A documentary that portrays the Canadian singer Céline Dion’s fight against rigid person syndrome It premiered this Tuesday on a streaming platform, to show what this diagnosis meant for the life of the artist, who among other things had to cancel her professional commitments.
The first images of the production, titled “I am Celine Dion” and available on Amazon Prime Video, are already causing people to talk. The singer was diagnosed at the end of 2022 with this rare neurological disorder that affects “one person in a million.”
However, what few knew is that Celine has been silently facing this degenerative disease for 17 years, hiding her symptoms while performing on stage. This revelation is one of the highlights of the documentary, which promises to show the most intimate side of this international music star, offering a deep insight into her life and personal struggle.
Céline Dion’s fight against her illness
“I have been dealing with health problems for a long time and it has been very difficult for me to face these challenges and talk about everything I have been going through,” the artist confessed regarding her delicate health situation.
The Canadian singer stressed that she is accompanied by a team of professionals, who in addition to supporting her aim to ensure that the disease does not progress as quickly as it could, although its progression is inevitable. “I have a great team of doctors working by my side to help me get better and my beautiful children, who support and help me”he expressed.
According to information from the Information Center for Genetic and Rare Diseases (GARD, for its acronym in English) Stiff person syndrome is characterized “by episodes of stiffness and muscle spasms of the muscles of the trunk and arms and legs.”which is often caused by increased sensitivity to noise, touch, and as a startle response.”
Most of the time the symptoms begin between the ages of 30 and 60, and in the case of the singer, this diagnosis prevents him from “using his vocal cords.” “Not much is known yet about this rare disease, but we now know that it is the cause of the muscle spasms I suffer from,” he said of his condition.
The documentary
Director Irene Taylor, recognized for her work on “Moonlight Sonata: Deafness in Three Movements,” in which she dealt with intimate and family issues such as her son’s and his father’s deafness, decided to approach this project by focusing on the person in front of her and what I was living in.
The documentary uses performance clips and interviews from Dion’s 40-year career. It traces key moments in her biography, from her childhood in Quebec, where she was the youngest of 14 children, to her evolution from French teen star to international icon with power ballads such as “Because You Loved Me” and “My Heart Will Go On.”
One of the shocking moments of the documentary occurs when Céline Dion shows that she cannot sing, because her vocal cords are affected by the disease. “I’m working hard every day, but I have to admit it’s been a struggle. I miss it a lot. I miss the people. If I can’t run, I’ll walk. If I can’t walk, I’ll crawl. I’m not going to stop.” , sentence in this fragment of his story.
In another video you can also see the singer of the Titanic theme suffering a prolonged spasm during a medical consultation. That sequence is part of a 10-minute scene in which the artist is seen experiencing the pain of the disease.
When Taylor faced the ethical dilemma of whether to record or help, it was Dion herself who encouraged her to do the former. In conversation with AP, Taylor revealed that the singer was the one who told her not to ask permission to record and demanded that she leave the entire scene as she had captured it in the final cut.
