Deafness

I have been sharing my experience and perception about chronic illness and chronic pain.
I have not touched on the sounds of silence. I want to share with you what it is like becoming and being deaf after years of hearing.

First, let me define my deafness.

Without hearing aids I hear nothing but abstract noises that must be of certain pitches. I can be standing next to a phone I can not hear it ring so this is one pitch I can not hear. I can not hear thunder. I can hear certain loud crashes but other than that all I hear are 4 octaves of Tinnitus, which are high pitch loud I mean loud sirens that scream constantly in my head 24/7. Then believe it or not I have a banjo always strumming the exact same cords over and over and over in my right ear. I thought I was crazy as far as the banjo but the Neuro-Otiologist says it is normal. He said it was no different than hitting your knee-cap and it having a constant funny feeling in it. He said it would go away but it hasn’t. All day every day I get to hear Deliverance in my head. So I consider this pretty deaf. Under the state disability I am considered deaf. On the official breakdown of hearing loss I am one step from complete deafness which is where you can not gain any benefits from hearing aids. You are “stone deaf.” I am one step up from stone deaf under the governments break down of definitions my hearing tests put me in what is called “profound hearing loss.”

As far as hearing aids, I must wear the most technically advanced, most powerful hearing aids. When they are of no benefit for me, there are no other hearing aids for me to move up to. I am done and move to the “stone deaf” definition.

Hearing aids of today “digital” have allowed me to hear some pitches of sound. If I look at you, I can read your lips. Now this is catchy, I can read some of your words that you form with your mouth ONLY IF I am familiar with the subject being talked to me about and only if I am being addressed by one person and most definitely ONLY with my hearing aids in.

One of the greatest losses and hurdles that I have yet to overcome or even figure out is how to get my brain to watch and read lips, then comprehend those words at the same time. Then process all of this into making sense called communication. You would not believe what we take for granted as hearing people that goes on rapidly in your head at every given moment. But I sure lost it when I went deaf. There are three distinct and important functions that we as hearing people do and are going on at a subconscious level all at the same time. I am now trying to do all of these functions on a conscious level step by step all at the same time and keep up with all the other parts of an interaction going on at the same time. What is happening around me, the other people who may or may not be involved yet throw in a comment, someone asking me something while I am in this other conversation well it is just a mess. If you really want to get the shock of it all, sometime wear ear plugs to the store. I had my family do this only they wore ear plugs for a 24 hour period just to get a glimpse of what I am trying to adjust to, get frightened of, overwhelmed by and the many many losses that make losing your hearing much more than losing the ability to hear sounds.

Again I digress, so here I am trying to watch your mouth which you do not annunciate your words very well, funny I had never noticed how badly we talk. We are very lazy in our speech my friends. I am intently watching your mouth movements to make out the “main” words, this takes my total concentration which is not good. I am not able to see your face, your animations, anything going on around us. The whole place could be on fire and I would not know it if you did not say it with your mouth movements that is how much concentration it takes for me to get what you are trying to convey to me.

Here I am using all my brain power to focus on your words, yet I am also supposed to be able to process your words into making something meaningful out of them, which is what you are trying to convey to me. The third process that is going on at this exact same time is taking what you are saying and interpreting it into what we call “communicating.” This is when everything that is being said is formulated into making words take on a logical meaning in your mind by comprehending, understanding, associating and thinking about what you are saying triggering what kind of response this elicits in me so that I can then answer you. All this goes on naturally when we can hear. Our brain does all of this automatically. Well now mine does not.

I never knew so much went on in our minds, with all of our senses and many other variables that come into play in a simple dialog forget the debating team for me J.

I first had to figure all this out and that it was taking place, how it takes place, as yet I haven’t figured out how to train my brain to all these functions consciously. I do know now why people equate “deafness with being dumb.” Believe me I have heard this more than once.

This is very frustrating and just ruins TV or the movies. I never get to see the movie, what anyone looks like, what they are doing, nothing. I am so busy reading the words and trying to figure out all that I have just explained I haven’t got time or enough eyes to read the script and watch the movie at the same time. By the time I finish reading the closed caption everything has moved on. That is also a problem. I did not take Evelyn Wood’s speed reading and in movies or TV you can’t say would you please slow down so I can keep up. I haven’t seen a movie since I went deaf a year and a half ago, nor have I enjoyed a TV program. I never get to see it.

In every day life this has really taken on a major change in my life. I do not like to converse outside my inner circle. It is quite embarrassing at this point in my journey with deafness. I can see how I look and act.

