A Mother’s Brain Injury Journey From Crisis to Advocacy

When Renee Johnson’s son BJ left for his freshman year of college on a baseball scholarship in 2012, it represented the fulfillment of a dream—for both him and his parents. But just 32 days later, what began as a sinus infection led to a life-altering brain injury that would reshape the family’s future.

A Sinus Infection Turned Stroke

After BJ called home about a sinus infection, delays in getting antibiotics—complicated by his recent transition to adult healthcare at 18—allowed the infection to develop into something far more serious. Several days passed without hearing from him and Renee called 911 for a wellness check. On the way to the hospital, BJ became unresponsive, and he had to be life-flighted to a hospital 60 miles away.

“We consented to brain surgery while we were on the road,” Renee recalls of the frantic drive to the hospital, over 200 miles away. The sinus infection had turned into a subdural empyema, bacterial meningitis, and encephalitis. “When we saw him, he was on life support and paralyzed on one side of his body,” Renee says. “Just weeks earlier, I had been planning hotel stays to watch his baseball games. Now, everything had changed.”

The Invisible Challenges of Brain Injury

While BJ’s physical paralysis resolved within days, other challenges emerged over time. When he enrolled in a school closer to home in Ohio eight months later, Renee noticed personality changes and academic struggles that hadn’t existed before. “We weren’t advised of the cognitive and behavioral changes he might experience as a result of the brain injury,” she explains. “We thought the hard part of his recovery was over”.

Her search for answers and support led her to the Brain Injury Association of America (BIAA), where she connected with Greg Ayotte, BIAA’s Director of Consumer Services. “Greg was phenomenal,” Renee says. “He provided me with countless resources. He talked to me for hours.”

This support inspired her to start LOBIS (Loved Ones of Brain Injury Survivors) when she relocated to Charlotte. “There are so many conflicting emotions when you’re a loved one caring for someone with a brain injury,” Renee says. “You never want to sound like you’re complaining. After all, I didn’t lose my ability to do anything that night; my son did.”

Personal Experience Becomes a Professional Mission

The challenges of navigating life after brain injury—everything from medication management to housing and employment—inspired Renee to transform her existing nonprofit (Jessie’s World, an organization dedicated to Renee’s late mother that helped individuals achieve sobriety and independence through supportive services and reentry programs) into Triumph Services. Triumph Services provides behavioral health services to survivors of trauma, including acquired brain injury. The organization’s name was inspired by BJ’s “Triumph over Tragedy” tattoo.

Through her work, she discovered many of the women she had previously served in reentry programs had also suffered brain injuries. “I understand the correlation between brain injury and homelessness and the criminal justice system now,” she explains. “I advocate for each of our clients like they’re BJ. I’ve had to fight for resources. I’ve had to find the right doctors. When you have information, you feel more empowered—and that’s what I want to provide for these clients: resource facilitation.”

Advocating for Change

Beyond Triumph Services, Renee serves as the governor’s appointee on the North Carolina Brain Injury Advisory Council and as a Charlotte City Council member for District 4. Under her leadership, the city has recognized Brain Injury Awareness Month, lighting up the skyline to raise awareness.

She advocates strongly for recognition of acquired brain injury (ABI), distinct from traumatic brain injury (TBI). “When there’s only awareness around a certain type of brain injury, it alienates survivors like my son,” she explains. Many state and federal programs specifically target TBI, excluding those with brain injuries from other causes like infection, stroke, or oxygen deprivation. Last March, she traveled to Washington, D.C. with hundreds of other brain injury survivors and caregivers to advocate for expanded funding that would include ABI survivors as part of BIAA’s Brain Injury Awareness Day.

Life Today—and Looking Forward

Now 30, BJ lives independently despite ongoing obstacles. “I remember one time he said to me that he almost wished his scars were bigger so that people saw that he had a brain injury,” Renee says. Because he “didn’t look disabled and the lack of understanding,” BJ wasn’t able to qualify for Social Security, although he has struggled with employment because of issues with challenges in executive functioning, memory, and other challenges due to the frontal lobe injury.

“It’s a journey—a healing journey,” she says. “But I always remind myself—this is not a sprint; it’s a marathon. My son is the strongest person I know, and I see my role as the person who continues to build him up and support him.”