In a touching display of vulnerability, Celine Dion has bravely shared her struggles with stiff-person syndrome (SPS) in the revealing documentary, “I Am: Celine Dion.” Directed by Irene Taylor, the film presents an intimate look into Dion’s private life and her battle with this rare autoimmune neurological disorder. According to Taylor, Dion was “teary-eyed through the whole” viewing of the film, underscoring its emotional depth and significance.
The documentary, which premiered on June 17 on Prime Video, includes a particularly striking scene where Dion experiences a severe stiffening episode. This moment highlights the physical challenges of SPS, as Dion is shown unable to move or speak, only able to communicate through squeezing a caregiver’s finger. During this episode, her sports therapist administers diazepam nasal spray and monitors her condition, opting not to call emergency services as they manage the episode in real time.
Taylor shared that witnessing such a personal and intense moment was distressing but also enlightening. “It was very upsetting. Very upsetting. I know it’s hard on some viewers, it was hard on me too. But I will tell you that Celine felt validated to see herself like that and she thought it would help her if other people could understand what [SPS] is like,” Taylor explained. This scene, in particular, remained unchanged at Dion’s request after she viewed the documentary, as she found it an accurate and validating depiction of her reality.
The director also revealed that they never discussed what would happen if Dion experienced a health issue during filming. Taylor believed it unlikely and unnecessary to plan for such an event, but Dion insisted on continuing to film regardless of her health state, stressing the importance of authenticity over privacy in that moment.
Dion’s approach to the documentary as a teaching tool for her family, especially her young twin sons, underscores her intent to use her experience to educate and connect with others, including her children. She hopes to provide them with a deeper understanding of her condition and its impacts.
Throughout the nearly year-long filming process, Taylor observed an improvement in Dion’s health, especially after receiving a definitive diagnosis. This allowed her treatment plan to be more structured and effective, leading to noticeable health improvements over time.
Taylor and Dion’s collaborative spirit is evident in the trust and commitment they shared in telling a truthful and unfiltered story. Taylor concludes, “I told her I was not only up for it, it’s what made me want to make the film.” Dion’s willingness to let her story be told without external interpretations highlights her desire to connect genuinely with her audience and share her journey with stiff-person syndrome in a way that educates and inspires empathy and understanding.