Thursday, February 25, 2016

Aphasia - My Arch Nemisis



Aphasia is a communication disorder that results from damage to the parts of the brain that contain language (typically in the left half of the brain). I fractured my skull in two places, the left temporal lobe and the base of my skull.  I have Aphasia and it sucks.  Lots of people with TBI have it.

I can't remember words but it's not once in a while like when you have a word on the tip of your tongue and you can't get it out - for me it is constant.  It makes it really hard for me to have a conversation with people unless I take medication that helps me focus and lifts the brain smog!  I call it brain smog because it's more of a pollution in my brain from injury rather than "brain fog" because there is nothing natural about it.  Unfortunately, I can't take the medication everyday because if I do, I will develop a tolerance to it and it won't work.

 This is an off week for me.  I can't take my brain smog medication this week.  I don't know what I was thinking but I scheduled two meetings for today.  Normally, I try to avoid all social situations on off weeks, but I had to go meet with an ABA consulting company to start the long and arduous process of getting my health insurance company to approve behavioral therapy for my autistic son.  I had a hard time filling out the numerous forms and I couldn't concentrate.

After my meeting with the ABA company, I met with a nutritionist who specializes in children with disabilities.  It was a nightmare.  I couldn't remember words, I couldn't get my thoughts out correctly, and I just could not think.  I wanted to explain to her why I was having such a hard time talking.  I ended up telling her to go to my website when I left so hopefully she will put 2 and 2 together.

I have seriously thought of making cards - like business cards - that I hand to people when I first meet them that tells them what aphasia is and that I have it. Then maybe they won't think I'm stoned or just an idiot.

I tend to tell people who I just meet that I have a brain injury as soon as I possibly can.  I often see them staring at my partially paralyzed face with this look of wonder.  I can see the thoughts running through their minds, "I wonder what happened to her," "I wonder if she had a stroke."  It's like they have a virtual thought cloud above their heads.  I want to end their wonderment.  I also want them to be slightly compassionate towards me too because I feel ugly, I feel deformed and I feel totally self conscious.

I also prefer to write rather than speak, which is why I choose to communicate via text or email more so than talking on the phone.  For some reason speaking on the phone is harder for me than speaking to someone in person.  I just can't concentrate, my mind wanders.  I can't speak on the phone while I am doing something like cooking dinner.  I want people to know that they shouldn't take it personally if I don't call them.   It's not you, it's me.

Writing is somewhat easier because if I don't know the word I am trying to remember, I can just stop and take a break or search the Internet by doing a Google search on, "what's the word for ......."  Believe it or not, Google usually comes through for me.  But that doesn't mean I don't have difficulty writing.  On off weeks I simply cannot write my book.  It just doesn't make sense and I get angry and frustrated and that makes it worse.

I am controlled by my TBI.  No matter how much I fight it and try not to let it control me, I always lose.  So, I stopped fighting it, and now I am trying to work with it.  I'm trying to find some harmony with it, but it isn't easy.  It is just the reality of life with a TBI.

No comments:

Post a Comment

Search This Blog