An Advocate’s Journey

After struggling in the aftermath of an undiagnosed brain injury, Elayne Masters made it her mission to be a voice for this community.

Throughout the course of her life, Elayne Masters estimates she has sustained more than 20 head injuries. The “big one,” as she calls it, happened in 2015, when she fell down her basement stairs.

She walked away from the fall “without a scratch” — but not unscathed. During the course of her fall, Elayne ricocheted off the walls twice, injuring multiple areas of her brain.

She saw her doctor the next day. He sent her home without a prescription and told her to let him know if she started experiencing any nausea or dizziness.

Over the following weeks and months, different symptoms began to crop up, but she didn’t connect them with her head injury. “I didn’t feel the things he described,” she says. “I was having trouble reading, I thought it was because I needed new glasses. I was having trouble on the computer, I thought I was just tired.”

It took two more years for Elayne to get a diagnosis of persistent concussive symptoms. “During those two years, I almost lost everything – friends, family, my business, the ability to take care of myself in the most fundamental ways,” she shares.

When she finally got a diagnosis – an explanation for why she was struggling so much – she made it her mission to make sure no one else ended up where she did. “Those two years were awful. I didn’t want someone to not get the help they needed,” she says.

That desire to be a voice for people struggling with brain injury, without the support and resources to work towards healing, led her to advocacy work.

Initially, Elayne was involved in advocacy surrounding food insecurity. At the same time, she was working with a cognitive therapist and explained what some of her advocacy goals were – namely, that she wanted to become more involved in brain injury causes. She connected with the Brain Injury Association of Pennsylvania, her state Brain Injury Association of America (BIAA) affiliate, and joined their group on Capitol Hill for the first time in 2019.

Since then, Elayne has attended BIAA’s Brain Injury Awareness Day events in D.C. five times.

“It is such a joy and a delight to be surrounded by people from around the country with various forms of brain injury all together,” Elayne says. “The energy created in that setting – it’s hard to put into words, but you feel, in that setting, there are people there who really get you, and you don’t have to explain every little thing. To be in person with that many people who share your experience is profound.”

Conferences like the National Brain Injury Conference and Awareness Day can be an overwhelming experience, especially for people with brain injury, but Elayne says she appreciates how BIAA and other sponsoring organizations make the effort to break down information into manageable pieces. She also called out the pre-event communication and webinars as being particularly helpful when preparing for Awareness Day. “By the time we’re there in person, we’ve seen and heard about the issues we’re advocating for that year. So, bit by bit, even if it’s a lot to digest, you begin to get familiar with the language from the sheer repetition of it all. You get familiar with the issues and what they mean for the brain injury community at large, what it means for us individually.

“To me, I feel like that event really shows the scope of the work that BIAA does to advocate for the well-being and the rights of individuals with brain injury,” Elayne says of the National Brain Injury Conference and Awareness Day. “It’s incredibly empowering to go to your congressional representative’s office and talk to them or their staffers about our personal stories and experiences. It gives authenticity to what they’re hearing. It makes us not a number; it makes us more than a statistic. We’re a real person in that office.”

What’s unique about BIAA’s advocacy efforts, Elayne says, is the way the organization brings the political and the personal together. “In bringing those together, you see the big picture of the brain injury community while recognizing and honoring us as survivors and our individual stories. To me, that’s what ‘My Brain Injury Journey’ is all about. Each person’s brain injury is unique, like a snowflake, and ‘My Brain Injury Journey’ shines a light on each snowflake in that blizzard. BIAA not only highlights each individual, but they’re looking at the whole picture.”

For those who are just beginning their journey into brain injury advocacy, Elayne suggests not focusing on trying to understand every single thing. “Take what little you can and build on that,” she suggests. “For me, at first, I felt like I needed to understand all of this. But I realized, ‘I’m not going to be able to.’ Focus on a few highlights, take those nuggets, and year by year, you learn, grow, gain more information, and get a little bit more awareness. You can develop the parts you feel a personal connection to.”