Words are powerful. But words are only words. After my severe traumatic brain injury I had to relearn language and simple words. It was a difficult journey to get where I am today. I often have a hard time finding the right word to use, misunderstanding someone’s joke and trouble understanding or following a conversation. It’s also quite hard for me to stay focused during a conversation if there is more than one person talking. I have a hard time following all the different “lines” of discussion. It is exhausting trying to piece it all together and keep up so others don’t see that I am lost or having difficulty understanding. If I have ever seemed uninterested in a conversation, it is because of this. I am not dumb or rude, my brain is just getting overloaded. It’s crazy to think that a simple conversation for most can now completely overload my brain and overwhelm me to the point of shutting down. It has been a very tough road.
During my speech therapy this was something we continuously worked on. My therapist would play background noise while I had to complete a task. Generally my task would be something as simple as playing boogle or just trying to find words in a picture. It was extremely hard. This is when the swelling rage would appear. Luckily after awhile I learned how to detect when I was getting angry and my defenses were down and I would shut off to prevent a blow up. Something that I also have to deal with now, that goes along with my brain getting overloaded, is that if I am in a conversation and I say I need to stop talking, I really mean it. I have to stop and take a break from all the thinking and I need to take time for my brain to process what is being discussed. Once I take a break I will be able to come back and join the conversation and be fully present, but if I can’t take a break my brain will over work itself and shut off. Just imagine a cartoon character when they get mad and steam comes out of their ears, that’s exactly how I’m feeling in these moments except I’m not mad. My brain is just working so hard to keep up and process everything that it starts to overload.
My stamina fluctuates. I will have good days where I can handle more stimulation but I will also have my bad days where it takes everything my brain has just to process a simple conversation of “good morning. How are you? How are you feeling today?” Cognition is a very fragile function for a severe brain injury survivor. Brain injury rehabilitation takes a very long time, it takes years. And even after years go by and I may look or seem back to normal, my brain will never be normal again. Even though today I look like the old Kaylen, please resist expecting me to be who I was. The girl I was before June 11 is dead and gone. She will never come back.
It is frustrating trying to go about life after a severe brain injury. I seem to constantly get “stuck” when my brain is trying to process information. This is difficult because during these times when I’m “stuck” during a conversation or task people want to help. So they will try to coach me or suggest to me ways to help me figure out whatever it is I’m stuck on. During my therapy I had someone who would come with me and they would do this. I believe they were trying to help me but it actually hurt me because they didn’t allow me to do it for myself. They would just finish the task for me. Even though this was their way of helping me because they didn’t like to see me stuck and frustrated with myself, it set me back.
Retraining my brain:
I am now pretty “rigid”. I have to do tasks the same way every time because I am retraining my brain. This has caused a lot of problems for me because I have had people tell me to loosen up or I need to do things differently, but I simply can’t. It’s hard when you aren’t understood. I have to be rigid and do things the same way because repeating tasks in the same way is a rehabilitation strategy. It’s like learning main roads before you can learn shortcuts.
I learned during therapy that I am better working on my own. This was a hard concept to grasp for some who came to therapy with me because they would not be able to help me complete a task I was struggling on. But what they didn’t understand or even try to understand is that by them frequently interrupting me to give me directions on what to do next, it caused my brain to come to a halt to listen to them but then as I would transfer my attention back to the task I would have to start all over. I now have to take it slow and take it one step at a time at my own pace.
Recovery is a daunting process. There are no words to describe the constant war inside my brain every day. Having to fight for cognitive functions that are taken for granted by others has molded me into a much better person. I now see my struggle as a huge gift. It’s like the Trojan horse. At first I only saw my struggle for what it was but once I opened it and had to go to the depths of my soul to find the strength to come out of it, I saw it as something completely different. I was given the gift of compassion, empathy and understanding. No matter what anyone is dealing with, I will now most likely be able to relate to them and understand their struggle. I see this as my blessing in disguise.