You’re not alone: Heads Up For Hope support group connects local brain injury survivors and caregivers
As some sit and chat while others put the finishing touches on their paintings, a few people bring out a plate of mini-cupcakes with candles in each. Everyone starts singing “Happy Birthday” to a member of the Heads Up For Hope brain injury support group. She’s surprised and delighted, and as she blows out her candles, someone starts slicing a real cake to avoid potential COVID-19 danger.
The group spent the afternoon painting a vase of sunflowers, with instruction from brain injury survivor and Silverthorne-based artist Jeremy Greene, and enjoying each other’s company. Saturday, Sept. 12 marked the Heads Up For Hope brain injury support group’s first formal workshop.
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Heads Up For Hope (HUH) has been providing support for brain injury survivors and their caregivers for two-and-a-half years. Its main goal is to help everyone affected by brain injury realize one simple thing: you’re not alone. Most importantly, it wants everyone in the Vail Valley to feel welcome to join and supported if they need help coping with their brain injury.
Steve Lucido is one of the founding members and a current board member. He sustained a serious brain injury after a car accident in Edwards. After he was released from the hospital for his physical injuries, he didn’t realize that his erratic behavior was a direct result from his then-undiagnosed brain injury. He ended up in California, and was able to receive supportive care from the Polytrauma System of Care, at the Veterans Affairs unit at La Jolla. But when he returned to Vail after seven months, he lost his support network.
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“I was really floundering here. I was going to therapy, but I didn’t have anybody that was like me,” he said. “I need my people. I need people that I walk in a room and I say something, I don’t have to try to explain to them. They understand.”
The support group, made of 31 injured members and 29 caregivers, meets twice a month at the Edwards Interfaith Chapel, on the first and third Monday of the month at 5:30 p.m. Meetings are also available on Zoom. At meetings, everyone is welcome to share their stories, their experiences and tips and resources for managing their injury, which can be lifelong.
According to the Brain Injury Association of America, “brain injury is unpredictable in its consequences and can change everything about us in a matter of seconds.” There are traumatic and non-traumatic brain injuries. Traumatic injuries are usually caused externally, in a fall, assault, physical abuse, a motor vehicle accident or during a sport, for example. Non-traumatic brain injuries are caused by internal factors, like stroke, disease, meningitis, electric shock, tumors, seizures, carbon monoxide or lead poisoning and drug overdose.
Both can have serious impacts on the way survivors are able to live their lives following their brain injury. Many don’t know they’ve sustained a brain injury until after they’ve been treated for whatever caused it. It can severely impact their work and home lives, as well as their relationships, memory and behavioral health.
And as much as a brain injury affects the person who has it, caregivers know the struggle just as well as their loved one does. Board member Leslie Davis is a caregiver for her brain injured son, who’s in his 20s. Of course, it’s hard to watch a loved one go through anything difficult, but Davis has been able to see positives and grow closer with her son because of it.
“I always tell him that he’s my hero because of all that he’s been able to go through and still come out of it, most of the time, with a positive attitude,” Davis said. “I want to be there and try to guide him, but then I think too, he’s got to do it. You have to let them spread their wings, but it’s hard, harder than the average child because they are more vulnerable.”
Discussing these issues, as well as tools and techniques to deal with them, is a main focus for HUH. A shared space, experience and sense of “you’re not alone” is what has brought the members close together.
“It’s hard to be part of a community when you have a brain injury, because there’s a lot of things that make it difficult for someone with a brain injury to engage,” said board member Diane Smooke. “Where do other young people go? Let’s meet up for lunch, or dinner, or go to a bar. That’s really hard.”
Smooke is a retired occupational therapist who spent some of her career treating brain injured patients immediately after their injuries. She was looking for volunteer opportunities, and an ad in the Vail Daily convinced her to offer her services to HUH. Turns out she was also in a book club with Lucido’s wife.
“They quickly lassoed me and said, ‘oh no, you’re staying,’” Smooke said. “I have learned so much from this group.”
Smooke’s training in occupational therapy helps her act as a neutral party while using her professional understanding to further the group’s goals. She’s fascinated by what she learns while watching people “living with their brain injury,” outside of the rehabilitative contexts in which she treated patients while working.
One cycle that she has noticed among brain injured people is that when they do engage with friends that don’t understand the injury, they get frustrated by the brain injured person’s forgetfulness. As a result, the injured person stays in their home and self-isolates to avoid feeling the anxiety and depression associated with that interaction.
But members in HUH recognized these patterns with support from each other. They became friends by going out on hikes together, fishing together, meeting at the park. They’ve found a community of similar people who are able to understand why certain activities aren’t as available to them as they would be to someone without a brain injury, like concerts, Smooke said.
Now, HUH is organizing those outings and activities formally. The art therapy workshop marked the group’s first formal workshop, and it hopes to continue these activities. Group members certified in yoga instruction through Love Your Brain, a non-profit dedicated to improving quality of life for those with brain injuries, have started offering 30-minute yoga flows and mediations before the bi-monthly meetings. They also hope to bring in speakers and try music therapy in the future.
“It’s important that we do regular, normal things that everybody else does. This painting was something that anyone can do, even when you think you can’t paint,” Smooke said. “To be able to have this program for our people who have brain injuries and for our caregivers, I think that is really cool. It’s empowering. It builds confidence.”
But the most important thing, Lucido said, is talking.
“When people walk through the door, what they need is that camaraderie,” he said.
Jamie Wahrer, one of the group members, sustained her brain injury in a snowboarding accident on Vail Mountain. Her traumatic brain injury wreaked havoc on her work life and her personal life. It was hard for her to handle emotions. Though she had her parents and boyfriend-now-fiancé helping her, she had frequent panic attacks and struggled with depression, even though she had never had mental health issues before. It took five years for her to start feeling better and find medications that actually worked for her.
“I just didn’t understand what was going on,” she said. “I just wanted to find someone that was going through something similar.”
When she heard that there was a brain injury support group starting, she was excited, even though the prospect of new things usually would send her into panic attacks. She couldn’t make it through her first few meetings without needing to leave with her parents, but she slowly became more comfortable with her peers. She started going to the meetings religiously. Now, Lucido said she’s one of the group’s most integral members.
“I’ve met so many different people, I’ve got what I would call my close friends now,” Wahrer said. “We’re able to relate to each other. We’re able to explain something and know that the other person really understands what I’m saying. When I say I forget things all the time, most people are like ‘oh, that happens to me,’ but I’m like, ‘no, you don’t get it.’”
The group helped Wahrer open a mental door that’s helped her deal with her brain injury. And now that she’s been able to cope with it better, she wants everyone to remember that understanding and patience are so important to people with brain injuries.
“You can’t see our injury. It’s not like breaking a leg. You can’t see that I have super bad social anxiety. It’s debilitating,” she said. “We’re trying the hardest we can.”
For more information about meetings and joining the group, contact Diane Smooke at email@example.com or 717-250-5180.