My TBI Story

When I tell people I have a TBI or a closed head injury they usually assume it was from a car accident or some massive tragic event. Mine was actually caused from a horse bite to my right temporal lobe. A freak accident- which just goes to show that TBIs can occur anywhere or anytime. When I was first bit, I was knocked unconscious for what we believe was less than five minutes. When I regained consciousness, I was “fine.” I was responsive, talking and alert. My head and jaw hurt but other than that I had no other major symptoms. I went into the ER and was diagnosed with a concussion and a dislocated jaw but was released to go home after. I woke up 8 hours later and was completely terrified. I couldn’t walk, I couldn’t talk. I didn’t recognize my parents, or my surroundings. My vision was blurry and among other things the pain was one of the worst I’d ever experienced. I didn’t know anything about my life. I didn’t know where I was. I didn’t know who I was.

I don’t have a lot of memories from my accident but from what loved ones have said it was the worst 24 to 48 hours of their lives- to watch their daughter, sister, and friend become unrecognizable. I went in for a CT scan and a MRI- my scans were clean, my brain looked normal- but my symptoms were anything but. The staff suggested that it was a very severe concussion and that my symptoms would subside within six to eight weeks. I was placed in Physical Therapy as well as Occupational and Speech Therapy three times a week for the initial eight weeks. As a 15 year old straight A, type A personality, freshman in high school, I was failing my classes. School became intolerable. Noise, light and daily conversations became sensory overload. I was eventually put on a limited school schedule to accommodate for more therapy and doctor appointments. Splitting my time between school in the mornings and therapy during the afternoon and evenings.

As the weeks passed and my symptoms worsened, I was diagnosed with Post Concussion Syndrome. The medical definition: a set of symptoms that may continue for weeks, months, or a year or more after a concussion – a mild form of traumatic brain injury. The normal person definition: We aren’t sure what’s wrong with you, but this gives you a name for all the symptoms you are having.

At this stage in the game, everything was difficult. Normal activities we take for granted on a daily basis became difficult. Multi-tasking was thrown out the window. I had no working short term or long term memory as well as the ability to recall. My facial recognition worked 35% of the time. The pathways I used to have no longer existed. There was no normal here. Just broken sentences and mix matched names and faces. A severe game of memory and trivia that I didn’t want to play.

Nearly 4 months after my accident (16 weeks from injury date) another set of scans were performed. This time, it revealed a brain bleed in my right temporal lobe as well as damage to the frontal lobe. We don’t know why it took so long for something to show up- but I am incredibly thankful that something did as it altered the way I would recover and the resources I would use.

After learning about how complex the brain really is, I grasped the concepts and areas of my brain that were damaged (See blog post Lobes of the Brain ). There was so much wrong between the memory components and physical ailments, we (myself, my family or my doctors) didn’t know where to begin. My confirmed diagnosis became a Severe Traumatic Brain Injury. I became enrolled in Cognitive and Speech therapy to retrain cognitive functions and create new pathways; physical therapy to retrain my brain how to communicate with my body- relearning how to walk, lift objects and other basic functions; occupational therapy focusing on handi-coordination, detail oriented tasks, visual stimulants. Vestibular therapy teaching my eyes how to coordinate fluently again (see Vestibular disturbances after TBI blog post for more details) as well as searched for a neuro-psychologist and grief counselor. Each helped serve a vital role in the initial parts of my recovery. I would continue to attend therapy for three years (until 2015).

2015 was a big year for me. It was the year I graduated from high school and therapy. It was the time I had always dreamed. But when the time came to be released from therapy- I felt like I wasn’t ready. Believe me I wanted to be but I wasn’t. Not because I would miss it or for I feared my life would be incomplete without it but rather because I felt I hadn’t recovered as much as I wanted to. I felt like there was so much more I wanted to learn and rehabilitate and accomplish. But based on the five point scales, the written exams and short mandated tests, there wasn’t anything else they could legally do for me because I had reached all goals for a patient with my symptoms and injury. I regained my strength to walk and ultimately run again, I constructed and built new pathways that helped me to remember, learn and be able to live independently. My words and sentences were making sense and what I thought I was saying and what I was actually saying were the same thing.

I had made a “miraculous recovery” by any of my doctors’ terms. But I didn’t recover to the extent that I wanted to. So I went searching. I searched for any and every therapy being used for people with TBIs. I compared and contrasted my accident with the people who have Alzheimer's, Dementia and Strokes and learned that some therapies are compatible across the board. In addition, sought out the doctors and medical professionals most of the medical community will tell you are “quacks” (See more at Recovering after Recovery blog post). I wasn’t ready for my doctors to be right. To allow this to become the rest of my story. I wanted more than to just stand and walk and kind of remember. I wanted it all back. Not because I wanted to be normal but because I knew I was capable of more. I knew there would be moments in my future that I would want to be able to handle and not be fatigued or times in my life I would want to enjoy and be able to take part in.

Doctors predicted that a “full recovery” could take anywhere from 8-12 years after my original accident. As I’m sitting here writing this, I’m sitting at about 7.5 years in. Things are a lot better but I’ve got a list of things I’m still trying to work on and improve. Medications I’ve tried and gotten off of. Medical trials I’ve participated in. New doctors and second, third, fourth opinions. Take it from me, recovery is frustrating. Recovery feels like you’re going somewhere and nowhere all at once. I can’t tell you that my injury is the same as yours or someone you know but I can tell you that there is joy in the small victories. That eventually you will find peace during your healing process. It may not be today or tomorrow or next week, but I can tell you that it exists and that it will get worse but it’ll always go up from there.