KAILUA-KONA — In his second bike accident, Jim Gustin was hit by a car driving 55 miles per hour and shattered the vehicle’s windshield with his head. It’s no surprise a serious traumatic brain injury (TBI) followed.
Jim had to relearn how to eat, dress, brush his teeth, and even speak and walk.
Nearly three and a half years later, Jim demonstrated dramatic recovery during last week’s Brain Injury Support Group meeting at Hawaiian Rehabilitation Services.
The attendees, in partnership with the state Department of Health, took part in international project, “Unmasking Brain Injury,” in which TBI survivors create masks to express their experiences living with the condition. The project aims to shine light on an often invisible disability.
“I’m going to start out with dark down here, because after the TBI my mind was blank,” said Jim, gesturing to a sketched plan of his mask.
“Then it’s going to grow gray, then it’s going to get lighter until it joins a rainbow … because that’s where I’m at. I’m able to see a broad spectrum of things, where as (before) over here it’s kind of a narrow spectrum … and this is my web of confusion,” Jim pointed to a printed pattern of a spider’s web.
Group and healing begin
The support group was founded 24 years ago by Karen Klemme, former nurse and current private-practicing case manager for the Department of Health.
Klemme began the group after witnessing the lack of help available on the Big Island for a client with TBI.
“It’s just in my DNA to help people,” said Klemme on why she organizes the group.
“I leave after the meetings and I am so energized by the group,” she added.
Jim, on Wednesday evening as he was walking and talking, revealed no brain injury symptoms — at least none detectable to the average eye.
Although his condition has vastly improved, the trauma’s symptoms persist. He needs medication to help his brain filter information, and still struggles with emotional challenges from TBI.
“Any little quirks to our personalities … are all exaggerated and exacerbated,” Jim’s wife and caregiver, Janice Gustin, said. “They’re really magnified.”
Janice also created a mask at the support meeting. She’s a perfect example that TBI not only affects survivors, but their friends and family as well.
“It helps you stop and think about it,” she said of making the mask. “I still have everything buried. I have PTSD because I was there, I heard him get hit.”
Janice has also weathered her own health problems while caring for Jim.
“I had a benign tumor that turned cancerous — probably due to the stress — which had to be removed, and then I had to have radiation,” she explained.
Her mask depicted her healing.
“I want a nice lei, an eyelash lei,” she said, “to show that my body is happy now.”
Working through frustration
Some support group members used their mask as an opportunity to make a macro-statement.
Dan Kauth’s mask read, “Kaiser Permanente Kills.”
Kauth had a coffee business prior to his TBI and was lifting 130 pound bags, “all day, every day, 200 days straight,” he said.
The strain from his work resulted in a torn carotid artery. Kauth went to Kaiser with traumatic axonal injuries in his brain, but he said Kaiser sent him home, stating nothing was wrong with him.
Soon after, the torn artery caused him to pass out at a concert, where he was revived by an physician assistant. Kaiser attributed Kauth fainting to the five beers he had consumed that night, he said. Three weeks later, the torn carotid artery prompted a stroke, leaving him with a TBI, and with it, expressive aphasia.
“I’m trying to enlighten people that Kaiser Permanente is bad because they don’t take responsibility for their actions,” Kauth said about his mask.
“You’d watch his face, and it was like he couldn’t speak,” remembered Clemme of Kauth’s early days.
Fortunately, the support group helped Kauth get carotid bypass surgery at Duke University Hospital by connecting him with a social worker to get his disability benefits and his Medicare.
After the surgery, Kauth was able to speak, his balance improved, and the tingling and numbness from the stroke stopped.
But Kauth still faces daily struggles from his brain injury.
“I can’t work. I have to sleep 10 hours a day. It’s really sad,” he said. “People (with TBI) … look fine, and they’re not fine. (People) use that as an excuse to not pay attention or help someone.”
Coming to terms,
keeping the hope
Dr. Stephanie Smedes’ mask demonstrated the still shattering impact of her TBI.
During her work as a practicing veterinarian opthamologist, she was hit in the head by a dog.
“The real issue came from the non-diagnosis for the injury for over three years,” Smedes said. She explained she had three surgeries, two of which made matters worse for her TBI.
Her mask was marked by key words that embodied her experience.
“I feel like I have broken intellect, broken memory, broken cognition, a broken concentration. And that’s led to problems with family, function, self-esteem, my role in society, friends, finances. I feel like a shadow of me and I feel like I don’t fit in. Like there’s the door, you’re not part of us anymore,” she said, pointing to words inscribed on her mask.
Smedes hoped the mask project would help raise awareness about the disability, leading to better treatment of survivors.
“I still get those looks like, ‘What the hell’s wrong with you?’” she said. “I’m used to being the brainiac, and instead I’m getting looks like, ‘Why’d they bring the stupid one,’ you know?”
She also wants the project to inspire those with TBI to get help.
“It’s not just about coming here and having support, that’s important. It was the idea that I could have had help earlier,” Smedes said. “There’s a couple doctors (group members) have been able to point me to that I didn’t know about.”
Smedes stressed an integral part of her experience with TBI is keeping hope and taking action to improve her condition.
“I usually only have about two really good hours a day,” she said. “For me, it’s about always trying to keep hope.”
Improvement a reality
Janice agreed that improvement is attainable for those who suffered a TBI. After all, she’s seen the results firsthand.
“We’re in a time where they know you can retrain the brain, so we’ve been lucky,” she said.
And Dr. Theresa Wang’s mask suggested that hope is warranted.
Wang survived two TBIs.
On Christmas Day in 2008, Wang had a brain aneurysm. Eleven months later, she survived a major car accident.
“I was driving to go to a doctor’s appointment in Kona, and (the car) crossed the center line on the highway and I didn’t have time to get out of place so they rolled over, hit my car off-center, front hit,” she described. “They were a big giant SUV and I was in a sedan, and they basically rolled up my car and using it as a springboard, they basically shot my car across into the lava fields.”
“I’m very lucky,” she said, remembering her two survivals.
When asked what people should know about TBI survivors, Wang smiled. She’d crafted a cat mask, commemorating the resilience of survivors.
“We have nine lives,” she responded.
For more information about Traumatic Brain Injury, the Neurotrama Supports helpline can be reached at 733-2155.
What a worthwhile story. There but for the grace of god go any one of us. I like when you feature stories like this that share in their own words the impact and ripple effect in the lives of those in our community that have unimaginable challenges in their lives.