Founding a nonprofit organization to educate about brain injury - from the perspective of those affected - has been a dream of mine for a very, very long time. I was motivated by the anger I felt towards my medical providers following my own brain injury. I had to deal with the ignorance, insensitivity and incompetence of providers who did not tell me I had had a traumatic brain injury (TBI), one of the many causes of an acquired brain injury (ABI). I eventually lost my civilian (transportation management specialist, DOD) and reserve (Transportation officer, United States Army Reserve) careers.
After a traumatic brain injury, where I had a loss of consciousness over asphalt resulting in a subdural hematoma and subarachnoid hemorrhage, I was diagnosed with a “seizure disorder” and “major depression.”
I know I fell and I hit my head and I knew something was wrong, but I didn’t know what. I kept thinking it would go away when I could get more sleep. Nobody referred me to any resources for help or support. My doctors obviously weren’t trained on how to address the long-term sequelae of brain injury or how to help someone who has had one. I don’t want what happened to me to happen to others. Read about my experience here.
I decided to turn my anger into something constructive; and, with the help of others affected by brain injury and professionals who care about the ABI community, we published five free newsletters to educate about brain injury. Professionals wrote articles in laymen’s terms, and survivors and caregivers shared their experiences. And, we found generous sponsors to help with the printing and mailing costs.
The demand for the publication was greater than expected and I decided to form a nonprofit organization. Thus, the Brain Injury Connection (BIC) was born.
My dream is to bring the brain injury community – those affected by an ABI and those who work with the ABI community – together to educate the medical community and the public at-large about acquired brain injury.
My hope is to find brain injury specialists to work with us to enhance doctor-patient relationships and the public’s perception of brain injury.
My ideal would be to ensure that every community could provide the necessary resources for individuals affected by brain injury. I want people affected by an acquired brain injury (ABI) to know immediately, i.e., prior to leaving the Emergency Room, they are not alone, and there are resources available to them and how to find them.