Brain injury survivor uses social media to spread hope

For many people, social media is a way to keep in touch with friends and family. For Mike Black, it has become a way to help save lives, starting with his own.

On May 21, 2011, Black was involved in a serious car accident in Orlando, Florida. Black was ejected from his vehicle on impact and landed on his head, shearing his brain stem.

Black was in a coma for several weeks, and doctors were forced to remove a portion of his brain in an effort to save his life. His prognosis was grim.

"Quite frankly, the doctor didn't think he was going to make it," Black's mother, Bernadette Coleman, said. "The only reason they gave it a shot is because he was young."

Black's mother and stepfather, Allen residents Bernadette and Tom Coleman, flew to Orlando to be by his side. Because of the demands Black's care placed on his parents, they often found themselves unable to keep the rest of their family informed of Black's progress. They found a solution through social media, creating a Facebook page called "The Beans Recovery Group."

Though the page began as a means to keep family and friends informed of Black's recovery and progress, it soon found a much wider audience.

"What's crazy is other people started to join the site," Bernadette Coleman said. "People from all around the world started to follow him on Facebook, and many of them were people who had suffered a traumatic brain injury or had a family member who had suffered a traumatic brain injury."

While Black fought for his life, the new visitors to his Facebook page provided not only encouragement and support, but also information from their own experiences that gave the Colemans hope that their son would pull through.

"When the doctors were telling us that there's probably not going to be any hope, chances are he's not going to wake up, other people were saying 'my son was in that same situation a few years ago, and he's getting married next month,'" Bernadette Coleman said. "Those stories of hope and that interaction with those people gave us more power to fight."

After several months of rehabilitation, Black made significant progress. During that time, his mother told him about support he and they received online.

"We would tell him about Facebook and how the people we met on Facebook are still following him, and those were the people who gave us hope when things were really bad," Bernadette Coleman said. "And one day he just said, 'Well, why don't we start a Facebook for people who are going through what we went through?'"

As fortune would have it, Tom and Bernadette Coleman's company, Advice Interactive Group, had been creating similar sites and tools for many other projects, and was uniquely suited to launch Trymunity, a brain injury social network, on May 21, 2012, the one year anniversary of Black's accident.

"We were in a perfect position to create something like [Trymunity]," Tom Coleman said. "We could have just come up with the idea that there should be a Facebook for people with traumatic brain injuries, but we were in a position to actually build it."

Black and the Colemans intended Trymunity to be a place for people to share brain injury experiences, get support and learn about what resources are available - much as Black's Facebook page did for them.

"It's a source of hope for people because they're able to talk to people and see 'well my son just had an accident and is lying in a hospital bed, on his deathbed essentially. I could pull the plug right now because that's what the doctors are telling me. But there's a guy a year out from that same exact accident and he's walking around on a walker, he's chatting on his phone just like he was, he's a 27-year-old guy again,'" Tom Coleman said.

Success stories such as those shared on Trymunity are crucial, because relatively little information is available on traumatic brain injury, and treatment can vary widely from case to case.

"Right now, unlike other injuries and diseases, there is no standard of care for traumatic brain injury," Kim Russell, executive director of Trimunity, said. "If all of us for some reason had leukemia, we would all get the same standard of care, but if we had a brain injury, they would reinvent the wheel with all of us; we would all get something different."

Russell's daughter was born with brain tumors 15 years ago, and she became a part of Trymunity in part so future traumatic brain injury patients will have access to knowledge and treatment options her family didn't have.

"No one understood my grief, no one understood my tears," Russell said. "If this would have existed 15 years ago, I can only think how much further along we would have been."

Trymunity has already begun to attract the attention of the highest-profile brain injury victims: athletes. Former Dallas Cowboy Eugene Lockhart has joined Trymunity's board of directors, and several retired NFL players are Trymunity members, including some of the 3,200 plantiffs suing the NFL over hiding information that linked football-related head trauma to permanent brain injuries.

"These NFL players are all over it, knowing that although they are affected, it's not an 'NFL' disease, it can happen to anyone," Russell said. "What we do is to really create a safe place for these guys to go on and share information, and a way for them to encourage others."

Lockhart is set to host an event,"16 Seconds," next April at Cowboys Stadium. The name "16 Seconds" refers to the fact that in the U.S., a traumatic brain injury occurs every 16 seconds.

For Black, Trymunity's growing community is only making it easier to give help to those who need it most.

"I feel great about this. It's just helping people out that really need to be helped out," Black said. "And it still helps me. I still go on it and find new stuff out. It's been a blessing."

For more information on Trymunity and overcoming traumatic brain injury, visit www.trymunity.com.

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