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 loving 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 in the world. 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 shows in person. Little did I know that Celine was harboring a secret that was terrifying her and would stun those of us who are her fans. 

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. She admits now that it was a dangerous tactic that might have killed her if she had continued. Eventually she would begin cancelling performances instead, using excuses like having a sinus infection or a virus of some kind. Before long her symptoms became so severe that she had to pull the plug on touring at all and she announced that she was resting for a time. 

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 causes spasms of the limbs and even of the lungs. As her illness progressed, Celine was unable to sing as wonderfully as she once had. Her octaves were set in the high range with little power to propel them. She began to experience dangerous episodes in which she lost control of her body. She had to seek treatments and spend her days in physical therapy sessions. For now she is mostly homebound, fighting with all of her will to become strong enough to return to the occupation that she feels defines her. 

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 lost she now feels because the singing that represents her very being is no longer possible. 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 this turn of events has been for her. 

During the filming Celine goes into a frightening total body spasm. Seeing her contorted face and limbs which she cannot control 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. It has to be terrifying and debilitating. 

Celine Dion feels her loss. The gift of a magnificent 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 is perhaps the cruelest irony anyone might endure. For such a thing to happen to a person who is extraordinary is a nightmare. Nonetheless Celine Dion seems determined to return to performing one day even if she has to crawl back to the stage. 

During the documentary 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 doing 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 effect on me. 

In the documentary Celine Dion attempts to consider who she is. She admits that singing has always defined her very existence. I hope 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 truly believe that through this beautiful documentary her heart will go on.