By Marielle Argueza

Video editing was something that came easily to Ashley Wilson when she took a high school class in 2015. 

“I was pretty good at it,” Wilson said, “but I didn’t know it was going to turn into anything.” 

Her newly acquired expertise opened a lot of doors for her. She started a YouTube channel, Ashley’s Roses, and eventually earned a bachelor’s degree in cinematic arts and technology from CSU Monterey Bay, graduating in May. Being behind and in front of the camera also gave Wilson a platform and outlet to talk about her genetic disease, cystic fibrosis. The disease figures prominently in her capstone project film, “I Choose You.”

She credits her critique of “Five Feet Apart,” a 2019 love story of two people living with cystic fibrosis, with launching her YouTube career. 

It was less of a critique and more of a praise of both the book and movie versions of the work. In Wilson’s experience, the media often get depictions of medical scenarios wrong. She would know.

“I loved shows like ‘Grey’s Anatomy’ and ‘Anatomy,’” she said. “But of course, that’s drama.”

In real life, people with cystic fibrosis have to manage their pills, find ways to dislodge extra phlegm from their organs, or keep an eye on insulin if they have diabetes related to their diagnosis. “Five Feet Apart” did not shy away from these small details, as well as the big themes, like being cooped up in hospitals.  

Wilson wasn’t planning to make the disease an element in her capstone project.  

“At first, I wrote it without [mentioning cystic fibrosis],” she said. “But then it became my version of ‘Five Feet Apart,’” she said. 

The initial version wasn’t evoking the emotions she was looking for. She decided to make the change after talking to one of her mentors, Brent Hoff. 

“He told me I needed to put my personal story into it more,” she said. “Then I could really get to the emotions that I was trying to show. And for me, that meant putting cystic fibrosis into a short film,” she continued.

“I wanted to take the audience on a roller coaster of emotions but leave a lasting message of the importance of learning to choose yourself instead of sacrificing yourself for what the world expects you to be.”

She achieved this by writing the lead character, Leslie, as a dancer with cystic fibrosis who reunites with her dance partner, Thomas. The main tension comes from Leslie trying to hide her disease from Thomas. The music and choreography for the film were created by two of her friends who have cystic fibrosis. 

Wilson, who was born in Colorado, was diagnosed with cystic fibrosis at birth. The progressive genetic disease causes excessive production of mucus in the body. This can cause frequent infections of the sinuses and lungs, as well as other complications. It’s also fatal. People with the illness typically live from 30 to 50 years. While there is no cure, it can be managed by medical interventions and other lifestyle habits.

“I was lucky. Colorado was one of the first states to screen for it at birth,” Wilson said. “States like California only recently started to screen for it.” 

She said many people find out they have the disease at a much later age, causing many quality-of-life issues. Some may go most of their lives believing that they have severe allergies or other respiratory illnesses, not getting the medication they need. 

Getting a diagnosis, accessing medication, and other necessary therapies are just a scratch on the surface of what living with cystic fibrosis is like. Trying to find community and closeness can be complicated. Because even a mild illness can cause serious problems, two or more people with cystic fibrosis shouldn’t be in the same room. 

“My life could really be sad and depressing,” Wilson said. “It can be dark living with this illness.” 

But instead of sinking into despair, Wilson is insistent upon discussing all aspects of the disease. She regularly advocates for people living with the disease and critiques media depictions of people living with cystic fibrosis on her YouTube channel.

Now as an alumna, Wilson continues to build communities through people and resources on and around campus. Much of her success is attributed to finding the right medical treatment, thanks to the help of a local nonprofit, Living Breath Foundation, which she became a part of in 2007. There, she befriended Melissa Pappageorgas, a local woman who also had cystic fibrosis. 

“We were very close, like sisters, and shared everything with each other,” she said. “She was always the first person I would text or call when anything would happen.  She would come to see me perform in plays and would drop off ‘survival bags’ whenever I was hospitalized. The most important thing she ever told me was to go for my dreams and not let other people's opinions stop me. If she hadn't told me that, I don't think I would be following my passion for filmmaking.” 

Pappageorgas died from cystic fibrosis in 2018. Wilson’s capstone project is dedicated to her.

Wilson’s ability to bridge her academic work and personal challenges has made a strong impression on the people around her. Chris Carpenter, a lecturer with the university’s Cinematic Arts and Technology Department, met her when she was just a teenager and was impressed with Wilson’s mental fortitude during her time at CSUMB. 

Her first year as a transfer student was entirely remote due to the pandemic. Still, Carpenter saw Wilson navigate a socially isolated year and remain an encouraging voice to underclassmen. 

“Ashley is passionate about her work and brings a unique mental toughness that most haven't experienced,” Carpenter said. “She either exceeds or beats expectations because that is her goal in life dealing with cystic fibrosis.”

Wilson’s momentum hasn’t stopped since graduating. She is currently working on launching her own production and social media consultation company, A. Rose Media Co., and freelancing for small businesses in the meantime. 

“I wouldn’t be where I am today without cystic fibrosis,” she said. “As much as I don’t want to be the poster child for it all, sometimes in situations like this, you kind of have to be. It will always be a part of me, but it won’t define me.”