The Valium addiction, the violent spasms that broke her ribs, the cramps in her throat — as if they were strangling her — as she sings: Céline Dion’s life has descended into a nightmare since he discovered he had “stiff person syndrome”, a rare (and incurable) neurological disorder which causes progressive muscle stiffness.
A music superstar — 220 million records sold worldwide, assets of 480 million dollars5 Grammys won —, Céline Dion decided to talk about her drama in an interview with NBC which anticipates the release of a documentary on Prime Video (I am: Céline Dionfrom Tuesday 25 June).
The singer, born in Canada 56 years ago, revealed that before her diagnosis she was taking diazepam (the psychotropic drug also marketed as Valium) to relax «the whole body» and be able to perform on stage: «I didn’t know, honestly, that it could kill me. I would take, for example, before a performance, 20 milligrams of Valium, and then, just walking from my dressing room to backstage, the effect was already gone.” So he started increasing the dosage «up to 90 milligrams per dayan amount that can kill you” and from which he had to detox (prescriptions for adults are typically between 2 and 10 milligrams).
The symptoms of the disease are devastating. When he takes it by the throat «it’s like someone is strangling you, as if someone was pushing your larynx. But it can also occur in the abdominal area, in the spine, in the ribs, in the hands: they are cramps, but it is as if they are in a position where you cannot unblock them. At one point I broke some ribs because the spasms, when they are very violent, can lead to a fracture… If stung, the feet get stuck. If I cook — because I love cooking — my fingers and hands freeze in that position.” There is no cure for this progressive disease (affecting 1 in a million people), but treatment can help control symptoms.
Singer – the sunken face, perhaps thinner than she already was — has been suffering from it for years, but underestimated the situation: «I didn’t know what was happening. I should have stopped, taken the time to understand it.” It coincided with the period in which her late husbandRené Angélil (the man who discovered it, who died in 2016), was battling throat cancer: «I had to hide. I had to try to be a hero». She stopped only in December 2022, when she announced the forced break from the scene after the diagnosis of the disease: «At the beginning I asked myself: why me? How did it happen? What have I done? It’s my fault? Life doesn’t give you answers.”
Having made a surprise appearance at the beginning of the year at the Grammy Awards, when she presented Taylor Swift with the award for album of the year, Céline Dion is now also the protagonist of the documentary directed by Irene Taylor, where she offers a raw look behind the scenes of the fight against the disease that changed her life. «I’m working hard every day but I have to admit it’s hard – he says with tears in my eyes in the trailer published in these hours —. I really miss live performances, I miss people.” However, she is determined to take back the stage, her live concerts: «I’ll be back. If I can no longer run I will walk, If I can’t walk anymore I’ll crawl and crawl. But I won’t stop. I will never stop.”
