Ashley Wilson shares her journey with cystic fibrosis (CF), from long hospital stays and a CF liver disease diagnosis to creating films and poetry that bring hidden truths to light. She reflects on vulnerability, representation, and the strength found in turning lived experience into art that inspires and connects others.
Transcript
My name is Ashley Wilson. I am a film producer, writer, director, and I’m also an author. I’ve been diagnosed with cystic fibrosis since birth. And since that time, I’ve used my love of filmmaking and writing books of poetry to advocate and spread awareness for cystic fibrosis.
I originally started with my YouTube channel. And the reason I started it in 2016 was because in 2015, I had the longest stay ever at the hospital for me. Cause at that time, I would have lung exacerbations and tuneups and such where I’d have to be in the hospital for about two weeks to get over whatever was in my system.
But in 2015, I was diagnosed with CF liver disease, and that was a two-month hospital stay. And at that time, there were not a lot of cystic fibrosis influencers and YouTube creators and such. So I kinda wanted to begin sharing my story to hopefully inspire other people.
But I just fell in love with filmmaking and I just wanted to create stories.
I had a lot of professors kind of encourage me to talk about my personal story. At that time, there wasn’t a lot of proper representation in screens in media and television, and so I wanted to be the change where I advocate for proper representation in media.
It was difficult to make the transition of putting a little bit of my personal story into that, but it was kind of what I needed because I also needed that switch for my YouTube channel as well because I wanted to start to discuss serious topics.
And as I was writing my first film — my first film is called “I Choose You” — there are two dancers, and the story is that hidden truths, and unspoken love, and a hidden illness is revealed in that film.
I didn’t know how to portray a lot of things with cystic fibrosis, but I knew that sometimes dance is the best way to portray emotions that can’t be spoken.
So the choreographer for that, her name is Ali Montez and she actually has cystic fibrosis. So I made sure that behind the scenes, there was someone who could instruct the dancers about her emotions of her journey of CF through dance.
It was really hard to write that, because I was a little bit vulnerable. That was the first time a lot of my classmates were even starting to hear, fully, about what cystic fibrosis was. Because I had to educate my entire cast and crew about what CF was so that they understood why this film was important.
The second film, which was based off my poetry book “Beauty Gone From Thorns,” was kind of a beautiful accident, per se. I just started writing poetry of different emotions that I didn’t know how to express. And it went over seven years’ time. But then when creating the film, it was like, how are you going to take the poetry and make it into something that people can still feel the poetry and hear the poetry but also feel the emotions as well and see it on screen.
With my next project, I’m in the midst of writing my first young adult fiction novel. And there will be cystic fibrosis involved with that. One day I would love for that to be a film as well.
Over the years, I’ve become an open book talking about CF. But with film, I had a mentor tell me, that sometimes for the story to come out, you need to bleed on the page. So still with every book that I write and every film that I create, you have to go through that aspect of bleeding on the page.
And so it’s still difficult, but then once you go through that, it’s worth it because then you create something that’s so special that is not only a reflection of how far you’ve come or whatever is going on in your journey, but also the fact that it can inspire other people as well.
There’s a lot of media out there — there’s a lot of books, art, everything, already out there — but your story hasn’t been told. And your voice is important and to just trust yourself. And sometimes to take that leap of faith is scary, but it’s important that your story is also told.
