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A confession documentary, broadcast on Prime Video from June 25, shows the daily life of the singer suffering from severe neurological disorders.
“If I can’t run, I’ll walk, if I can’t walk, I’ll crawl, but I’ll never stop.” Determined: this is how the famous Quebec singer wants to appear in the documentary dedicated to her. Titled, I am: Celine Diondirected by Irène Taylor and broadcast from June 25 on the Amazon Prime Video platform, the film plunged, for several months, into the heart of his intimacy, in 2022. The star with more than 200 million records sold in the world according to the American magazine Billboard, unabashedly delivers his fight against a very rare autoimmune disease: stiff person syndrome (SPR). A pathology diagnosed at the end of 2022 in the interpreter of For you to love me againand which causes, at the height of his crises, the rigidity of his muscles, starting with the trunk, the abdomen, then the whole body.
Suffering which forced her to cancel her residency shows in Las Vegas in 2020, as well as her international tour planned for 2023. The illness made her performances on stage impossible, severely diminishing, among other things, her vocal abilities. If doctors were able to diagnose the singer’s problems two years ago, her body has been subject to acute pain for several years, as she explains in the documentary.
“17 years ago, I started having spasms in my vocal cords. One morning, I got up after breakfast, my voice was higher and it freaked me out. (… ) I did not know what to do”, confides the 56-year-old artist, with tears in his eyes. For years, she claims to have ingested anti-inflammatories in high doses in order to calm her suffering. At the time, she did not know the causes of her illness. But over time, the attacks become more and more acute. “I got to the point where I couldn’t walk anymore, I was losing my balance”, confides Céline Dion in the documentary. She does everything to “don’t let anything show” and finds herself obliged to to hide the truth. In concert, she invents subterfuges: she turns the microphone towards the audience so as not to have to sing, or taps on it, feigning a technical problem, mentions sinus problems…
If she waited so long before being sure of her state of health, this can be explained by the difficulty of diagnosing this illness. “This takes on average five years, because it is invisible on all additional examinations, confirms to franceinfo Doctor Dimitri Psimaras, neuro-oncologist at Pitié-Salpêtrière in Paris and specialist in autoimmune diseases. If we do a brain MRI or a classic electromyogram [un examen qui analyse le fonctionnement électrique des nerfs et des muscles] to study the nervous system, the results will be normal. On the other hand, the symptoms can seem like fairly mundane things like thesevere back pain, cramps or a herniated disc when it affects only one member. Patients will then just go see their GP.”
To detect this rare disease, which affects one person in a million, according to Orphanet, an information portal dependent on Inserm dedicated to rare diseases, “you have to know what you are looking for”, explains Dimitri Psimaras. The doctor specifies that an important psychological component must also be taken into account: “There is often anxiety and depression which means that these patients can easily be mistaken for people who are malingering, then characterized psychogenic. All these reasons explain why there is a lot of wandering [avant le] diagnosis for these patients.”
In one of the strong scenes of the documentary, the star is gripped by a crisis for around forty minutes during an appointment with her physiotherapist which is entirely filmed. Celine Dion suddenly had muscle spasms. His body stiffens, his hands twist, his legs tense excessively. Impossible for her to control the slightest movement. The patrician lays her on her side and then reveals the singer’s face, frozen in a grin of pain, with a blank look. She moaned helplessly, revealing a torrent of tears. The doctor ended up administering a nasal spray to slow his heart rate and calm the attack.
This pathology, which often begins around forty and which affects women more, according to Dimitri Psimaras, is also difficult to treat despite numerous experimental therapies. “It is an autoimmune disease and inflammatory, says the doctor. Treatment is initially symptomatic and is based on benzodiazepines qwhich act on contractures. It’s necessary always combine an immunomodulatory or immunosuppressive treatment from the start of the disease. There are well-known standard treatments, Otherwise more experimental approaches such as treatments against the cancer like immunotherapy (CART) or autograft, lCanadian doctors are also at the forefront in this field for these autoimmune conditions. VSThis is often a long-term treatment, but the recurrences are possible.” Nothing, however, that could undermine Celine Dion’s determination. The singer is working hard to return to the stage as soon as possible.
The documentary I am: Celine Diondirected by Irène Taylor, is broadcast from June 25 on the Amazon Prime Video platform.