In honor of brain injury awareness month, I thought I would write this blog about my brain injuries and how they affect me and my family.
I recently discovered that what I thought was my first brain injury, was actually my second. My Dad recently found pictures of me after my first head injury at one years old. Apparently I fell while at our church and slammed my head into the ground. The pictures are below.
My second brain injury was at the age of 5. I was playing on the jungle gym on my first day of kindergarten at a new school. I was at the top of the structure, reached for the top bar to swing across, and missed the bar. I fell down the inside of the structure hitting my head several times on the way down. Here is a picture of me on the jungle gym before the accident, and some pictures of the injury days later.
That was the most severe. The other head injuries I have had, and remember, are:
- Fell head first into a rock fireplace at about 8 years old.
- Car accident around 10 years old, where the car we were in was t-boned by a motorcycle at a high rate of speed.
- Playing football at the park with friends around 16. I ran into a friend who was twice my size losing consciousness momentarily and then seeing a black line across my vision for a while.
- Getting drunk around 18, passing out, and having a kid at the party beat me up kicking me in the head.
- Trying to make an arrest while working security around age 19 and being punched in the head knocking me unconscious.
- Leaving my parents house around age 30, slipping on ice and slamming the back of my head into the concrete walkway.
- Banging my head into walls, tables, etc. when getting frustrated or angry up until about a year ago.
Those are the traumatic brain injuries that I am aware of, and I truly believe there are more but I just don’t remember them. I also believe that I have an aquired brain injury from having Mollaret’s meningitis.
My first experience with Mollaret’s meningitis was at 21 years old while in the San Bernardino County Sheriff’s Academy. We had just finished a class run, and were settling into our classroom for a class. I was sitting in my chair and all of a sudden got really weak and passed out on the table. I was taken to the emergency room, where the ER doctor diagnosed me with viral meningitis after conducting a spinal tap. I ended up spending two weeks in the hospital on IV antivirals and was unable to continue with the academy after that. Below is a good video from Meningitis Now explaining how only one experience with viral meningitis can have lasting effects.
In June of 2009 I had all of the signs of viral meningitis again. We made a same day appointment with the nurse practitioner at my doctor’s office because we thought you couldn’t get viral meningitis more than once. After my examination they told us to go immediately to the ER to be tested for meningitis. They performed a spinal tap and verified that I had viral meningitis once again. The infectous disease doctor that was consulted also had a PCR test performed to verify that I had herpes virus in my spinal fluid. Because of this, and my history or having viral meningitis before, I was diagnosed with recurring viral meningitis, also known as Mollaret’s Meningitis. This time I was able to get a PICC line installed so I could administer my IV antivirals at home for two weeks.
After finding out I had viral meningitis for the second time, and having another milder flare up months later, Jessica was able to realize that I had been having mild flare ups of viral meningitis since the first time at 21. After this diagnosis I continued to have flare ups that required me to take 2-4 weeks off of work at least once a year, if not twice or three times. Since about 35 years old I have been continually declining in health.
In July 2015 I ended up having a breakdown at work and becoming unable to continue working. Leading up to this we were just discovering that I had PTSD. Months after this occured I also ended up in the hosptial for a week because of suicidal ideation. Just prior to this hospitalization I worked with the Centre for Neuro Skills for brain injury rehab, and was accepted, but insurance wouldn’t cover the cost so I didn’t get the necessary treatment. Shortly after my hospitalization I also met with my neurologist who offically diagnosed me with Traumatic Brain Injury and Mollaret’s Meningitis. After officially getting the name Mollaret’s Meningitis I was able to find other people dealing with the same disease.
Two months after being hospitalized for mental health issues, I started having seizures. I went through all the testing and it was determined that I did not have epilepsy, but nonepileptic seizures.
After a year of dealing with the seizures, and significantly declining in health to where I have a wheelchair on order, I was also diagnosed with Functional Neurological Disorder (FND). As explained by Dr. Stone, FND expert, FND is basically a glitch in your software. They can test your brain all they want, but it will probably show normal. Just like if your computer gets a virus. Your hardware will test okay, because the virus is causing problems in the software, not the hardware.
I explain all of that history to say that I believe brain injury started my decline in health. I believe that my history of head injuries explained above makes it a possibility that I may have Chronic Traumatic Encephalopathy (CTE). At this time though, the only way to difinitively diagnose CTE is postmortem with an autopsy. Then if you add Mollaret’s Meningitis, where I have chronic viral meningitis, you can see where I think my serious decline in health is coming from. Unfortunately Mollaret’s Meningitis, FND, and CTE don’t have enough research to be able to definitely treat me so I can get better. I just have to manage my symptoms as best as I can and hope that things don’t get worse.
Brain injury is a serious thing that needs a lot more research, and I hope that by sharing my story it might help to do that. Below are some resources to research my conditions if you are intersted.
Here are the videos I have created related to my brain injury, and Mollaret’s meningitis.
As always, remember. Life’s Hard; Be Kind.