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How My Brain Has Been Permanently Affected by Post-Concussion Syndrome

I’ll never forget April 10, 2014. It was unlike any other day I ever had. I first heard this loud, repetitive beep and it made my head hurt so bad I just couldn’t handle it. With my eyes still shut, I tried to say, “Make it stop,” but my mouth wouldn’t move and I couldn’t talk. My eyes popped open and what I saw made no sense to me. I was alone in a room, lying on a very uncomfortable bed. I saw a blanket hanging from the ceiling on my right. In front of me I could see a glass wall. This beeping wouldn’t quit and the pain in my head was indescribable. I had cords and tubes all over and with my hands I pulled off one of the cords. Suddenly, the steady beeping turned constant and this lady opens the glass wall and runs in to my side. She comes up to me and says, “Emily! Good morning! So glad you’re with us again! You had a severe car accident and suffered a mild traumatic brain injury, but you’ll be OK! You should make a full recovery!” She removed the intubation tube, the wires and quieted the monitors and I was evaluated by my neurology team.

Over the next three days, I was moved to the trauma-medical/surgical floor, lovingly referred to as “trauma-regular” by all the hospital staff. I worked with occupational therapists, physical therapists and a social worker. The social worker was concerned I wouldn’t be able to handle the financial burden and wanted to make sure I would have support for the next month in dealing with things like billing, insurance, dealing with my car and still having my needs met. Physical therapy helped me remember how to walk again, even though I had this pain in my hip that wouldn’t go away. Occupational therapy assisted with my memory, poor sentence structure, figuring out what words I wanted to say, figuring out spacial and distance issues my vision seemed to be struggling with and helping me complete basic home living skills.

In three days I was sent home, even though I was still failing all my neuro questions they’d ask me three to five times a day. By the end of my stay, I remembered Obama was the President, I was in a hospital on the west side of the Twin Cities, I lived in Minnesota and I knew it was April 2014. The first couple days I stayed with my parents at a brother’s home. For the next two weeks, I stayed at a friends’ house. Then, I went home and continued my recovery and went back to work.

Over the course of the next month, I would struggle so hard with sound, lights, depth perception and had this horrible dizziness as I sat up or laid down. I would try to read and I couldn’t understand what I was reading, but I could read the words just fine. I would forget what I was saying mid-sentence, or even get words mixed up. For example, I remember once telling my co-worker, “Can you purn the tan around for me?” We got a good laugh, but this was constantly happening and deep down I was so frustrated. The only thing that felt good was darkness. Darkness became my best friend, which was a big deal since I had hated the dark since I was little.

I finally talked to my regular doctor and he sent me to vestibular rehabilitation, which did wonders for me! The dizziness went away and the disconnected feeling I had in my head did too! I was feeling so encouraged, but that left over the next few weeks when nothing else improved.

It was around July when my doctor and I talked about what I couldn’t do. I explained I couldn’t go into a large room with a lot of sound without getting a migraine. If there were lighting effects, I had to walk out of the room. If there were sounds while someone was talking in a classroom setting, it would feel like it was right by my ear. I had been diagnosed with chronic migraine by this point too, so I was getting migraines constantly. I felt like all I was doing was sleeping, which was very discouraging. At this point, I saw a neuro-ophthalmologist who said my eyes were great, but my brain was not taking things in like it should and this was why reading was a struggle. He gave me several exercises to do and the exercises were able to help my brain reconnect with what my eyes saw. I was finally able to read and understand again.

As time went on, I learned to walk out of the room if I couldn’t handle it. I wore ear plugs if the sound was too much. To church, I would wear ear plugs, a hat and sunglasses sometimes. I sat in the front row in a classroom setting so I could hear first the most important things and attempt to tune out the rest behind me. I learned to take darkness breaks a couple times a day by sitting in a dark closet or room with no lights for 10 minutes to just let my brain reset. I learned to make sleep a priority and go to bed timely so I got the eight to 10 hours my brain needed. Even with all of this, I was still struggling.

I went back to rehab in the fall to a concussion clinic. I did occupational therapy and vision therapy. My struggles dramatically improved and I was no longer dealing with a lot of things. The neurologist I saw explained to me I most likely experienced up to five concussions in my car accident. I was t-boned in the driver’s front quarter panel, did a 360, t-boned in the driver’s rear quarter panel, did another 360, and then flew forward and hit a light pole head on. Since I had had a previous concussion as a young 10-year-old, my brain would have taken longer to recover with a second concussion, let alone multiple concussions in one single event.

My car accident was very extreme and while putting me on advanced life support at the scene saved my brain from further complications, the concussions were already done. My neurologist said I should have been kept in the hospital until I passed my neuro questions 100 percent every day. He also felt I should have kept up with therapy for three months afterward. It was a relief to speak to a professional who didn’t think I was making it all up and who affirmed my symptoms had a name: post-concussion syndrome. I was told concussions are called a mild traumatic brain injury, but there is nothing mild about them. They completely disrupt your life and in order to recover, a patient needs silence, darkness, no screen time and lots of patience. My neurologist said that improper care the first three months can lead to permanent effects, which the patient has to learn to adapt to. This was the category I had fallen into.

My permanent effects don’t disrupt my life in dramatic ways, but just enough to make a difference so I feel it. It is also hard because, like others with a traumatic brain injury, I remember life before the accident that changed everything. At 3:30 p.m. on Wednesday, April 9, 2014, my brain was permanently affected, even if I do not have any memory of it as I type this.

One thing that is affected is the ability for my vision and brain to process lighting changes together, which is why lighting effects are a huge struggle for me to this day. I can notice a slight difference when I step out of the shade and into the sunlight a lot more than anyone else, so I need to wear sunglasses, or I will close my eyes just before the transition and open them in the light.

Another difference is I can no longer memorize number sequences, passwords or dates. I have to write them all down somehow, keep a calendar and keep contacts updated in my phone.

I also can no longer process loud sounds, so I do not go to concerts, arenas or extremely large places. I really struggle with background noises of clicking pens, bouncing legs and ruffling papers. To deal with this one, I often will sit in the front of the room or wear headphones and listen to music so I’m focused on one thing. I also am not afraid to ask a restaurant to shut off their overhead music, or turn it down at the least.

Lastly, I dim my screens and try to set them so the blue light is off/low and use the night light setting with a medium brightness. I also wear glasses when I read now because it makes it easier for my eyes and brain to work together.

Several years have passed and many things are different, but what has never changed is my thankfulness. I’m still thankful to have survived. I’m also thankful for the EMTs at the scene who knew that when I was getting worse, the best thing to do was put me on advanced life support; doing so saved my brain from swelling and bleeding.

Post-concussion syndrome is real, but is just starting to get recognized in the medical community. Don’t be afraid to advocate for yourself or someone you love if there’s no improvement from a concussion. Don’t be afraid to be brutally honest with your doctor about what is not better and how you’re not fully recovered. Don’t be afraid to fight for yourself and stay committed to the rehabilitation and exercises you’re given, no matter how weird they are or how silly they look. And don’t ever give up because you’re alive for a reason and that’s something to be proud of, not regret.

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Thinkstock photo via George Doyle.

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