ever heard. She had a range and a sensitivity for delivering lyrics that was magical. I imagined that I would still have time to one day witness one of her performances. Little did I know that Celine was harboring a secret that was terrifying her.
It seems that Celine Dion was noticing troubling things about her voice and even her body, particularly after a performance. She began to experience spasms in her limbs and her voice would sometimes be uncharacteristically raspy. She took Valium to calm the skittishness of her body, often more than once during a live show. Even as she understood that drugging herself to hide the pain, she kept doing what made her fell alive. As her pain became more and more unbearable she had to begin cancelling performances using excuses like having a sinus infection or a virus of some kind. Eventually her symptoms became so severe that she had to pull the plug on singing altogether.
It seems that Celine Dion had been diagnosed with Stiff Person Syndrome or SDS, a rare autoimmune disease that affects one or two people in a million. It is a neurological disorder that cause spasms of the limbs and even of the lungs. As her illness progressed, Celine was unable to sing as she once had. She often experiences debilitating events during which she is unable to control the horrific symptoms of her disorder. These days she is mostly homebound, fighting to become strong enough to return to the occupation that she believes defines her very existence.
Recently I watched a documentary on Amazon Prime called I Am Celine Dion. It was admittedly difficult to watch because Celine did not attempt to sugar coat her experience with SPS. In fact she was quite honest about how difficult her journey has been and how much singing is part of who she has always been. She misses the excitement of the crowd and the exuberance of hitting the right notes. She has been passionate about singing since she was a child and she does not mince words about how tragic losing her gifted talent has been for her.
During the filming Celine goes into a terrifying spasm that contorts every part of her body while her blood pressure fluctuates to the point of danger. Seeing her contorted face and limbs which in those moments brought me to tears. I viscerally felt her pain. I recently experience spasms in my back that were so strong that I felt as though I was literally going to fall to the ground. In the worst moments just moving from one position to another was excruciating. I cannot imagine enduring this kind of thing in the hands, feet, limbs, back and even in the very act of breathing on a regular basis. It has to be frightening and debilitating for Celine and those who love her.
Celine Dion feels her loss in every fiber of her being. The gift of a magnificent her voice has been cruelly taken away from her. For me it would be like being unable to see so that I can read, and write and teach. We each find our talents if we are lucky and having them struck down without warning is perhaps the cruelest irony anyone might endure. For such a thing to happen to a person who is as extraordinary as Celine is a nightmare. Nonetheless she seems determined to return to performing one day even if she has to crawl back to the stage.
Celine sang a song with her new condition and quite obviously her voice has changed considerably, but she still sounded beautiful. I can imagine her changing the way she sings like Frank Sinatra eventually did as he grew older. She might sit on a stool or a chair with only a spotlight while she croons in a raspy but still stunning voice. It would be different, but I believe that her fans would cheer her on and love her as much as always. We all like stories of courage and hers is certainly one for the ages.
I’ll be thinking of Celine Dion from here on out. I’ll be cheering her hopeful progress. She deserves to be able to use the beautiful gift that is her voice. For now she has proven to once again be an inspiration with her humility and honesty about how she feels. There are surely others who are suffering who will find hope in her message. I know that she has had a deep affect on me.
In the documentary Celine Dion attempts to consider who she is. She admits that singing has always represented her very soul. Perhaps she will learn that she is doing as much for the world by revealing her difficult journey as when she sang like an angel. I certainly wish her well and I hope that her heart will go on.
All It Takes Is A Little Love 