Butterfly Girl: SXSW Review
South By Southwest Film Festival, Documentary Spotlight
A Texas teen maintains high spirits in the face of a rare, painful disease.
AUSTIN – A teenager refuses to let her life-threatening illness get in the way of a good time in Butterfly Girl, Cary Bell's touching tag-along with Austinite Abigail Evans. Despite the obvious sadness at its heart, the doc benefits from an unforced optimism; it will play well at fests and resonate with families affected not just by this particular disease but any ailment making similar demands.
Quick-witted and pretty, Abbie is an 18 year-old who since birth has endured a skin condition that makes her enormously sensitive to pain. Slight friction can wound her and cause terrible blisters. When she was born, the nurse wiping her down unwittingly rubbed all the skin off her leg; parents John and Stacie Evans were told she'd likely die within weeks. She lived, but the condition caused her fingers to web together into barely-useful hands, and most of her body is usually covered in sores.
"It's brutal," Abbie admits, "but it's all about your positive attitude and whatnot." Though she had to be homeschooled, she finds ways to interact with the world by touring with her father's honky-tonk band -- selling T-shirts and CDs to fans at the merchandise table and befriending the doormen in clubs like Austin's Hole in the Wall, where John Evans appears to be a regular.
She's matter-of-fact with strangers who ask questions about her condition, but Bell spends enough time with Abbie at home to catch her in less chipper moments: she tearfully dreads the process of changing the feeding tube that stays plugged into her stomach; she waffles when deciding whether to undertake a surgery that would make her fingers useful but would be enormously painful and require a six-month recovery. She's resilient, though, frequently rebounding by taking pleasure in simple chores like unpackaging a fresh supply of bandages. "I'm a badass," she jokingly brags.
The film hones in on Abigail's decision to go to college and have a life away from her caregiving parents. (John and Stacie are now divorced, though we're left guessing about whether the stress of Abbie's condition triggered the split.) Bell observes the girl's first independent outing in a fun, optimistic sequence, but stops following her abruptly, leaving us to wonder how things went in the long stretch between this trip and the coda that ends the film. Though it may be a simple matter of the production having run out of money, this omission of what was certainly a dramatic period inevitably raises questions about how Abigail fared -- and the worry that Bell may have, out of understandable affection for her subject, shielded us from scenes that might have diminished our astonishment at her courage and good humor.
Production Company: Lytta Productions
Director: Cary Bell
Producers: Cary Bell, Jessica Miller, Suz Grossman
Executive producer: Jenna Jackson
Directors of photography: Matt Godwin, Cary Bell
Music: John Evans, Emily Bell
Editor: Jessica Miller
No rating, 77 minutes