I had no idea when we started this film project that it would become my story. That was not my interest, not even a glimmer on my shaky horizon. I wanted to speak as part of the collective — a small piece of the SCI community looking for answers and relaying them however I could.
I wanted to know where we are on our arduous quest for a cure. And I got some answers. But quite honestly, I was faced with the difficult reality that I most likely have to live in this body for much longer than I thought I would have to. It’s already been almost nine years.
When this first happened, I couldn’t have fathomed that. And for some that live with SCI, that may be a fraction of what they have endured. I’m only a nine year-old on this journey, well 8 and 3/4 really. A third-grader on this long dirt road of not only adapting to an SCI, but discovering who I am as a person with a disability.
When we actually hit the road to begin filming, I was like a kindergartner — only 5 years in.Think about that.
There were so many things I was still discovering, so many strands of this existence still detangling from the knot of morphing into a new kind of human. The unraveling and re-weaving of my strength, perspective and understanding continue...always.
But I braved this new SCI Research world almost 5 years ago (along with the world of filmmaking), in all my fresh-faced — albeit frustrated and exhausted — quad body, and hit the road.
We met with so many doctors, researchers, PT’s, neuro students, people with SCI (including their friends and families) — around 80 people in total on this project. Yes, 80.
I was left with a few big takeaways:
- Technology is kicking butt — namely electronic stimulation — and we are getting more opportunities, as people with SCI, to dip our toes into that pool.
- While there are some incredible and exciting things happening with pharma, gene and cell therapies worldwide, nothing seems to be quite tangible for us in those realms...yet. And I don’t know when that will be, but I’m hopeful. Somehow I’m still hopeful.
- It sounds like a tailor-made cocktail of these first two things is going to be key for any of us.
- We (those of us with SCI) hold more power, value and importance in terms of moving the dial forward than we realize or oftentimes put into practice.
- AND, we’re moving forward more quickly and more united than ever. I’m so grateful for this community. And I believe in us, in a multitude of ways.
So I’m still searching. I’m still learning. I’m still trying to find balance in this life of hope amidst the journey of BECOMING DISABLED and wholly loving myself in this body.
It’s a daily challenge.
Somewhere in this filmmaking process, we unexpectedly found ourselves confronted with THAT story. My story. My new dance with hope and acceptance.
And maybe it’s your story too.
I wanted to show the world my/our experience. To speak to you and to them. To show everyone the good, the bad and the ugly. To battle the status quo. To move the dial. To show the many ways we deal with grief, adapting, all of it. To show how challenging living with a disability can be and the dualities of living. To show the importance and complexities of doing the work to truly love oneself. To show my journey back to myself. To show the light and dark side of hope, how we all struggle with it and yet how it lives within us all at varying degrees of comfort or logic.
Leaving the story I started telling, and following the one I feel I’m supposed to tell has been a tough reality to face, and a difficult reality to trust. There’s a part of me that feels like I’m betraying some agreement, or plan. That I’m letting you all down somehow.
There have been many battles fought and lessons learned. I’ve been humbled by this process and surrendered (oftentimes not unscathed) to its rules. But I have to have faith that it’s THAT journey and everyone I met, everything I learned, everyone that helped make this happen, that led me to this place — a place that feels more vulnerable, powerful and honest.
I feel that sharing this truth is where I can be of highest service, and that feels good, scary and exciting all at the same time.
This is an unexpected place, an unexpected film. This is...
P.S. - We submitted to a few festivals just last week, which will remain nameless for now ;-) And we look forward to sharing our broadcast date for the 2022 PBS Calendar, stay tuned...