Advisory Council Shares Tips for Building a Community
Categories: Living with Brain Injury, THE Challenge!
Recently, members of the Brain Injury Association of America’s Advisory Council joined Greg Ayotte, Director of Consumer Services, for a live virtual event about building community after brain injury. During the event, Carole Starr, Cazoshay Marie, Kellie Pokrifka, and Paul Bosworth shared their experiences with building a community after brain injury, including the opportunities, challenges, and more. Read on for excerpts from the event:
As a survivor, how have you built your community?
Carole: For me, it was a very step-by-step process, and it really started one on one for me. Groups, after my brain injury? It was just too much for me. Too many people, too many stories, too much emotion. I could barely handle my own brain injury, I couldn’t handle much from anybody else. But I was going to brain injury rehab, and I met one other survivor. And her story was similar to my story, she had been a teacher too. We started going to lunch together once a month, and we shared our stories. And that helped me to not feel so alone.
How has having a community benefited or affected you?
Kellie: When you look fine, and a lot of people don’t know much about brain injury and what’s going on, there’s a lot of comments saying, “Is it really that bad?” And you start to internalize it, and it feels absolutely horrible, because you need that support. You need people saying, “I believe you, I see you, I want to spend time with you, even if it is just staying on the couch all day, I want to be there for you.” But, I feel like a lot of us don’t necessarily always have that. And the loneliness and the losing people is so extremely difficult on top of what we’re already going through with our physical and emotional symptoms. I would say that having community – once I had those people who have shown me that will stand by me – it strengthened my relationships with them so much.
Paul: We ran a support group for a very long time. In that process, I found folks meeting each other as family. They weren’t family, but now they are, because we share that common bond – we’ve been there, we’ve done that, now what do we do? We can help the next person out.
What are some of the challenges of building community with brain injury?
Cazoshay: I really think one of the biggest challenges is that level of vulnerability that it takes to build community. And when you have a brain injury, you’re already feeling vulnerable in so many different ways. So to add something else, to have to put yourself out there, to be transparent, to show up as your authentic self rather than trying to be who you were, or not show how you’re feeling, it does take a level of vulnerability and bravery, and that can be a challenge.