I wonder everyday of my life if I will ever overcome my disability? Will others ever understand that I have a disability? I have a traumatic brain injury and it is an extreme nightmare just to function through a “normal” day for me. Something that is hard for me talk about and something that I do not share with many people outside of my “inner circle.”
My first injury to the brain happened December 2014 (brain surgery), second (brain surgery) two weeks later same area of the brain, third surgery same area of brain three days later, fourth surgery (same area of the brain) six weeks later, and fifth surgery two weeks later (same area of the brain). All of these surgeries caused frontal lobe damage to my brain. These surgeries changed my life (not for the good either.) I have never been the same, I have lost a sense of who I was and who I wanted to be, I have never been the same person since the first surgery. Before I had my first surgery I was working on my College Degree and was on goal to graduate (in few months after my after my first surgery. I had goals for my future and those goals were shot to Hell. I cannot stay on task to study for a class if I wanted to go back to school or even hold down a “remedial” job. I cannot stay on task of the simplest thing, I have to be constantly reminded of what I am to be doing during the day, I have post-it notes of what my task are and I cross them off “if” I get them done. I rarely get them done because I rarely get to a task on that list done because I am often onto another task that I “see” I think of and never even think of that list that I made earlier.
I have lost the majority of my friends and a lot of extended family does not talk to me in because they do not understand at all what it is like for me living with a TBI and even if I try hard to explain to them; “Though I look normal on the outside I am struggling on the inside. I am sorry that I honestly cannot control what comes out of my mouth I have no filter, I have anger outburst for no reason, I am forgetful, I cannot stand to be around HUGE crowds of people I can’t function it is a ‘brain’ overload for me and it causes me to panic. I talk and talk and talk about non-sense stuff and it often does not even make sense to “you” but to me it all makes sense. This is all part of this brain injury crap I cannot control, these things they are all part of having a TBI. They are NOT excuses. I do not do things to you/them/others intentionally or they hear that I “lashed out” from another person and then they come to their own conclusions but again no one wants to listen to me tell them why things happen. Some will call me a liar for trying to defend myself and tell them that I am not making this stuff up and I am not making excuses. I “really” am doing the very best I can and I “REALLY” DO want to be a better and I “REALLY” want to hold down a job and finish school, BUT it is not in the cards for me no matter how hard I try. I am trying hard to make small strides everyday. I accomplish little task. Those little tasks are a minute to others, but to me they are HUGE accomplishments and something that I have defeated.
People think that because they cannot see an “injury” on me that it does not exist. I know that my husband can see that I have “injuries” that are unseen. He can see that I changed and he can see that there are “deficits” in me and that I struggle to function most days. My husband also sees/knows that I am “hard to handle” and he has the patience to keep forgiving me a million times over for the zillions of times I lose my temper, I forget what I have said, I forget what he said or what others have said to me. He has patience to love me even though I am hard to love at times because he understands that I am locked in a secret Hell. I am locked in a mind of Hell that I never asked for and that I would do anything to change. I struggle in silence everyday because I am misunderstood or I feel others do not understand what I am struggling with. My husband knows without him in my life I would not be able to function, he is my rock and my BIGGEST supporter, cheerleader, the kindest, most forgiving man I know.
What I want others to know about me is that I am still me but I am a different me. I struggle to be patient with others, I burst out in anger often for no reason because I am frustrated and I cannot get my words together to express how I really feel. I am easily irritated when others interrupt me because it often takes me a longtime to find words and when you/they interrupt me I forget what I was going to say, which in return makes me impulsive with words or my actions. I am impulsive and I often do not realize how much I hurt others until it’s too late. I talk obsessively (more than I ever have) and often it make no sense to you, But at the end of it all it make perfect sense to me. I do not do things intentionally to hurt others and I love deeply. I am offended easily, VERY EASILY. I want people closest to me understand me and the HELL that I live with each and everyday and I wish that the ones that I love(d) most could truly understand I am not lazy and I am not a Bitch or mean, I am “damaged”.
I just want to be understood and I want you to know that I do the very best I can everyday… Instead of knocking me down, can you please help me. Help me be the best I can by encouraging me and being there for me. Listening to me and just being there for me. This journey has already been one of the hardest in my life already I just I just need support and encouragement NOT discouragement. I am damaged and I just want to be understood and not told to “Stop making excuses, You are just hard to love, You are too needy (as a friend), I can’t fix you”. Support and Uplift me, Love me, I KNOW I am hard to love/like/have around BUT try…
I have an invisible disability, with an ability to be able, to be the very best person I can….