Being Locked Inside of Yourself

 I type with one finger. I grew up taking keyboard classes. I would play typing games for fun. The days of typing with two hands and 10 fingers are long gone. The inability to communicate is by far (for me) the worse part of my adventure. I think “my journey” is corny. I didn’t understand why it was such a big deal for a deaf person to get a cochlear implant but now I do. Hearing people just don’t understand what a deaf person does. There’s no way too. It must be wild to only communicate with other deaf people. I could imagine all day long but when it comes down to it, I just don’t know. I’m not deaf and I really struggle with communication. It’s extremely frustrating because I find that other people that I talk to don’t want to be rude by saying “what?” to me but I need to know what wasn’t clearly said. Knowing allows me to know my tendencies. It’s not productive to the person or me if they just pretend to understand me. Speaking takes so much effort for me. When I speak it’s because I made the conscious decision to do so. It’s really a blow when somebody just acts like they understand.

Really think about speaking. The tongue needs to be in the correct place in order to make audible sounds. I have ataxia and it makes it very difficult to keep my tongue steady. The tongue is a muscle and ataxia makes muscles shake or dance. It’s annoying. Ataxia is the gift that keeps on giving. I can’t feel it or anything so I don’t know when it’s responsible for a lack of comprehension.

Since my tumor removal, I speak in a monotone voice. I can no longer modulate my voice and my breathing is different. I can’t even tell you the amount of times people just pretended to understand me. There was this one time that a random receptionist in a waxing center didn’t understand what I was saying and she just acted like she understood. She obviously understood most of what I was saying because she almost did what I asked. I’m almost forty and this young woman made me feel embarrassed to speak. Difference is not widely discussed or accepted.

I’ve literally had to tell all my friends to just have me repeat myself. I would rather repeat myself than have someone pretend to understand. A lot of speech comprehension comes from watching the listener’s face and from there I can tell if whoever I’m talking to gets what I’m saying or not. Most of my friends have young kids and it’s very common to not understand what a kid is saying. When kids are learning to speak they don’t always make sense. In other words, my friends are very good at pretending comprehension so I have developed a habit of imagining potential reactions and responses to what I’m saying and if a reaction doesn’t match a potential response, I question if I’m being understood. It’s a strategy. I’m more right about potential reactions than I am wrong about it. I had a big brain tumor surgically removed from my cerebellum and because of that I have speech issues. It is what it is.