Adapting to Sound after Cochlear: a really freaking long post

So I haven’t written about my cochlear in a while.

Let me tell you this:

I am deaf. I wear a cochlear on the right side of my head.

When I was in first grade, I was given a hearing test. I was told that they don’t give this test to kids: I was special. I was going to be one of the first kids in the world to get this hearing test. It would map out the breadth of what I could hear.

It was a really long hearing test. So long, about half way through, they sent me out with my mom to get a watch so I could tell what time it was. And some Burger King.

Anyways, at the end of it, we’re sent home. I have no idea what the results of that test were, but I assume they said: “Well, he’s really deaf.”

That evening, I had ringing in my ears for the first time. I couldn’t sleep. I cried to my mom and dad to make it stop. They didn’t know how to. So I didn’t sleep. Not for 3 days straight.

Now, I’m 46 years old. That was 40 years ago… After 40 years or near continuous tinnitus, I can tell you this: I have no real memory of what silence is.

Silence is just a word in the dictionary with a meaning that I have no conceivable physical or mental way to understand. It’s like theoretical physics: the math says it’s possible, but it’s so far away, who the hell knows? It’s a concept that’s just a defined in the dictionary. It has no meaning nor truth to me. Silence is mythical. As a deaf man, that’s odd to “normal” people. That I really have no realistic concept of silence. I mean, I’m DEAF right? Shouldn’t things be MORE silent?

Well… no. My ears have rang for 40 years…. and I’m sane. I wore hearing aids for 37 years of my life. I went from mid powered hearing aids to “even whispers are louder than a jet engine”. How do I deal with it?

I think by the third night of no sleep, is the first time I started making music in my head out of tinnitus. I had to think about it, I had to repurpose this… sound into something that wasn’t making my life a living hell. So I started making music out of it. LIke recorder music (plastic flute). As I grew older, the compositions grew more complex as my tinnitus grew worse and worse.

When I was 38, the tinnitus became unbearable. Like an amplifier turned up the 20,000 all the time. Every single piece of sound made me sick to my stomach, and I lost my balance. I threw up. I took my left hearing aid off and went to just my right hearing aid… until 2012. In 2012, I broke my leg severely. I was given an enormous amount of pain meds, which destroyed all residual “usable” hearing.

The effect was described to be as a feedback/logic loop: my brain knew there should be more sound, so it was basically demanding MORE from my ears than they were physically capable of. It tried to fill in the blanks by making everything LOUDER… TOO LOUD IN FACT. It was terrifically horrible, and resulted in my NOT wearing hearing aids at all for almost a year. In the end, I was told to try a cochlear implant.

There was no guarantee it would work. Maybe it would. Maybe it wouldn’t. 50/50 change… but to paraphrase the Shawshank Redemption: get busy hearing, or get busy being deaf. The precipice was here, and I had to take the blue pill or the red pill (to really mix my movie metaphors up there…) I chose the Cochlear.

It’s the best freaking decision I’ve made. The process was painful, and took awhile. The surgery was “out patient” (except I had a bad reaction to the anesthesia so it ended up over night).

So, did the cochlear END tinnitus?

Nope. But I will say it’s lesser than it’s been for a long time. Why? Because the tinnitus is the result of my “wetware” being damaged. Inner Ear, stapes, hammer, even the actual cochlear… they’re all for shit. It’s funny: I have 2 ears, and neither of them hear. YET… I understand human speech right now better than I have at any point in my memory.

I still have all those albums of tinnitus music in my head. They’re freaking awesome. Some even have lyrics. In fact, most do. There’s a section on this page for “poetry” and on some level, *ALL* of those poems are really song lyrics with their own sound tracks. In most cases, the sound track for them differs, but for a few… they’re like diamond stamped notes in my memory, that I can replay, and even sing along to… outloud, or just in my head. It’s music I’ll NEVER be able to share, because I haven’t the faintest how the hell to get it out of my head. Do I hum and scat it and hope someone can figure out the intensity or pitch I’m really trying to relate this in?

This is my own person artwork and expression, that’s trapped in my head, and will never ever get out. It’s mine, and mine alone. I can tell you about it, but there’s no technologically feasible way to get it out of my head. I even wrote a short story about it once (lost the story to a bad hard drive…) but it basically involved a young man who through some prototypical mix of science and fantasy accident becomes capable of broadcasting to radio from his head. The young man is just like me, and he broadcasts the music from his head to the radio, and it suddenly becomes popular. Some Mili Vanilli jackhole claims the music is his… but the guy is just a “imitator”.

