As a caregiver for her sister with Parkinson’s, Steen (Christina) Starr’s journey was not just a physical task but a deeply emotional and inspirational one. Through a short film, Steen documented the highs and lows of her caregiving journey, showing the world what true love and commitment really mean.
Steen’s journey started even before her sister’s diagnosis, as she had already witnessed the process of her father’s atypical Parkinson’s diagnosis. “My mother was his primary caregiver and I saw the toll that took on her,” Steen says. “When my sister was diagnosed, myself and my other sisters rallied together to support her through this difficult time.”
Balancing caregiving with work and personal relationships was no easy task, but Steen made it work. “As the family member with the most flexibility, I took on the role of my sister’s legal guardian, even though I lived the farthest away,” Steen says. “But I made my sister’s care a priority, and with my freelance consulting work, I could attend family care conferences and keep in touch through emails and phone calls. I made sure to visit my sister at least three times a year and spent as much time with her as I could. It was probably easier for me than others with more structured work environments.”
Throughout her caregiving journey, there were many challenges, from family dynamics to navigating the healthcare system and Steen’s caregiving journey transformed her in profound ways. Despite the initial distance and differences in personality, she and her sister became closer.
“There was a twist in our relationship. We were two opposed personalities, never really close and yet I ended up as her guardian. Disease and illness introduced more variables, but I value that I could give her the care and support she needed. In the end, it felt like there was a resolution.”
While providing the care and support her sister needed, Steen also recognized the importance of finding communities and resources for people with Parkinson’s and for those caring for them. Parkinson’s remains a disease with very few treatment options and needs more attention and study.
Steen’s short documentary, “This is What the World Looks Like When You’re Gone,” is a testament to the profound impact of her caregiving journey. “In creating the film, I explore the concept of how the world carries on after the loss of a loved one,” Steen says. “The film is a deeply personal and reflective exploration of grief.”
Just completed, the film has been submitted to national and international festivals. Steen made accessibility a priority by incorporating text directly into the film rather than adding it later as captions. ” I worked closely with people who use captions to ensure that the text on the screen was always accessible. I wanted to integrate accessibility in a creative way that made the film more inclusive. An audio description track is also available for those with low to no vision.”
Looking ahead, Steen plans to continue exploring different avenues to reach audiences, including through organizations like Parkinson Canada. This film marks a departure from her previous film work and showcases Steen’s ability to create moving and poetic pieces that touch the hearts of those who watch them. To learn more about Steen’s work, visit her website at http://christinastarr.ca/film.html. And if you or someone you know is living with Parkinson’s, consider making a donation or learning more about Parkinson Canada at https://www.parkinson.ca/.