Victoria Suan went from watching Disney movies as a kid growing up in Sacramento to running a video production company straight out of Sacramento State to making an independent feature-length documentary at the age of 26.
“Becoming Incurable,” which premiers Friday at the Guild Theater, spotlights the lives of three people with chronic incurable diseases: Charis Hill, 32, Leo (Junie) Suan, 43, who is Suan’s cousin, and Sofia Webster, 25.
Suan has the bright, self-effacing laugh of someone more accustomed to being behind the camera than in front of it, but her gaze is steady. She’s spent the last two years single-handedly filming the daily lives of her subjects, then editing those 40 hours of footage down to 87 minutes.
Suan said she was making wedding videos when she came across “Unrest,” an autobiographical documentary by Jennifer Brea in which Brea documented her experience with myalgic encephalomyelitis, more widely known as chronic fatigue syndrome.
She was struck by the desire to return to documentary filmmaking, the form of her college years. Unrest reminded her of her cousin Leo, who has severe dystonia, a neurological muscle disorder that resembles Parkinson’s.
She called Leo and asked to meet, and reconnected with a high school acquaintance, Webster, who has Lyme’s disease. Then a friend connected her to Hill.
Hill is a seasoned disability advocate with Ankylosing Spondylitis who has been featured in national news, delivered a TedTalk and testified to the California Senate Health Committee. She is careful and composed, pronouncing the full weight of each word, and is tired of making her story fit any given bill. Over a recent lunch at Coconut on T, Hill and Suan discussed their collaborative relationship.
“I was crafting all of my stories so they would impact legislation. During all this, I was wishing for a documentary,” Hill said. Victoria Suan burst into laughter. “I really was!”
Unlike most policy-makers and filmmakers, Suan didn’t have an agenda, Hill said: her open-ended gaze made her “a conduit for telling stories.”
“I was there to learn,” Suan said.
“She slowly let me break into what I was actually feeling inside, not just this monotone representation that I thought the public might need to hear,” Hill agreed. In fact, she was glad to be vulnerable to Suan after years of putting forward an unflappable public persona. “Finally!” she said.
Though chronic diseases like cancer and diabetes are entrenched in the public consciousness, diseases like Ankylosing Spondylitis, severe dystonia and Lyme’s disease aren’t widely known or understood by either medical professionals or laypeople.
Hill calls herself a “professional patient”: disability is a full-time job involving research, self-management, self-care and advocacy for which she receives no payment. She relies on Medi-Cal and Social Security disability income to survive.
“This is my life,” she writes on her blog. “A job I didn’t ask for, can never quit, and will never get paid for. A job I do on top of surviving poverty, paying bills, navigating the public assistance programs I don’t want to rely on while watching from the sidelines as others achieve dreams they have the health to pursue without barrier.”
For 10 months, Suan documented her subjects’ public advocacy and private struggles for care. She watched expenses and medications multiply to combat the toll – physical, mental, and emotional – of chronic illness. Both Suan and Hill spoke of the “medical industrial-complex,” the network of pharmaceutical and insurance companies that profit from providing treatments for pain rather than cures for illnesses. “It’s not just a center of support – it’s also an industry run by the profit motive,” Suan said.
“Sacramento, I wish I didn’t have to be up here telling you how important healthcare is to my survival,” Hill said in the film. “The most important thing I should be doing is taking care of my health, not fighting for the right to healthcare.”
Chronic disease is on the rise in the states, where six in 10 adults have at least one chronic disease and four in 10 have two or more, according to the Center for Disease Control. The documentary is one step in a long battle to combat institutional and public ignorance.
“That’s the thing with invisible chronic illnesses,” Suan said. “You can see a person on a good day and they look normal.” But there is enormous and constant work going on behind the scenes – work that the documentary renders visible. “You can’t be disabled sometimes.”
“I want people who are able-bodied to listen to these conversations,” Suan said.
If you go
“Becoming Incurable” premiere
When: 7 p.m. June 14
Where: the Guild Theater.
Cost: Tickets are $10 and are available on Eventbrite.
The trailer is at becomingincurable.com.