NOT ALONE, AFTER ALL

‘UNMASKING’ PROJECT HELPS PEOPLE WITH BRAIN INJURIES SHARE EXPERIENCES IN COMMON

By John Lundy

On the forehead I put the statement, “But you look OK.” ... Because it just makes you feel crazy, like, “Is it me? Am I just crazy? Why can’t I override whatever’s happening in my brain?”

My particular mask is unequally divided into two sides. ... I literally feel sensory-wise like I have two halves of a body that don’t feel the same.

I had one side that was a bright, happy side. ... The other side was a darker side with tears. I had an out of order sign put on me, so people would understand that I’m still not the same person.

PHOTO COURTESY ESSENTIA HEALTH-POLINSKY MEDICAL REHABILITATION CENTER

Samantha Smingler, Mark Zmudy and Sharon Jugasek were describing what they did when presented with plain white masks and various materials this winter at the Essentia Health-Polinsky Medical Rehabilitation Center.

An educator for a nonprofit, a schoolteacher and a retired accountant, the three followed paths that might not have crossed had it not been for a bad experience in common. All of them, along with 10 other people who participated in the event, have been affected by traumatic brain injury.

They are among more than a thousand Minnesotans who have created masks in the past couple of years to depict their brain injury journeys.

Turning masks into individual artistic statements might sound like a middle school summer camp project, but participants and leaders say it has proven to be a powerful experience.

“We put people in a room to make masks together,” said Brad Donaldson, chief operating officer of the Minnesota Brain Injury Alliance, the nonprofit that spearheaded the project.

“They all the sudden realize, ‘I’m not alone and the person across from me — because of me — is not alone.’”

Widespread Condition

The story began with a National Geographic special involving 16 veterans who made masks depicting their war experiences. That was picked up by an adult day care program in

North Carolina. The Minnesota group decided to go bigger, Donaldson said.

“We traveled the entire length of Minnesota, top to bottom, so that this would have a good representation of brain injury, both adults, pediatric, loved ones, caregivers, parents, professionals, people from far northern Minnesota, people from far southern Minnesota.”

Sadly, there’s no lack of prospects. Brain injury affects 100,000 people in Minnesota, Donaldson said. That’s more than the number of people suffering from HIV/AIDS, breast cancer and multiple sclerosis combined.

Caused by anything from a stroke to a car crash to a fall on the ice, brain injury is often a hidden condition with no outward signs, he said. So people affected by brain injury often are misunderstood and may not even understand themselves.

“They’ll sometimes come to see us a year later and they’re like, ‘I thought I was going crazy,’” said Amy BrownHolappa, a speech language pathologist at Polinsky. “They start questioning mental health, and they start going down a path that is not necessary.”

Brown-Holappa and some of her colleagues attended an annual Minnesota Brain Injury Alliance conference last year at which hundreds of masks were exhibited and the documentary by Minnesota filmmaker Jed Schlegelmilch was shown. They came back determined to bring the project to Duluth.

PHOTO COURTESY ESSENTIA HEALTH-POLINSKY MEDICAL REHABILITATION CENTER

THE ‘SWEET 16’

Zmudy, an extroverted teacher and musician who lives in Duluth, was eager to participate, he said. Since sustaining a brain injury in what he will only describe as being “hit in the head extremely hard,” Zmudy has struggled with what he calls his “Sweet 16” of symptoms. They include dizziness, nausea, vision changes and severe headaches.

But Zmudy, a youthful-looking 49, shows no outward signs of those conditions other than the dark glasses he wears because another symptom is light sensitivity.

Creating the masks, and then listening to each other explain their stories, was a moving experience, he said.

“Each step of the way was filled with people laughing, people crying, people wondering, people worrying, people being optimistic, people being understood for the first time since they’ve gotten hit in the head,” Zmudy said.

Heads nodded in agreement around the room when he talked about the loneliness of brain injury, Zmudy said.

“Because as early as yesterday, I could do all these things I loved,” he said. “And today, I can’t do any of those things.”

Misunderstood

Like Zmudy, Jugasek was moved beyond her expectations.

“I didn’t realize how emotional that time was going to be,” said Jugasek, 67, of Sturgeon Lake.

“Because when doing that mask and then having to write about it and then we all stood up afterwards and talked about it, I could hardly write.”

Jugasek was working as an accountant at Dougherty Funeral Home in Duluth and living in Proctor when she was hospitalized for what initially appeared to be a stroke, she said. The medication she was given caused bleeding in the front part of her brain.

Although she could tell something was wrong, particularly with her ability to choose her words, Jugasek could make herself understood and she looked normal, she said. It took a long time and help from occupational therapists to get her into speech therapy.

“When I did this unmasking, it was really nice,” she said. “Because I met some other people in there that had the same issue as me. Because when people look to me or talk to me, they think: What’s your problem?”

Vision Affected

Smingler, 30, an educator at the Great Lakes Aquarium, has had two traumatic brain injuries, she said. The first was in 2013 when the pain of stomach cramps caused her to black out and fall, with her forehead hitting a radiator. That, she said, caused dramatic personality changes.

The second occurred in January 2017, when the car she was driving was struck by a truck. It wasn’t at high speed, Smingler said, but the impact caused a brain injury that severely affected her vision.

“For the longest time, I couldn’t see anything that was moving,” she said. “If I was moving, then I couldn’t focus on anything. It made nearly every task … pretty impossible.”

Smingler and Zmudy both credit Dr. Terrence Tancabel of Litchfield

Eye Center in Litchfield, Minn., with helping them overcome the worst of their vision difficulties. Smingler can drive for short distances now, she said, but her eyes still feel pain and fatigue easily, and sunny days are especially challenging.

In different ways, Smingler, Zmudy and Jugasek designed their masks in ways that divided the hurt of their brain injury and their hopefulness.

One side of Smingler’s mask contains hopeful words, she said. The other contains questions.

“Well I ever get to stop asking for help?” she asked. “Will I ever get to be self-sufficient? Will I ever get to feel like an equal partner in my relationships? … Will I ever be well enough to have a child if I wanted to?”

Questions like those had as much impact on the therapists as on the participants.

“It was so unbelievably moving,” said Teri Hallback, an occupational therapist at Polinsky. “I was almost speechless. It was so powerful. …

“And they realized that they weren’t alone. They’re not alone. There are other people experiencing the exact same things, the same frustrations.”

The understanding that she wasn’t alone in her journey was crucial to Smingler, she said.

“We’re talking about paper masks,” Smingler said. “We’re talking magazines, tape, glue, scissors. We’re not talking expensive materials.

“But the impact is something I will never forget.” v