Creating a More Brain Injury-Friendly Community

Community members gathered bright and early on Thursday, March 12 to Wake Up! with United Way and explore the complex topic of “Creating a More Brain Injury-Friendly Community.”

We welcomed Jean Capler, Local Support Network Leader for the Rehabilitation Hospital of Indiana Resource Facilitation Program, and Rebecca Eberle, clinical professor with IU Speech, Hearing, and Language Studies. They helped us understand the networks in place to support individuals in our community who are living with brain injuries. Additionally, three community members, Michelle, Cathleen, and Nick, who are living with a traumatic brain injury joined the panel to share their experience.

Capler explained that brain injuries encompass many different conditions, which can be caused by physical trauma, stroke, lack of oxygen, brain tumors, exposure to toxic chemicals, effects of disease, or even chemotherapy. 

According to Capler, about 8.5 percent of Americans have experienced a brain injury, which includes minor concussions. About 70 percent of people who have experienced a brain injury recover with no lasting effects, but around 5.3 million Americans are living with disability due to a brain injury. 

However, many people who have experienced a brain injury don’t always know it, Eberle added. 

“There’s a large group of individuals that go undiagnosed,” she said. She particularly spoke about military veterans who have not received a diagnosis for injuries sustained during their service.  

To truly understand the effects of brain injury, we heard the stories of three individuals living with a traumatic brain injury: Michelle, Cathleen, and Nick. 

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Michelle was attending a conference in Orlando, Florida when she was struck by a car while crossing the street. She sustained two skull fractures and additional brain trauma from impact, resulting in a coma.  

When she woke up from the coma, she had to rehabilitate her body after lying still for so long, in addition to recovering from her injuries. 

Her unadjusted medical costs totaled over $1 million. Even with her insurance, her out-of-pocket costs were substantial. 

After some healing, Michelle was able to return to Bloomington. But her recovery did not end there. She has since undergone three eye surgeries and ankle surgery. She is also coping with PTSD caused by the accident.  

She was able to return to work as a music librarian at Indiana University, but it has not been without its challenges. Michelle said that her coworkers have struggled to adjust to the changes in her personality caused by her brain injury. That aspect of her recovery has also been hard on her family.  

“It’s my new normal,” she said. “And it’s a new normal for everybody else who has known me.” 

In terms of care, Michelle has found difficulty with finding mental health care that properly integrates the effects of her brain injury. She now attends the IU Speech, Language, and Hearing clinic’s brain injury support group. At first, she was hesitant to go, but it has helped her find support.  

“It’s been a great learning experience,” she said. “I’ve learned so much.” 

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Nick was 15 years old when he acquired his brain injury during a basketball game. After a trip to the emergency room, he was sent home when his CT scans appeared normal.  

But a few weeks later, Nick was driving with his mother when he experienced a sudden headache and blurry vision. When he returned to the doctor, his tests continued to appear normal. 

“The things that they could see were normal, in terms of the tests. But in terms of the symptoms, I certainly didn’t feel normal. And I didn’t feel that way for another six years before I got any diagnosis,” he said.  

For much of that time, Nick did not even know that his brain injury was the cause of his symptoms. He continued to go to school and graduated high school. He went on to college, but his symptoms made it difficult.  

Due to low attendance because of symptoms and surgeries, Nick left college with hopes of returning quickly, but he continued to struggle to find a diagnosis. After he received one, he was finally able to begin to see specialists and receive proper care.  

“I would not have been able to do any of that had I not been able to stay on my mom’s health insurance while I was going through all of it,” he said. 

Nick went through multiple forms of therapy, including visual, occupational, physical, speech and hearing, and psychological. 

“There’s no one-stop-shop for brain injury,” he said. “It’s so many different elements of your life that are affected.” 

Nick now attends the brain injury support group at the Indiana University Speech, Language, and Hearing Sciences clinic, where he says he’s benefitted from connecting with people who share experiences with him. 

“It’s very therapeutic to talk about it with that support group,” he said. 

Nick is also involved with the City of Bloomington Council for Community Accessibility. He said one of the benefits of this involvement is discovering the overlap of experiences he shares with people who live with different disabilities. 

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Fourteen months ago, Cathleen was driving home from work when she was hit broad side by another vehicle in the driver’s side of her car. She was admitted to the emergency room and sent home on concussion protocol. By the next morning, she noticed significant impairment of her speech, balance, and visual focus.  

“The last 14 months have been filled with rehabilitation, education, a lot of life modification, and some serious emotional and financial anxiety,” she said.  

Cathleen is a licensed clinical therapist who specializes in dementia and leads an adult day program. Her accident quickly prevented her from working.  

“My voice and my ability to communicate was the cornerstone of my professional life, and my speech fluency was 13 percent,” she said.  

It took eight months before Cathleen was able to return to her work at all, and she is only now beginning to work part-time hours. She was diagnosed with post-concussion syndrome, which greatly affected her memory, attention, balance, and both mental and visual focus.  

“There’s no way we could have anticipated how many things it would affect,” she said.  

Thanks to her work, Cathleen was familiar with many connections and resources that helped her navigate her recovery, but the process was still long and overwhelming. She underwent occupational therapy, driving rehabilitation, physical therapy, vision therapy, neurocognitive treatment, speech and hearing therapy, and saw a sleep specialist.  

Her husband, John, was a huge support throughout this experience for Cathleen. The accident set back their life planning by almost two years. They moved from their home to a condo to decrease their household management.  

“I have an amazing partner,” Cathleen said. “So, that’s another piece of it, right? Without an amazing partner, things would have been very different for me.” 

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Answering the question of “How do we create a more brain injury-friendly community?” is complex, but the discussion delved into some ideas.  

“What I heard from our panelists is how crucial their supports are,” Capler said.  

Not everyone who experiences a brain injury has those supports. That is why Capler says one of the best ways to be brain injury-friendly is to raise awareness so people can easily be connected to resources and supports that they need. 

“That will literally save a life,” she said. 

Eberle echoed the importance of public awareness and she added that increasing access to services is imperative. Individuals who have experienced a brain injury often need many kinds of services that overlap to support their recovery and treatment.  

“As a professional, nothing makes me sadder than when I meet an individual and have a lot of ideas for things that can support them, and I can’t help make it happen,” she said.  

Michelle, referencing her medical costs, agreed that access and affordability of medical services is a huge barrier for many with a brain injury. 

Cathleen commented on the stigma associated with both brain injury and disability, and how we should all promote awareness to break down that stigma. 

“I think stigma and community are both important, and we can’t have community if we’re hung up on stigma,” she said.