EAGLE RIVER, Alaska — The brain aneurism struck Denise Creager-Smith when she was still in high school, she said.
At first, she recalled, she wasn’t expected to live. She did. She relearned how to walk and talk, completed her junior year of high school that summer, graduated on time with her class and went on to earn her master’s degree, she said.
More than three decades later in a downtown coffee shop, the Eagle River resident spotted a flyer for a special gathering — something called Unmasking Brain Injury, an art-driven community project aimed at raising awareness of and support for people living with traumatic and acquired brain injuries.
“I’ve been trying to figure out, in some ways, God’s purpose,” Creager-Smith said. “So when this came out I was like, ‘OK, maybe I’m being guided.'”
On a rainy Saturday in early July, she joined a small group of Alaskans in an Eagle River quilt shop to participate in a new kind of art project.
Unmasking Brain Injury began at Hinds’ Feet Farm, a North Carolina nonprofit serving people living with brain injuries. In the United States, more than 3 million people sustain traumatic and acquired brain injuries every year, according to estimates from the Brain Injury Association of America and the Center for Disease Control.
Project participants decorate blank masks in ways symbolizing the effect of brain injuries on their lives: The resulting masks and shared stories are displayed online and at art exhibits around the country, according to the nonprofit. So far, the project has gathered hundreds of masks and spread to 29 states, where it’s usually organized by a sponsoring group or nonprofit.
In Alaska, Annette Alfonsi organizes it all.
“Right now, there aren’t a whole lot of options in Alaska for patient advocacy,” she said. “I just saw a real need for patient involvement.”
After suffering a brain injury in a rollover car crash in 2012, Alfonsi said she found herself struggling to navigate a complicated health care system. It was a frustrating, eye-opening experience, she said. When she learned about Unmasking Brain Injury, the goals of the project and the opportunity to bring it to Alaska, the prospect of doing it solo didn’t sway her.
“I was like, ‘Watch me — if it might help, let’s do it,'” she said.
Since then, Alfonsi has worked to spread the word about the project and organize Unmasking Brain Injury events at venues around Anchorage. On July 8 at The Quilt Cache in Eagle River, she filled a back table with craft materials and waited to see who would show up. The support from local businesses means a lot, Alfonsi said.
“It matters that people care,” she said.
Living with a brain injury “can be a really isolating kind of thing,” Alfonsi said.
That’s what made the mask-making project so powerful, she said. Through painted, personalized masks, people expressed emotions ranging from anger and grief to triumph, pride, loneliness and feelings of invisibility. Unmasking Brain Injury is a way to give voice to those experiences, Alfonsi said.
“There are so many different stories,” she said.
Anchorage resident Karl Eklund arrived at the gathering wearing a t-shirt that read “I had a brain tumor; what’s your excuse?”
“I like your shirt,” Creager-Smith said.
“Thank you,” he replied, grabbing a cup of coffee and sitting down to paint. “It’s only for special occasions.”
Alfonsi said she wanted Unmasking events to be comfortable and welcoming, open to anyone whose life has been affected by brain injury in some way — patients, caretakers and family members. She said she hoped to educate people and connect them to opportunities to learn and grow.
While rain drenched the parking lot outside, the quilt shop was bright and warm. Music played over speakers in the back. For a moment, the painters worked quietly.
“We’ve got a problem,” Eklund said.
“Uh-oh,” Alfonsi said.
“The Beatles are playing,” Eklund said, smiling.
Alfonsi laughed — it was a joke, but not all musical requests were for fun. Different people’s injuries can affect them in different ways, she said, and things like music and lights can have outsized effects.
Those are some of the kinds of things Unmasked hopes to communicate, Alfonsi said: For people living with brain injuries, inner experiences can vary vastly from outer appearances.
A WAY OF SEEING
Sitting at the table at the back of the quilt shop, Craiger-Smith smoothed craft glue over her mask, painted bright green. She said before she began the project, she’d stared at the mask’s smooth paper surface and wondered how she could possibly summarize 33 years’ worth of progress and pain.
Then she started to paint.
“I went home and told my husband, ‘You know what? I’m really, really happy with how it turned out,'” Creager-Smith said. “I was amazed at how much this project actually made me think and reflect on where I’ve come.”
Her eyes suddenly filled with tears, but her voice was steady.
“It’s really a healing way of seeing what you’ve gone through,” she said.