Guest Post: Filmmaker Libby Spears On Working With MSer Lydia Emily
I first met Lydia Emily in 2013 when we were commissioned to make a short film about a survivor of sex trafficking for CHIME FOR CHANGE. Right away, I knew I wanted to celebrate the resilience of Jessica, the woman we profiled, and I could think of no better way to do this than by bringing in an artist who could paint a public mural in her honor.
By great luck I found Lydia Emily and she agreed to help us. It was over those first few weeks that she started sharing more about her life, including a recent diagnosis of multiple sclerosis.
I knew very little about MS when I first met Lydia Emily, but the more I learned, the more angry I became at the common story of missed diagnoses and gaps in the current healthcare system that many people with MS have to endure. Chronic disease is a fast growing crisis around the world and we urgently need to put more funding into cures and resources that support families. But that’s not the whole story.
While it’s important to have accurate information about MS available to everyone, it’s equally important to ensure that this information and the symptoms of the disease don’t become reductive. I’ve been overwhelmed by the spirit of connection among people in the MS community and I’ve been personally moved by the relationships I’ve seen emerge between Lydia Emily and the many who have come out to participate in events around her MS awareness murals.
Lydia Emily is unlike anyone I’ve ever met. She doesn’t just bend the rules - she breaks them and won’t let social niceties come in the way of forming real and authentic connections with people. She is truly passionate about making her time count and uses art to raise awareness about people who are too often overlooked by the mainstream media.
Beyond being an artist and activist, she is a generous friend, an incredible single parent to two daughters, including one with autism, and a community builder. She inspires me on a personal level and I wanted to share her story with the world.
I want to show that we are not limited or defined by a diagnosis.
Over the past two years of filming Lydia Emily, she’s become a personal friend and it’s understandingly difficult to see her in acute physical pain. I want to be respectful to her and her family when her symptoms are flaring up and only film when she’s comfortable with it.
That said, I’m committed to filming in ways that are unobtrusive and have developed a relationship based on trust with Lydia Emily, which makes the process easier. In terms of practical challenges, it’s always a bit trickier when you are securing permissions to shoot in doctors’ offices and hospitals. The staff wants to (rightly) ensure that they are respecting the privacy of other patients when we are filming, but it does mean we have to plan carefully and allot extra time for certain shoot dates.
The real key is to capture the whole story and to focus on the “living with” part, not just the “MS” part. Obviously multiple sclerosis is a key factor in Lydia Emily’s life and we capture this reality without shying away but like many others living with MS, she lives a full life.
We capture the lows, the flare-up symptoms and the frustrations of insurance companies because these are very real experiences in Lydia Emily’s life. But so is “Camp Kablam”, a regular gathering of the most amazing people at her home, as well as capturing Lydia Emily painting alongside her daughter.
My hope is that we are honestly capturing nuances in Lydia Emily’s life and that people will be able relate to her struggles and celebrate her triumphs because they are reflections of their own.
For millennia, human beings have made progress through storytelling. Stories are a type of transmission that is in our bones and they serve to inspire, illuminate, caution, teach and help us connect with each other in unexpected ways.
I’m drawn to stories that challenge the status quo and stretch the imagination and that, hopefully, leave viewers moved and open to acting in some way to change the world around them. My team has already made films and shared them with audiences and witnessed the electricity in the room when the credits roll.
What follows is an energy to act, to continue to move our world in a more positive and compassionate direction and that is worth everything.
You can watch the trailer below and learn more about Lydia Emily on PC594.com.