A general description of a traumatic brain injury is an insult to the brain resulting in cognitive, physical or emotional impairment. While this description is accurate, it does not give you an understanding of the medicine or person related to the brain injury.
I had a closed head injury with a focal point at the left basal ganglia. There was damage to the brain stem and I required a ventilator for respiratory failure. This will give you no understanding of a brain injury, because as I said earlier every brain injury is different.
It’s called a brain injury, but the damage is to the central nervous system and the nerves spread throughout the body. It can affect anything, our ability to think, walk, speak or breath. It may become better or worse as we age, depending on our efforts to improve.
Having a traumatic brain injury is like going to outer space, you won’t know what it’s like until it happens, or unless you’ve had a stroke.
Just as brain injuries are unique, so are people. I can only offer insight to myself.
After my brain injury, while in the hospital recovering, I remember thinking I didn’t want to be disabled. I didn’t think people who were disabled were respected as they should be in our society. I wanted respect, I didn’t want to be looked down on or taken advantage of because I have a brain injury.
I found I felt inferior to other people and being alone was a safe quiet place while I got better. It seems as if I fell into my trap of thinking that disabled people were not respected.
Being disrespected and thought little of is still in the back of my mind, but being around people when I go to the gym or volunteer has helped. I find that people will accept you and I don’t need to share myself.
I don’t share my story since I have no memory of the accident, not because my communication skills are poor or because I feel inferior since my brain injury. Also, I choose not to share my story since I believe those who haven’t had a TBI wouldn’t understand. I hate explaining myself, I feel like I’m justifying myself for my inadequacies brought about by my brain injury, besides no one wants to talk about their negative experiences.
An article called “Lost & Found: What Brain Injury Survivors Want You to Know” shares the basic issues TBI survivors deal with. It is written by Barbara J. Webster, Lash & Associates. As a TBI survivor, it seems like common sense information that everyone should know.
I would like to be understood, but I don’t know if there is a way for the TBI survivor to inform other people about their injury with ease or for people to inquire without being intrusive. What I can do is relate the issues that I deal with and I assume other TBI survivors deal with similar issues.
What I want people to understand is the continuous effort needed to maintain my health. I’m always questioning if I have done enough to be healthy, and what more could I do, but maybe that’s just me.
I want people to know that everything takes more concentration from before the injury, yes everything. From walking to eating, from cleaning to writing this post. Some things will become better, small improvements will come very slowly after years of repetition.
I want people to know that most of my attempts of reaching a goal are not fulfilled, this leads to poor self-esteem. My ambitions are greater then my abilities.
I want people to understand that everything depletes my concentration and adds to my daily fatigue. This includes the morning routine, riding the bus and preparing meals.
I want people to understand that I can quickly loose my temper when I’m tired and have no concentration to retain it. I’ve learned to avoid conflicts by walking away and finding a quiet place to rest. Similar to loosing my temper, I easily become sad and my eyes water. My emotions have become more extreme since my injury.
I want people to know that crowds are bothersome because too much activity takes place and I can’t pay attention to all of it, I become insecure and self defensive.
My point is that a traumatic brain injury is not an inconvenience that will pass in a few months or years. The injury is life altering, requiring the survivor to endure daily obstacles the remainder of their life.