J. Alexander (johnmill79) wrote,
J. Alexander

Lj Idol: Say What?

I've been squeezing my brain all week for this, what to write! what to write! When it suddenly came to me, this is pretty much the story of my life, well ok one of them anyway. Is it just me, or do I manage to say that every week. Anyway, I've often misheard things or thought that something was said when it wasn't. So, I'm going to take a little license with this topic and talk about my progressive hearing loss and how it has effected me.

I think that I've always been at a slight deficit for hearing. It's funny though, when you're young, your opinions don't really tend to matter much. People would often attempt to talk to me over the roaring wind on a Sunday as we sped down the highway after church. I think my brain was faster then, because I could pick up bits and pieces of a conversation and somehow assemble enough of it to make sense when I chose to contribute.

I would often sit in the back of the class, practically unable to understand what the teacher was saying. I knew I didn't have to worry about that too much either, because I had someone who would transcribe my notes for me, so that I could read them later. Much like I felt about my blindness in those early years, I thought all of the children were struggling in this way.

It didn't start to occur that something might be seriously wrong until about 1994, when I would have been 15 years of age and people actually became interested in what I had to say. Someone would ask me a question, and I would start to answer and realize in the middle of the sentence that my response was totally off from what they said. The exchange would sound a little something like this: "So John, you hungry?" "No, I was just walking..., uh oh no I ate like ten minutes ago." This became more frequent, and over time my mom started retorting with "Boy, you need to go get your hearing checked!"

As it turns out, she was right. You see, I have a genetic disorder called Norrie Diseasewhich is the cause of my blindness and can also result in progressive hearing loss in some cases. It generally effects the males of the family, my cousin and I both suffer yet his case is not as severe as mine. It's weird how that works.

So, things just kept getting worse until 2000, when I tried out my first hearing aid. I was at university by then, and the costs of not being able to correctly discern what was said were becoming much greater. I had tried everything, from giving the professor a tape recorder to speak into, (these usually had entirely too much hiss), to working one on one outside of the classroom (which didn't help me to participate in in-class discussion, making true understanding of the material much more difficult).

Because I initially had only one aid at that time, I was usually unable to wear it as it completely threw off my balance. Attempts at crossing the street often ended in my standing stock-still until someone came to get me after having turned around and around in circles and given up.

I also had a difficult time accepting them socially, if truth be told. The first one I was given met a very bad end under my shoe. As I was trying to transfer it the aid slipped from my hand and, in my haste to recover it, was crushed into little bits of plastic and wire. I still don't know what happened to the second one they let me have. I know I had taken it out while at a meeting, because I was getting fed up with all the attention it drew. Somewhere between my ear and the pouch, it just completely disappeared.

I didn't try again until January 26, 2006with the help of the Charlotte Speech and Hearing Center, a United Way agency. Fortunately, I was given two aids this time, and I am happy to report that it was and still is a success. As I have become more adjusted to them lately I am tending to miss much less of what is said, especially those things that are directed at me. Yes I still do have the ocasional minor setbackbut there is no question that the overall quality of my life has improved steadily with them, as opposed to without.
Tags: hearing/lack of, lj idol, lji topics, medical, writing

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