So that isn’t even the point I was writing about, but the whole POINT of that little fork is that… you can control tinnitus. It doesn’t have to drive you nuts. THe fact is, this defence mechanism is autonomous at this point. I don’t think about it actively now. My mind just DOES this. It detects the sounds, and then modulates them into something palatable.

Which is the real point of this long, meandering post. Hell, if you read this far… let me know 🙂

When that cochlear was installed, I had to relearn how to hear: AGAIN. And that’s the key here: AGAIN.

Hearing aids don’t last forever. About 3 years when you’re young, then maybe 5 years after 14 or 15 years old… then maybe 7 years between 18 and 35. Every time you get a new pair of hearing aids… the whole world sounds DIFFERENT. You have to relearn how to hear the world. Every 3, 5 or 7 years. There’s just no way around it.

I understand it was the same sound, but the sensory input of it was altered sufficiently. After 3 or 5 years, all my family and friends would sound different, and I’d have to relearn what they sound like. And pick up nuances in their voices that changed just because my hearing aids changed. I realized I listened to a world in which while every one around me spoke English, they all had their own accent that I had to decipher into english that I understood.

When I got my cochlear, it was a huge systemic shock. NOTHING. I MEAN NOTHING. Sounded normal. A turn signal sounded like a siren. I was hearing the cooling fan in a freaking computer, for God sakes! A no one’s voice sounded the same. They were clearer, alternately tinnier (at the start) and then deeper (after 10 months). My own voice seemed to be… disembodied, and not mine. I would actively think to say words, and the words came out, but it was like an out of body sensation in which somehow I was broadcasting my voice into a different set of vocal cords than my own (yet were strangely inside my throat).

I had to learn to hear again in a bad way. For a period of about 16 months, it involved tweaking the cochlear every few weeks, then every month, then every 2 months until we got it right. And then when we got it right, the real art of learning sound again started.

I used a Garmin GPS daily as a training method. I would drive around on my daily business, and just program in a destination at all time. The GPS would speak, and I would have a listing of what was being said. My goal was to navigate listening to the VOICES and not by looking at it. That took a long time.

At first, the GPS would just babble. It babbled in a way you know is human speech, but in reality it was just verbal vomit to me. Just spilled vowel and consonant sounds. Then I could start hearing pieces… mostly numbers… “Terfack on 696 vlowd buh heavyadd fit marge to m5 south”, as an example… it started to get sharper, and sometimes seemed funny to me, like once I heard the GPS advise mme to “burn weft unto fartington toad”.

Another way I trained myself is I would sit in my la-z-boy at home with the TV on, and lean back and NOT look at the screen. Just kind of drift off and concentrate on the sound. To see how much I can understand without seeing the captions, and without seeing peoples lips (because I’m a trained lip reader). I started to get better at this… I started to reach the point I’m at now.

Did I stop because I got better? No. I still use the GPS this way. I still do this with the TV… and this is where the kicker finally comes into being….

About 2 months ago, I was leaning back and listening to the TV when I had an epiphany. I realized that all along… all I was doing was developing a translation matrix for sounds. This might be the very definition of language and communication, but remember… millions of different accents, like a half billion levels of hillbilly twang and bostonian hiccups and texan drawl…

When anyone speaks… I don’t hear the English language. Instead, I hear a near approximation of the English language.  I still hear “burn weft unto fartington toad”, but that automatic translation matrix is like a memory resident program running in my head… it’s a crontab launched daemon that doesn’t interfere with anything else. That’s so closely intertwined with the operating system of me… that it took an epiphany for me to notice it. Like an anti virus scanner than finally noted the strange program which runs resident, but without any awareness of the greater ego that is ME…. (except now, minimal awareness 😉

If I sit back…. calm… relaxed… drifting off… but still conscious… I might recognize it… that weird, english but not english language with a trillion variations… that my brain just automatically translates in transparent action.

The human brain is a brilliant, amazing thing. It’s an engineering feat beyond any human being. This is my story, but believe you me: I don’t doubt we all have this ability. So if you’re losing your hearing and stumbled upon this blog posts… or you’re family or friends  who read this… I’m happy to talk more about this if it interests you.

Thanks for reading this if you did.

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