Conversation stopper

This morning, like every morning I wake up to silence. We usually have a hug and then Jackie will make a “T” sign with her fingers and goes to put the kettle on. We sit in silence on our balcony drinking our first reviving cup of English breakfast tea and perhaps exchange a smile for the new day. Jackie no longer tries to make conversation or even a chance remark as it will be lost on me, and by the time I hook up my headphones and iphone the moment will have passed, so we sit contemplating, together, but apart.

A few months ago the first thing I would do when we sat drinking our morning cup of tea would be to fire up the iphone, don my headphones and say “Buenos dios”. That would be the signal to Jackie to know I was able to hear her and we could chit chat, small talk to start of the day.

As time has gone on my “hearing aid” has become less and less effective as my hearing diminishes and the distortion and tinnitus conspire to mask even the thin audio that my iphone pumps into my ears. So I’m apprehensive and reluctant to discover what new depths of isolation I may face today. Sometimes I’m surprised when I turn on the world to find that there has been a slight improvement. There’s clarity, and the distortion has disappeared, even the tinnitus has subsided and we can almost have a conversation.

Conversation is such an enriching part of a relationship, of friendships, although like John Lennon once wrote in his lyric to the song Julia, half of what I say is meaningless. But perhaps a lot of what passes for meaningless is part of the rich tapestry of life. We’re social beings by nature and gossip is one of those inconsequential bits of life that I yearn for, the quip, the witty aside, a passing remark that these days I miss. It’s delivered too fast, from out of nowhere, and often out of context. It throws me as I’m having to concentrate on the flow of an indistinct thin and tinny sound that constitutes a voice.

The days are empty of these moments between us, and so we involve ourselves in the day to day things to do in a wordless world, with a smile and a gesture but without words to plug the space between us.

Because I don’t yet have a proper hearing aid and have to rely on my iphone there are times when the battery has run out and it needs to be charged. A while back I could still cup my ears, if Jackie wanted to tell me something, and I would understand her, as long as she spoke into the ear that was working that day. These days even that strategy seems to be failing as the words break up, distort, and lead to a frustration for both of us.

It's impossible to predict whether or not I’ll be able to hear and understand especially when I could make out the words yesterday, why not today. But that seem to be the nature of Meniere’s, it’s an unpredictable lurch from comprehension to utter garble. Even an hour can make all the difference so the frustration that we both have to deal with is to say the least, trying, sometimes it can bring us close to tears.

Losing my religion

As a musician and singer for over 50 years playing bass in rock and blues bands as well as strumming an acoustic guitar to write songs and sometimes even going out and doing solo gigs it never occurred to me that I might go deaf. Over the years my hearing did deteriorate, but it didn’t stop me being able to function as a player and as a listener but that all changed as my Meniere’s progressed.

I had had the odd bouts of vertigo over a few years, and I had also had days when my hearing wasn’t functioning as it should but I put it down to blocked Eustation tubes, like when you have a bad cold and things go a bit dull and fuzzy. I suppose looking back I can recognize that I have had this condition for perhaps 10 years.

Up until a couple of years ago I was still doing gigs as a solo artist and although at times these were on bad hearing days I was still able to hold a tune and jam around with friends. My wife Jackie and I had bought a boat and were living the dream sailing in the Caribbean. I was teaching Jackie to play ukulele and we used to have fun practicing a few sea shanties to perform for our new found cruising friends.

Then one day on board our boat I picked up the ukulele to practice a couple of tunes and had found I was having difficulty tuning the thing up. I hadn’t noticed this before, in fact I seldom used an electronic tuner and did my tuning the old fashioned way, by ear. I resorted to the tuner which told me that it was now in tune and I began to strum a couple of basic chords, C, Am, F, and G.

Something very strange was occurring as the Chord of C and the chord of Am sounded exactly the same. Even F sounded a bit like C and G was no different. Oh there was a sort of subtle variation but it was a long way from this familiar sequence that I had played 10,000 times before. I tried fingering a simple scale which my ears recognized starting at low C and climbing to high C. I tried that chord change again from C to Am, then I tried an A major to Am. It all sounded the same, I could not tell the difference from one chord to another. And this was on a day when I thought my ears had cleared momentarily.

