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Becoming a Filmmaker with Cystic Fibrosis

By Roy Berkeley


Becoming a filmmaker has been a confusing journey that began with an abrupt entry into adulthood. The summer I graduated from high school and turned 18, I opened my laptop and Googled “cystic fibrosis.” I thought surely the internet has something worth telling me that I don’t already know about this strange disease I was born with. The odds of this were good because my parents never went into much depth about CF so as not to scare me. I only knew that I would get sick if I didn’t take my meds, do my physical therapy, and inhale antibiotics through my nebulizer. That summer, I became more curious about CF because my worst symptom had become dire and the doctor’s explanation was vague. The symptom was violent, hours-long episodes of coughing up cup-size helpings of blood, leaving me physically and emotionally drained. The moment I clicked the first website that read “cystic fibrosis” is a moment etched in my brain like a scar. I remember it was mustard yellow and told me that the average person with cystic fibrosis lives to be 30 years old. The ground fell out from under me. All the pieces of my life that never made sense suddenly fit into place. I felt so stupid for not having understood the severity of it. So incredibly stupid. Everything I’d been told about what I could expect out of life was a lie. The truth had been right in front of me, every moment of my life, and I was too naïve to grasp it. Not exactly a surprise, I was the kid that believed in Santa Claus into my teens.

That same revelatory summer, my best friend left home, leaving me alone in the world with the knowledge that I’m some kind of monster. Spending my early college days alone, coughing up blood, the way I coped and escaped was by writing a screenplay. My passion project was a biopic about a cult actress I idolized as a teen, who had been pigeonholed into the B-movie subgenre. In a moment of clarity, she’d realized the gravity of where she was stuck and felt an existential panic that led her to leave her skyrocketing fanbase behind. I took her story as an example of how to journey out past the boundaries of one’s world. In that same spirit, I applied to a film school just outside my state border. I decided that my purpose in life was to become a filmmaker so I could pay tribute to her story. I felt she had saved my life by giving me a purpose in it. In the wee hours of the night, I would write longhand in a notepad, often crying my eyes out from a cornucopia of emotions.

After finishing my script, I put it away and got accepted into film school. I fell in with a group of passionate, young filmmakers who showed me the ropes and believed in me. I finally had a place in the world where I belonged. All the while, my health was going through extremes that I mostly kept hidden. I would sometimes make excuses to leave film shoots because an episode of hemoptysis would begin. I’d shove some pills in my mouth to help my blood clot, while holding up in a bathroom stall, emptying my lungs into a toilet. Being confronted by the fragility of life day in and day out ended up shaping my voice and the stories I wished to tell. I gained confidence while living an increasingly traumatic life. As a result, my storytelling interests broadened to tell more than just one actor’s story.

After graduating with a bachelor’s degree, I was accepted as a grad student into the

USC School of Cinematic Arts and moved to Los Angeles to begin a new era of my bizarre life. As I’ve worked toward my MFA, my health has been managed by the same team of doctors that managed Anton Yelchin’s private care – an actor and fellow CF patient. They’ve closely monitored me, in and out of the hospital, allowing a future to actually take shape on the horizon. If I could just stay alive and not miss too many classes from being ill, I might actually become who I never realistically imagined I’d be. I owed it to that kid in his parents’ basement, feeling like a monster. I know it sounds dramatic, but having CF often feels like the uncool version of being a vampire; a short life and lots of O-negative goin’ out. My hero, Claire Wineland, had the same observation.

I’ve now made it past the median age, and I try to live every day as if it’s my last. Not being able to breathe in the back of an ambulance is a life-changing experience. The ones you love flash before your eyes. I’ve been made to feel wholly grateful like this several times and my only wish is that we could all feel like this all the time. Through my chosen career, I hope I can help people accept each other as they are. In filmmaking, I’ve chosen to explore the subjective experience of trauma. The ultimate goal is to destigmatize everything. The human experience is hard enough without being relegated to the shadows. I love life and all its horror.

About the Author: Roy Carlos Berkeley is an LA-based filmmaker, born and raised in the border town of El Paso, Texas. His older sibling also has Cystic Fibrosis. Roy became a film student in 2010 and began forming his professional identity. In 2018, he moved to Los Angeles to attend the University of Southern California’s graduate film production program. His short films have won festival awards including Best Director at the Genre Celebration Festival in 2017. Most recently, his Cystic Fibrosis-themed film “Human Resources” screened at the Houston Horror Film Festival. Check out his work at vimeo.com/royberkeley and follow him on Instagram: @royberkeley.

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*The CF Roundtable does not give medical advice. Any medical opinions represented in these articles are those of the writer and do not represent the views of USACFA, any of our community partners, or any other group or individual. We strongly suggest you consult your doctors regarding any medical references and before altering your medical regimen in any way. USACFA does not endorse any products or procedures. 

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© United States Adult Cystic Fibrosis Association 2019

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