Anything from a slip and fall to a car accident or a blow to the head during a rough sport play could lead to a Traumatic Brain Injury (TBI). According to the CDC, in the United States alone, an estimated 1.7 million people sustain a TBI each year, and of them, 52,000 die and 275,000 are hospitalized. More than 1.3 million are treated and released from an emergency department, but the impact of a TBI can last well beyond a hospital visit.
It’s been five years since Janine Kirby’s brain injury and she’s still in recovery. Kirby, 41, was accidently hit in the head with a steel beam while working as a project manager at a construction site.
“I immediately couldn’t move my left side. I couldn’t talk, I was vomiting, but I never lost consciousness; I remember every minute of it,” she said. “About 18 months after the accident, I started experiencing seizures 2-5 times a week. I haven’t worked since then. I had to learn how to talk in full sentences again and I had significant weakness on my right side for a long time.”
Every brain injury is different. Like Kirby, brain injury survivors may experience a range of difficulties with cognitive function, memory, speech, language, vision, perception, and more. TBI may also result in some physical changes, such as seizures and temporary paralysis, but the majority of the lingering difficulties experienced by brain injury survivors are unnoticeable to the average passerby, often leading to painful and dangerous stigma.
Limitations and stigma
In studies of brain injury, researchers have found that people with TBI often experience problems with stigma and social isolation. In a process of recovery that may go on for many years with good days and bad days alike, a brain injury survivor may seem perfectly fine on one day but physically and mentally worn on the next. In addition to experiencing stigma from family, friends, co-workers and others, survivors may also wrestle with self-stigma, or negative feelings about themselves.
Natanya Sortland comes from a family of intellectuals. After a series of head injuries—a subarachnoid brain hemorrhage in 2014, and multiple head collisions in 2015 as a result of violent seizures—Sortland was forced to give up her job as a professional dog trainer.
“I’d worked for 14 years to get to that level. For three years I’d tried very hard to work but I began to need help from my aide more and more,” Sortland recalled. “Eventually my employer asked me to train my assistant as my replacement. My brain just couldn’t do it anymore. It didn’t matter how much energy I had, by the afternoon, my brain was just unable to handle the complexity that was required to manage so many dogs.”
Sortland found it very difficult to accept her new limitations. While she respected her employer’s decision to let her go, she struggled with negative thoughts about her abilities, especially around her family.
“One of the hardest things about a brain injury is being in the intellectual world that I’m used to but not being able to engage in the same way. My intellect has really suffered; it’s like I have this fabulous library that I can’t access anymore,” she said.
Sortland later decided to change careers and found positive support and a renewed purpose in brain injury advocacy.
Finding resources and support
Brain injury support groups and conferences often serve as a much needed forum for TBI survivors to find resources for their healthcare needs and to express feelings about brain injury recovery while connecting with others who understand their experience.
When Candace Gantt suffered a severe TBI as a result of a bike accident 13 years ago, she had difficulties finding the resources and support that she needed to recover. She founded the Mind Your Brain @ Penn conference because she wanted to make sure fellow brain injury survivors, their families, and caregivers received the support she once had trouble finding.
"Recovery from a brain injury can take months, and often times, years,” Gantt said. “As an athlete and TBI survivor, I understand this journey ... it's a marathon! But you need a training plan; you need a coach, support and resources to help you get to the finish line. I believe the conference does just that.”
Midway through her recovery, Kirby also found relief by engaging in volunteer activities, mentoring kids in her neighborhood about wearing helmets and advocating for brain injury research funding. Kirby says she’s found support groups and conferences like Mind Your Brain to be particularly helpful in overcoming stigma.
“The sense of community and knowing that you’re not alone is extremely important to beating that stigma,” Kirby said. “I’ve been walking around for the past five years thinking I’m a black sheep and I found a whole herd of people just like me at Mind Your Brain; it made me feel comforted to look at somebody else and know that they understood what I was feeling.”