The bummer with Meniere’s is that you have good days and bad days, or sometimes good weeks and bad weeks, it seems to have no pattern to it. I could go to bed with good ears and wake up the next feeling like I was living with ear defenders on, it was that dramatic. The days when it was bad I just wouldn’t play at all, but when the fog lifted I would revel in the amnesty, but this particular day it seemed I had crossed a threshold with the condition that I was totally unprepared for.

Prior to this point I had noticed that listening to any sort of music was becoming difficult as there was something wrong with the bottom end, which had become a sort of blur that caused me to hear it as over ripe distortion, or a sort of blooming that masked out the rest of the tune. But now my ears were failing to recognize the subtle changes that make up melody. Music had become a no go area, nothing sounded right anymore  in fact it was just becoming a very uncomfortable noise.

This was how my life was going to be from now on, a life without music, it was unthinkable, Meniere’s had robbed me of a huge part of my life. I would try from time to time, when I thought I was having a slight respite from the fog but C Am, F & G just came out as discordant blur. That was perhaps 18 months ago and I was losing my religion..

I’ve done a good deal of investigation via the wonders of the internet looking for information about ears and how the work and how they fail but have found very little that describes this loss of harmonic decoding that our ears do without us even thinking about it. I found a Scotish professor who played piano that described exactly the same symptoms that I went through, and probably described it better than I have. It makes you aware of how amazingly complicated the process of hearing is and makes you wonder how on earth it works, when everything is normal, of course.

 There’s an eardrum that wobbles backwards and forwards that moves some miniscule bones that tap on an inner window, as they call it, that then moves some 30,000 hair cells that float in a fluid inside a shell like organ called the Choclea. This movement is then converted into electrical signals that race along an auditory nerve fibre which is connected to a particular part of the brain than makes sense of it and manifests itself as a particular sound. We can hear frequencies from very low, I’m not sure how low, to about 20,000 hertz which is a very high pitched squeak.

Now the thing is that when we listen to music it may contain all of these harmonics happening at the same moment, as in a symphony concert, say, and our ears capture all of this at the same instant, feed it to our brain which interprets it as music. It also turns this information into an emotionable response, happy, sad, elated, calming, it passeth beyond all understanding that’s all I can say.

Until you lose the ability to hear, to listen, then the sense of hearing is something we all take for granted, but just stop for a moment and contemplate the wonder of how that sense works, and then put on a set of ear defenders and walk through a week with them on.

Our hearing is dependent on us having a full set of those hair cells, and as we grow older we start to lose them. Loud noises will kill a few of them off at a time, and they are not renewable, they do not regenerate, and even without contracting Meniere’s most people will have trouble in later life. But Meniere’s seems to ransack the remaining ones we have and with a vengeance will lead you to a curious world where music and the whole auditory experience just doesn’t make sense anymore. 

Intro

I should have started this blog a few years ago, because I have had this condition now, I believe for perhaps 10 years. But 10 years ago I had no idea what Meniere’s was, in fact I wasn’t even aware that it existed, let alone that I had it. I first discovered that perhaps It was Menieres’ by googling the symptoms I was suffering from about three years ago. I had been having bouts of vertigo and also a fluctuation in my hearing for quite some time but had never linked the two things together.

Now almost three years after I stumbled across my possible affliction I am virtually deaf.

The three years has seen a steady decline, and I should have been under the care of ENT specialists who may have been able to stall its progress but due to my circumstances I wasn’t able to do that. The reason being that my wife, Jackie and I had bought a liveaboard sailboat, in 2013, and were about to take off on a big adventure exploring the Caribbean islands, a dream we had conjured up back in the cold and damp UK some ten years ago.

This adventure lasted for over three years during which I gradually lost my hearing, and became an armchair expert on Meniere’s.

I now know quite a lot about how the ears work, or don’t work. The outer ear, the middle ear, the inner ear, the choclea, and hair cells. The sack of fluid that the hair cells are bathed in composed of vital fluids that become messed up in Meniere’s and this leads to the death of these haircells.

You can’t grow new hair cells, once they’re gone they’re gone for good which I find Is strange because I don’t seem to have that problem with other hair cells in my body. In fact I seem to grow new ones by the week where they never were before. I’ve got hairs on my shoulder that I haven’t had in 69 years. My nose seems to think it should have a beard and my eyebrows seem to be trying to make up for my receding hairline. So what is it with haircells in my ears, and why do fish and chickens haircells renew themselves when humans don’t. It’s one of natures mysteries that the boffins have yet to unravel.