Until You Realize Your Brain Is Broken

       As I alluded to in my last post, I only know what an extremely severe traumatic brain injury feels like. Therefore, the information I share may not be applicable to all head traumas. However, the information I share in this post might sound controversial. It took a long time for my parents to believe that I truly did not understand what was happening rather than being contrary.

            For a long while, I could not comprehend that anything had happened to me. My brain had been damaged, but my mind literally could not grasp that very fact. Even though I was uncapable of doing things that I had always done, my perception was that they were still getting accomplished. For example, my voice was extremely monotone and when my speech therapist would tell me that I had to use voice inflections, I thought she was being insane. Because in my head, I was speaking the exact same way I always had.

            In occupational therapy, my therapist would try to get me to do simple addition problems. I legitimately thought that I was scrolling through the page at a rapid pace and I was extremely frustrated because I had just completed an AP Calculus class and now they were making me do addition! However in actuality, it took me about 10 minutes to get through a page and many of the answers were not even numbers – rather just dashes or dots.

           People had a hard time believing that I was not just being stubborn and belligerent. It seemed so obvious that I could not finish things, that my voice was so deadpan, etc. that there was no way I couldn’t see it! Yet somehow, my brain was not processing that there was a difference. My brain was so focused on physically healing that it could not supply my mind with adequate resources to fathom any sort of deficit.

I had no understanding of why I was trapped in the hospital for so long and I put all my efforts into getting out. To underscore this idea, I would have one sip of a 1600 calorie milkshake and think I had all 1600 calories. (Since eating a LOT of calories was a prerequisite to going home.)

            It took me a long number of months before I began to realize that things were taking a longer time and that things were a heck of a lot harder. It took a lot longer than that to understand that things would never be the same. I still struggle with all of it, but the final piece, radical acceptance, took the longest. “Radical acceptance is when you stop fighting reality, stop responding with impulsive or destructive behaviors when things aren't going the way you want them to, and let go of bitterness that may be keeping you trapped in a cycle of suffering.” It is NOT a joyful acceptance of the reality.

Work

I do a whole lot more and a lot less than most people all at the same time. I (thankfully) am no longer in school (at the moment). I am not working at a regular job. I am not married nor do I have any kids. I don't tend my sister's kids or work with my disabled sister much either. So how in the world can I claim to do more than most people!?
Oh let me tell you. To begin with, I am often times gone between the hours of 9-5 shuffling between doctors, therapies, and institute. When debate season is in, I'm also gone every weekend, all days long. But that's just the beginning. I'm recovering from damage to the most vital organ in our bodies. This is not something that will heal in a year or two nor even 5 or 10! This is a lifelong process. My neuropsychologist would be the first to tell you that my brain is constantly working on things we talk about all week long. So while I'm digesting how I behave, the interactions I create, and the effects it has on other people, I'm also trying to carry on tasks of a normal life. These "normal" tasks are not easy for me either. I am regularly managing pain, whether that be the direct result of the trauma, the weeks of lying in a hospital bed, or the lack of activity since. I don't know how to do a lot of physical things (like walk properly) anymore - hence why I'm in Physical Therapy.I struggle with simple things that no one in their 20s should have to deal with; things like not remembering how to do exercises, not knowing what I ate 2 hours ago, losing my train of thought in the middle of a sentence or even worse forgetting what I'm thinking about while I'm in the middle of thinking about it. I wonder who will care about me today, who I can talk to or spend time with. Every day I feel abandoned from a number of people. I have problems with sight, not just distance, but double vision, blurry vision, processing, etc - hence the vision therapy. My thoughts run rampant and extremely negative, especially when it's time to sleep. So I never get any sleep, and as we all know, sleep is so important to functioning properly. Especially with all this negative self-talk my muscles get tense and my spine gets all out of whack. Hence the need for chiropractic therapy and for very specialized massage therapy. Oh and this is not all. I have many other doctors or counselors that I see on a regular basis, vocational rehab, psychiatrist, therapist/counselor, primary care doctor, etc. And my appointments do not end there, I also have housing appointments, and employee appointments with a support coordinator, a behaviorist, etc. We also think that I may need some occupational therapy (again) and I really need to get a neurologist.
But despite all of that, I think the hardest part of my "job" as a recovering brain is the greif. I didn't get to walk away when my friends saw that I was not the person they knew. I didn't get to turn around and give up when life got hard. I didn't get to say "my schedule's too full" or "it's not reasonable to treat you anymore." I don't have the luxury of not knowing who I was before the accident. I don't get to say no to the annoying person that won't leave me alone. I don't get to be the person I feel inside. I don't have the capabilities to show what I have inside of my broken head and bruised body. I didn't ever have the chance to grieve, nor do I think I ever will. I am always trying to do, act and be better. While I am mourning in the back of my mind, I have to fight this battle. I don't have the choice but to live with this TBI. I don't have the power to change my circumstances, all I can do is change myself, but changing myself with a broken brain is harder than you will ever know. I cling to the past because it is the only thing real that I can recall.
So yeah, I work pretty dang hard. Do I do any of the "typical" things that you would think of? No. But I think I have a full time job nonetheless. Bereavement is a job in and of itself when it is someone as traumatizing as yourself.