Recently, we heard from a TBI survivor who wanted to share her story in the hopes of raising awareness about what life is like for a survivor. She is a prospective future resident of Villa Licci and a member of local support groups. Here is her story and mask as part of a project coordinated by Unmasking Brain Injury.
After lunch one Sunday, my niece wanted to cheer me up for my birthday, since my dad had died seven months prior. My niece was going straight on a green light when a lady disregarded her own red light and turned right in front of us. Our front passenger side hit her passenger side. When I woke up in a haze, I couldn’t speak or move.
I later found out that I almost died in the wreck and from misdiagnoses from doctors. From the hospital I was transferred to the Rehabilitation Hospital of Kokomo, then transferred to a “rehab unit” in a nursing home, from which I was released a about a week later. Neurologists could not explain my lack of balance, and eye tracking problem because Indiana did not have doctors who specialized in cerebellum disorders which causes balance issues, nystagmus and other problems. After thirteen years, on April 5, 2018, a Neuro-Ophthalmologist diagnosed me with a severe brain injury that includes cerebellum damage, Trochlear nerve palsy, Trigeminal neuralgia and other injuries. That doctor could not understand how my brain injury was misdiagnosed and how I was not hospitalized for at least a couple months.
My mask represents two different sides (lives) of me: my life prior to the car wreck and my life now.
The blue side was my life prior to the car wreck. I was living in Bloomington IN, where I started to work on a doctoral program (Ph.D.) in Health Behavior (now called Public Health) and Family Studies as well as working as an Associate Instructor (A.I.) at Indiana University (IU). I enjoyed life on a Big Ten campus, where I had earned my master’s degree. I liked living in Bloomington with various cultures and being part of the IU community. I loved to go out with friends, was very physically active and attended various community and cultural events. I was involved in my church. I had good health insurance through IU and I was relatively healthy.
The red side is my life now. Everything changed in an instant. Sadly, my whole world as I knew it, was gone. I am not able to live in Bloomington, attend IU, work, or be with friends and colleagues. I moved back home to Russiaville, IN, to live with my mom. I am not as physically active as before. I am able to ride my recumbent bicycle since I am not able to ride my old two wheeled bicycle due to my balance. I lost most of my friends and I miss being physically and socially active. It is very difficult and lonely, living with a rare “invisible injury” such as a brain injury. No one can see my injuries and still no specialist understands my disorder like they do in the Northeast.
To learn more about some of Maria’s struggles post-injury, and how she is helping other survivors, read this article from the IU School of Medicine.
Pictures of Maria and her friends and family:
To learn more about the mask project and hear from other survivors and their family members, please see our previous story: https://villalicci.org/unmasking-brain-injury/.
