When Craig Sicilia created the TBI Survivors Network, he envisioned an online chat room for people with traumatic brain injuries from Spokane, Washington to share experiences and create support groups.
Two years later, the network’s international community has more than 1,100 members who use it for everything from venting to cognitive rehab to advocacy campaigns. For Sicilia, who obtained TBI in a car accident in 2006 , the project represents a new, and more expansive, way people can communicate with others and create the social network they often lose when they are diagnosed with TBI.
“People out in the middle of nowhere on a farm can get involved with people 100 miles away. It’s awesome,” said Sicilia, host of the weekly hour-long radio program Brain Injury Radio. “People want to hear other people’s stories. There are a lot of people with TBI out there doing incredible things and this is a great way for people to hear about them and for us to archive their stories.”
Penny Condoll, a member and former chair of the state’s TBI Council, created the Brain Energy Support Team three years ago to help form support teams for the more than 160,000 people with TBI in Washington State. She said that upon finishing therapy for their TBIs in the hospital, people with TBI often feel like they have been left behind.
Through programs such as PEER, which sets up mentor-mentoree relationships for people with TBI, and online programs using devices such as Skype allowing people to communicate from their homes, Condoll’s organization is constantly looking for ways to help people adapt to the sudden changes in their lives.
“The quest for knowledge after you have a TBI is huge. Following my TBI, I spent considerable time seeking and searching for all the information I could,” Condoll said. “For some people with brain injuries, coming into groups, with all the people and the lights, is troubling. The technology allows them to build social support networks in a new way.”
Sicilia and Condoll often collaborate on projects with the support groups, from education to outreach efforts. Though they agree that the state’s infrastructure for supporting people with TBI is improving, misconceptions about TBI remain prevalent.
“The stigma of brain injury makes people thinking that intelligence has been affected,” Condoll said. “People don’t realize that we are intelligent if we have time to speak.
“In the TBI community, there is a real push to educate people about TBI. Over and over people with TBI are saying ‘We are not stupid.’ ”