Living with a brain injury can be lonely and feel isolating. The person has suffered a traumatic injury that affects their daily life, possibly for the rest of their life. That’s compounded by the fact that it’s an invisible disability, unseen by the outside world. Resources can be difficult to find, and connecting with similar people can feel impossible.
Liz Miller, a middle school science teacher who lives in Oakland, knows what this feels like. “I felt incredibly alone and very angry that I couldn’t find help when I was suffering so much,” she said.
For 15 people with brain injuries, the Rockridge Library became a safe haven this summer.
Over six sessions, they built trust and community together during mindset workshops organized by Miller. Each session had a theme (such as “realistic optimism” and “gratitude”) and included guided talks and activities. Participants shared resources (like sunglasses for light sensitivity), doctors, procedures, websites, and apps.
Mark Nathan, who participated in the group, said he hoped joining the group would help him learn to “live with (his) deficits and stop stressing about them regularly.” He said he benefited from hearing other participants' stories.
“My main takeaway from the sessions was the remarkable similarities of people's experiences, despite differences in backgrounds and causes of injury,” he said. “It was a gift to be able to get together with other people who are working towards recovery from a brain injury.”
The sessions were open to caregivers as well, and Nathan’s wife, Laura, attended.
“I learned about some experiences that are common for those who experience brain injuries,” she said. “We got some good resources regarding treatments and therapies that we could explore to improve my husband's well-being. The sense of community within the group was wonderful.”
The sessions were organized by Miller, who, after a traumatic brain injury, struggled to find support.
Miller’s brain injury was caused by a car accident. She didn’t lose consciousness, and she drove home from the accident. A week later, she began feeling nauseous, felt like she couldn’t move her eyes, and became very sensitive to light and noise.
Her symptoms intensified with time, and she became unable to work. While she suffered from “an incredible amount of pain,” she struggled to find proper care. Doctors gave her outdated advice, like to just rest and stay in dark rooms. Her mental health suffered.
While she did eventually find a neurologist who could help her, she still feels the ongoing effects of her brain injury five years after the car crash. These include limited energy, and her speech slows when she’s fatigued. “I’ve had a lot of PTSD from the accident,” she said.
The loneliness and isolation from the brain injury weighed on Miller. When she looked for groups to join for people with brain injuries, she couldn’t find anything in the Bay Area. There were groups for athletes who had concussions, but nothing for people with similar conditions as hers. She kept telling herself, “I can’t be the only one.”
She wasn’t. A neurologist told her about the Love Your Brain Foundation, a nonprofit organization that helps people with traumatic brain injuries improve their quality of life. She attended an online group and found it transformative.
“It was the first time I was with people who knew what I was going through, and we were all speaking the same language,” she said.
After attending an in-person retreat, she was inspired to become a facilitator for Love Your Brain online groups. Her experience at the retreat and leading online groups also inspired her to create an in-person group.
At first, she struggled to find a free space. But she had taken adult art classes at the Rockridge Library, which, in many ways, was a perfect location—a space that could be dark and quiet, handicap-accessible, and close to public transportation. She connected with Anita Bowen, the adult services librarian.
"It really quickly became so clear just how much need there was, how much interest there was,” Bowen said. The calls just kept coming in, and they continued to come in until the very last day."
With the need clear, Miller will lead another six-week mindset workshop series at the Rockridge Library starting on October 8.