As I have described I am so busy trying to formulate your words with my mind that I have barely have a clue as to the content trying to be conveyed. So I believe I have that “doe staring into the headlight look on my face” and it just makes me feel stupid. I am a highly intelligent woman yet when I now try to verbally communicate, I truly feel I come across like I am retarded. Again being in my profession I can pick up on people’s body language with me, how they start to change how they talk to me and then treat me.
To me the world has gotten a lot colder, complacent and comfortably numb in how we treat and react to each other. I am old enough to remember a different time in this country.

Deafness has given me new sight and a whole new ability to hear what I never paid attention to before I was deaf. I learn something new every day being deaf all taught by my interactions with people either through direct or indirect interaction.

Since I never noticed to be aware of these new awakenings I don’t know if I would not be the same way if I still had the ability to hear. I hope I would not be but unless I get my hearing back I will never know the answer to that.

I do know people assume way too much about me at least and my deafness. They believe if they talk louder I will hear them. They also believe if they talk slow I will hear them.

This is not true for me. It is all about annunciation and using your whole mouth to speak your words clearly. My Otiologist talks at a normal rate of speed but he looks at me. He uses his lips and whole mouth to speak each word distinctly, which really is how we should speak to anyone. I have really noticed how lax we are in how we talk. People mumble, slur their words, put their hands over their mouths, speak going up and down with the volume of their voice. They talk so fast that they do not pronounce many of their words. It is like they kind of say part of the word but move on before they finish it. Oh yeah the worst is people barely move their mouths or lips in forming their words.

Next time you are talking to someone be aware of how you speak I think you will surprise yourself. On the superficial side, believe me it is kind of sexy to watch someone’s mouth and lips move if they use them to their full extent. There was a sex symbol maybe Marilyn Monroe who used this to her advantage. From one who is becoming an expert on your mouth, lips and teeth know how important they are to make them as inviting as possible and to talk as clearly and distinctly as possible. I am starting to do it for the looks of it because I like it J.

I have definitely noticed that once I start to converse with someone in any situation but the worst as I said before is any interaction with the health care system, that there is a definite lack of respect for me. I am still trying to figure out if this is because I am still in the victim role as a deaf person or if it is what I call “profiling” that people do unconsciously when they are dealing with disabled/deaf people. I am treated like I am a child, talk down to as if I were a child and ignored as if I am invisible. I know this is about my deafness because I was never treated this way when I was well and could hear. If you knew me you would know I could not be ignored nor would anyone attempt to talk down to me much less treat me like less than I deserve to be treated.

I have much work to still do on this, analyzing, changing Mary-Anne and how she presents herself and learning how to get what I want and need as an equal.

These are just some of the insights into being deaf. I don’t want to write a book which I could on all that has touched me, taught me, changed me and handicapped me by just going deaf. Then you add being disabled and invisibly disabled on top of that I have a novel.

It is a very rough road that each day brings new challenges and at this point pushes me back more and more into the shadows of life.
As I stated on the front page of my Blog I in no way resemble the Mary-Anne I knew before I got ill and went deaf.
It saddens me and I still have not found peace with all that has happened, all the losses but most of all the wearing down and loss of the beauty that once was Mary-Anne.

I hope I get to live to finish re-creating Mary-Anne and helping her find that fiery, energetic, life force driven woman full of life, afraid of nothing. A woman full of determination, unshakable belief that nothing could stop her and most of all a woman who believed that time was all that stood in the way of her and whatever she put her energy into getting.

I have shared only some of what deafness has shown me, guided me to and hopefully will help you become aware of just how losing one sense, hearing can take away much more than your ability to hear. I am going to spend some time on my Blog going over what I hope you will find very enlightening about what you can develop within yourself about yourself, without having to experience the great loss of becoming deaf. Maybe after reading this you will become a little more tolerant and less reactive when someone does not do, say or act according to your definition to normalacy. I hope you never have to take time out of your life to learn how to live in a hearing world that expects you to hear and penalizes you with constant consequences from society to individuals who take your not acting “normal” quite personally. Maybe a little tolerance could go a long way in our pressured society. Try it on for just one day and then tell me what you experienced and how you felt about yourself that day, a day of tolerance.

I wonder what would be different all over this messed up, killing, hating, wars, political “rights” and all roads lead to money for the few and heartache for the masses if we all practiced “Tolerance.”

Good night and Good morning my fellow travelers,

Mary-Anne

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