In December 2022, Celine Dion revealed she had been diagnosed with a rare neurological condition known as stiff-person syndrome.
This condition affects the spinal cord and brain, causing severe muscle stiffness and spasms, which can make it difficult to breathe and control one's movements.
Despite grappling with this debilitating illness over the past year, Dion decided to share her journey with fans through a documentary titled "I Am: Celine Dion."
Moments where the singer struggled to breathe and lost control of her body became viral topics on social media, shedding light on her challenges.
Despite these difficulties, the documentary's director, Irene Taylor, continued filming.
She expressed surprise at Dion's seizure during filming, stating, "No one expected her to have a seizure. It was never discussed. We never thought something like this could happen during filming."
Taylor remembered her resolve to keep filming despite being unable to assist Dion physically.
She recalled Dion's encouragement: 'I've been filming Celine for eight months and she never told me to stop. In fact, she said, "Do whatever you need without asking for my permission." So I did my job.'
When the documentary was nearing completion, Taylor contemplated excluding the scenes where Dion had seizures.
However, Dion insisted on including these moments to provide a more authentic portrayal of stiff-person syndrome.
Taylor remembered Dion's firm request: "'I don't want you to cut that scene,' she said. And when she referred to 'that scene,' we knew exactly what she meant."
In an interview with the Today Show, Dion described the early symptoms of her illness, likening them to feeling as if someone were choking her or putting pressure on her throat.
Through her openness about her struggle, Dion aims to raise awareness and provide insight into living with stiff-person syndrome.
Her documentary not only chronicles her personal journey but also serves as a testament to resilience in the face of profound challenges.
