Support group rebuilds community for traumatic brain injury survivors

Pamela Tolliver just wants people like her to know there are other people like them, and that it’s OK, that they have somewhere to go and someone to talk to.

Around the turn of the century, Tolliver started the Wayne/Holmes County Traumatic Brain Injury Support Group. Its ranks swelled over the years, and then COVID came, and Tolliver practically had to start over. Nobody was going outside at the time, certainly not members of this particularly fragile group.

“We have had Amish come down and Mennonites from Holmes County,” Tolliver said. “Before COVID we had a large group come down to the counseling center. I’m trying to get people back together again.”

Little by little the group is growing again. Meeting on the second Tuesday of each month, for the time being at the community room in Buehler’s Milltown, Tolliver will welcome anyone who maybe just needs a bit of empathy, someone to lean on or just listen.

Nearly 3 million people sustain a traumatic brain injury in the United States each year. More than 5 million live with a disability as a result of that injury.

Tolliver, once an aspiring neuropsychologist, had to give up that pursuit as a result of a car crash three decades ago. Owner of two master’s degrees, she had to end her academic career because her brain would no longer allow it.

She was down because of that, but not out. She knew she could still make a difference as a neuroscientist, if not a credentialed one.

“I am the neuropsychologist, but I have to work with people on this side and not in a laboratory,” she said. “I’ve taken myself and made a totally different life. I could have stayed and pouted about it and stayed in a trance. I’ve opened doors, new doors to life, and I’ve opened these doors with help.”

Help is the key — knowing it’s available and getting it. Right now the knowing is an uphill battle. Because of stigmas that come with TBI and not knowing where to turn, people may not know where to seek help.

Mac Hawkins of Wooster went out for a walk about a year ago when he slipped, and his life changed in an instant.

“What happened was I fell and never got my hands in front, and I just faceplanted,” Hawkins said. “I remember walking into the door of my daughter’s house, and my wife said, ‘What happened to you?’ I was bleeding copious amounts, and I said I fell, and that’s all I remembered about it.”

This is now Hawkins’ life. He doesn’t remember. It took him half a year just to figure that out. Last June he and his wife went on a cycling trip to Nova Scotia, a two-week excursion. When he got home, he remembered none of it.

“I see my mind as a brick wall, and since June to this very day and every day, memories are being pulled out,” Hawkins said. “Along with that has been severe depression.”

Depression is another battle TBI victims must deal with. In Hawkins’ case, depression was real, and medicine made it worse, leading to suicidal thoughts. He got things adjusted and is now back to dealing with the memory issues, but nothing much beyond that.

Hawkins has learned dealing with TBI is a trial-and-error process. The caregivers have answers, but finding the right one can be a challenge.

“You don’t accept a drug that’s not working for you; you don’t accept counseling that’s not working with you,” Hawkins said.

Whether because of medication or something else, the darkest of thoughts are common. Kathy Gerber had them. Like Tolliver, the Orrville resident incurred her TBI in a car crash, hers nine years ago.

She also had suicidal thoughts, but with the help of the support group and some old-fashioned common sense — “You’ve got to be preventative; you can’t just be normal,” Gerber said — she is able to take life day by day, and while it’s not the life she once had, it’s still good to be among the living.

“I’m just glad to be alive,” she said. “A good day for me is to not have headaches on the side of my head.”

Gerber has been a member of the support group for a number of years. She says it’s helped her immeasurably and knows it can do the same for others.

Gerber said TBI sufferers sometimes don’t realize what they can still do, that they believe they can’t even get out of the house. She speaks from experience.

“Initially, when I went, it made me feel more normal,” she said. “It made me feel like somebody, like I wasn’t making it all up. I just want to help people that have gone through this.”

Tolliver said one of the biggest hurdles facing a group like hers is that unlike the things leading people to other support groups, TBI is impossible to spot. It’s invisible.

“It’s called the silent epidemic,” she said. “All this damage is inside my brain, and people can’t see it. I want to lead them where they need to go so they won’t be lost in the shuffle.”

Hawkins attended his first group meeting in November. He said he will be back. He felt a benefit immediately and believes others will too.

“It just relieves the pressure to listen to what’s going on with me is not unusual,” Hawkins said. “I know I’m not crazy.”

As for the rest of the world, those who don’t live with a traumatic brain injury, Gerber, Hawkins and Tolliver provide a cautionary tale. They are proof positive of the fragility of life and how it can change in an instant.

With that in mind, Hawkins said it’s not something that should be on anybody’s mind, at least not too much. Things happen you can’t see coming and certainly can’t avoid. A little prevention goes a long way, but constant fear will make a life more miserable than a brain injury would.

“I don’t want people worrying about it,” he said. “If they intuit from it that they need to be careful, that’s fine. But live your life.”