Often dubbed an “invisible injury,” a traumatic brain injury can have far-reaching effects on a patient’s life—from their health to their family dynamics to how they feel about themselves and their experience post-injury. But one group is offering a community to help with all that—and more: the Brainiacs.
“I witness first-hand the endless struggles, stigma and isolation patients and their families experience every day,” says Heidi Spitz, Psy.D., Director of Outpatient Neuropsychology at Burke. “No one understands. Insurance companies deny coverage. Doctors misdiagnose and at times miss it all together. (CT scans and MRIs can be normal, so what’s the problem?) Families and caregivers do not have the knowledge to fully appreciate and comprehend the hardships ahead. Many times, they become frustrated with their predicament and withdraw from the community.”
That’s where the Brainiacs come in. Formed in 2014, the group numbers about 250 and works to both increase awareness of what daily life—including the stressors and challenges—is like for someone with a TBI, as well as foster a sense of community and engagement among its members.
“Brainiacs is a community transforming the TBI care model for young individuals in the rush hour of their lives,” says Dr. Spitz.
One patient who has benefited immensely from the group: Lisa. In 2013, at age 51, Lisa experienced a traumatic brain injury—and had a myriad of post-injury symptoms, including apathy and detachment, that were both alarming but also difficult to understand and cope with, particularly for her family.
In 2014, Lisa began working with Dr. Spitz, who created a care plan that included individual and family treatment, as well as participating in a number of Burke’s outpatient psychotherapy groups.
“Recovery from brain injury is never a straightforward/predictable process. Just like with other patients, the presentation of Lisa’s brain injury fluctuated over time. Consequently, the treatments were constantly tweaked to best meet these revolving and unique changes,” explains Dr. Spitz.
After some time, Dr. Spitz suggested Lisa join the Brainiacs. “I purposely did not put Lisa in this group initially,” she explains. “By the time Lisa joined the group, she was feeling safe and ready for the next step; Lisa was ready to learn to explore new and practical solutions for coping more effectively with her difficulties.”
And becoming part of the group had a profound effect on her life. “As odd as this is, I felt my maternal instincts awaken as I listened to these heart-breaking stories,” Lisa says. “And I began to want to help. I knew how hard it can be when a young person has something happen that changes the entire course of their lives,” she says. She explains that she no longer felt alone and that the group has helped her come to terms with her new life.
“Brainiacs provided the community that shared my experiences and gave me validation and acceptance of the new me. I felt more energetic and hopeful among the Brainiacs. This is such a special group of people,” she says.
And Dr. Spitz has seen tremendous strides in her as well: “In this new group, Lisa gradually became a leader. She became more prominent in the group and started to express her thoughts and personal struggles more openly, leading the way for the other group members to follow.”
Today, Lisa takes an active role in the organization, helping to run its “No One Left Behind Fundraiser,” where the group sells merchandise to raise funds for various programs. Plus, it helps raise awareness as well as prepares many of its members to re-join the workforce, says Dr. Spitz.
The group also runs the Brainiacs’ Buddy Program, which pairs those who have recently experienced a TBI with more veteran members. “This opportunity has been a win-win for everyone involved and ensures no one takes this road alone,” explains Dr. Spitz of the program. “For the new member, this connection fosters hope, reassurance and encouragement, as well as a resource for obtaining useful information about additional services at Burke from someone who is further along in the rehabilitation process.”
Along with these, the group takes part in a variety of activities, including visiting local schools to do outreach, hosting monthly lectures, and participating in events such as Burke’s Brain Injury Awareness Day and Heels & Wheels 5K. At the latter, they raised over $8,000 in honor of Alan Spar, a member who passed away. Plus, they host a holiday party and communicate regularly to offer one another support.
“I wear my Brainiacs shirts with pride, as it has such meaning for me,” says Lisa. “I am sure many people feel the same way as I do. It is a symbol for the understanding we have for one another in a world where our injuries are not understood."