ONCE UPON A GENE - EPISODE 173 - Honoring a Husband’s Legacy by Finishing His Work on a Documentary About Rare Disease Acute Flaccid Myelitis and Her Own Grief Along the Way with Sarah Potter
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Sarah Potter's husband Scott got sick and passed away while he was in the middle of creating a documentary about a rare disease called Acute Flaccid Myelitis and the families affected by it. Sarah has immersed herself into film making to finish Scott's documentary, all while working through her grief. The film is called When The Lotus Blooms and it will be released in Fall 2023.
EPISODE HIGHLIGHTS
Can you tell us about your rare disease and grief journey?
My husband was working on a film about a rare disease called Acute Flaccid Myelitis (AFM), sharing the stories of affected families not having answers about the cause or treatment. We experienced something similar when my husband had a medical event and was hospitalized for several months before we lost him in July 2020. Because he was so passionate, I knew the story had to continue to be told. It's been a wonderful way for me to honor his legacy and do the good in the rare disease community that he set out to do.
What is your husband's connection to the AFM community?
He was active in our local live storytelling community where there were monthly storytelling events and that's where he met a professor with an expertise in epidemiology. When she learned my husband was a filmmaker, she approached him with a story of a mom in her network who had a little boy with AFM and she asked for his thoughts on how to create a film to make an impact and create change around the disease. He was hooked and worked for the better part of a year to gain funding and do research before the filming began.
How does your grief align with families in the rare disease community?
There are a lot of parallels and I have the ability to connect with them, understanding what it's like to be going along with your day-to-day and suddenly something changes in a split second that your world is different.
What advice do you have for families who want to make a film?
If you have a desire to tell your story, think about your takeaway, audience, how you want them to feel and what you want them to do. Everyone in the rare disease community has two elements of a wonderful story-- something unique and something inspiring. If you have an engaged patient advocacy community, I would recommend crowdfunding to fund the film production.
LINKS & RESOURCES MENTIONED
How to Carry What Can't Be Fixed: A Journal for Grief
It's OK That You're Not OK: Meeting Grief and Loss in a Culture That Doesn't Understand
After the Shock: Getting You Back On the Road to Resilience When Crisis Hits You Head On
The Rare Disease Film Festival
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