A Journey In Sound

I read an advert recently with the words “Musicians have been silenced for 12 months. We *will* enjoy their music together again” in the headline. It stopped me dead in my tracks.

With the pandemic, the loss of live events, the dearth of suitable online experiences and the difficulty in making them work, it has been a challenging year.

I cannot imagine how difficult it must be for the artists we know and love. I can’t imagine how difficult it is to be unable to do what makes you, you, through no fault of your own, to be unable to do the thing that gives you life, that brings in some kind of income.  

But that’s not what made me stop when I saw the advert. 

What made me stop was the thought that I may never be able to enjoy music or a gig again, not properly, not in the way I want to, not easily at any rate. And that leads me to a story that started many moons ago.  

I first discovered the word cholesteatoma when I was a kid. It shouldn’t come as a surprise in a world of laden schoolbags, BMX bikes and playground squabbles I had never heard of a cholesteatoma before. My memory of that time was of months of pain, discomfort, and every medical specialist my unrelenting GP could foist me upon; brain specialists, bone specialists, dentists, opticians, more dentists, the ear bloke, the second ear bloke.

There were many doctors and many specialists.

I saw them all, but my GP was convinced the issue was my ear even though the ear Doctors said it wasn’t.  He eventually got me to the specialists specialist. The Mr.  I was in a ward having my head shaved and awaiting surgery within an hour of my first appointment with Mr Gordon Dill Long Smyth and he barely told us what was going on.

It was a little alarming.

A cholesteatoma is an abnormal growth that forms deep inside the ear. Medical publications will tell you that if a cholesteatoma is left untreated it can damage the “delicate structures inside your ear”, structures that are essential for hearing, balance and a host of other functions.

What they don’t say particularly clearly is that they can eat through bone, end up inside your skull or go the other way and crack open your brain cavity, causing worse damage than hearing loss. If death is considered more damaging than hearing loss. 

Obviously. 

Your average cholesteatoma has a taste for nerves, those that allow you to taste food and those that allow you to smile at weary strangers. Often, if the cholesteatoma doesn’t get to your nerves first, the ringing, tinnitus, pressure, constant popping and general botheration of it all will have a good run at them, and that’s only if the surgeon doesn’t get there first.

Those nerves often get in the way of scalpels.

The list of possible outcomes of a cholesteatoma includes many layers of nerve loss, hearing loss, facial paralysis and a lovely thing called CSF leakage, which is when your brain fluid makes its way into the world via the previously mentioned crack in the brain cavity. This ‘CSF leakage’ isn’t the thing that can kill you. What has a very good chance of killing you is what makes its way back into the brain cavity via that same gap in your skull.

I was 11 when the first cholesteatoma was found growing in my ear. It would appear that after much toing and froing much more recently, that first, or possibly second cholesteatoma made a move into my skull. 

That hitherto unknown development has led to months of tests and a terminal bone cancer scare. Terminal.

There’s a scary thing. It comes when you attend an appointment for an ear problem and suddenly realise there are more medical staff than normal, more than required, and one bloke big enough to carry you.

It happens when the consultant uses the term ‘multiple myeloma’ more than once with the words ‘we just need to be sure’.

And then you Google it.

I imagine the scream from inside my car travelled further than nature and car mechanics ever intended.

There have been many scans and appointments to figure out what the shadows in my skull CT scan are, that and the sizable air pocket in one of the skull bones demand answers. If my surgeon knew any of this skull base business at the time of the first surgery he failed to mention it in any great detail in my medical records. Par for the course in ye olden days.

I say I remember pain, but I probably had discomfort and noise, mind-bending, insanity creating, dark pit of despair circling, never-ending, out of tune, out of focus, unstoppable noise. The pain may be a figment of my imagination. I say that as I am currently recovering from yet another cholesteatoma surgery I had a few weeks ago, and there was very little pain before that.

They say getting a cholesteatoma is rare, getting two is “exceptionally rare” and racking up three or possibly four across both ears is near unheard of. I remain somewhat unconvinced by suggestions of rarity. I can’t tell you how lucky I feel.

Where this brings us is to hearing loss and living in a hearing world with very little of it to go around. I lost the hearing on my right-hand side when the first cholesteatoma was removed, and for about the last six months I have been almost entirely deaf on my left side too.

Reader, I can tell you it is not pretty.  

The past six months have been terrifying, eye-opening and inspirational in equal measure. You learn a lot about yourself when you lose something as fundamental as your hearing, the loss of a sense is big. You learn a lot about other people, their patience levels and their empathy, you learn to shield yourself from the impatient, the self-obsessed and the hurried, you learn about who you can rely on very quickly and you learn to slow down. You learn to slow down.

You learn that being near deaf in the middle of a pandemic with a never-ending whistle living inside your head when everyone is wearing facemasks is an absolute pain in the arse. You learn that you can’t trust yourself to drive, or go out on a bike, especially not when you live in a city. Phone conversations are a thing of the past, headphones, even really loud ones, are a no-no, a translator is required for everything,  telephone conversations and menial tasks, it takes a very brave cold caller to ring your number or knock the door.

But it’s music that kills me.

I’ve been going to and or working at gigs in one shape or another since I was volunteered to help the “stuff picker-upper” at a Watercress gig in The Empire in 1995.

As I write I’m currently running on about 15% of the hearing I should have, probably less, I haven’t had an unimpeded telephone conversation since before Christmas. On the other hand  I have been spared Zoom calls on account of the deafness and whistles not dealing at all well with dodgy connections and feedback. The volume on the soundbar for the Television has not been lower than 100% and subtitles can often get in the way of the picture. When they exist. They often don’t, even on new-fangled devices and streaming films.

Imagine that.

Scripts exist but we just can’t be arsed adding them onto the content on screen. I’m looking at you Amazon and Sky TV.  It has been a long six months. A very long, quiet six months.

I was quite happy living on par with fellow deaf on one side folks like Stephen Colbert, Bruce Willis, David Hockney and, well, Beethoven. You learn to cope, to sit at points in a Bar, restaurant or a meeting where you’ll hear people, walk on the right-hand side of everyone, get tech that allows you to switch everything to mono, that kind of thing, there are tricks and things you can do. It’s passable. Manageable. For the most part. For the most part, you put up and get by.  

But near-total sudden loss is immediately isolating, scary, it feels like some other world where echo and distortion are paramount, where every sound feels like it’s coming through the outsize tank at Sea World, all muffled, dull, dead. Lost someplace else.

I was at a gig a couple of weeks ago on Penny Lane in Liverpool, to say it was a struggle is an understatement, the music was lost on me, the chatter among larger groups impossible and my ability to write a review to go along with my photographs a thing too difficult to rectify. The point when the room went quiet in awe of the performance and I couldn’t hear the noise creating the awe brought forth tears. I hid for a while at the back pretending to tinker with a camera.

It’s a heart-breaking thing when you discover the thing you love is just, just out of your reach.

I think that’s where the problem is. 

For me, for others I know, loss of hearing over the long term is manageable, sudden loss feels like theft. Nothing matches your expectations, nothing matches your memory; distortion overrides reality, the muffled noises become the new you, the new soundtrack, the new reality.

It is a strange, frustrating world that moves at a spectacular rate while you try and read the garbled subtitles juddering across the screen in not so glorious technicolour.

The film Sound of Metal came up in an online chat not long ago, I was told by friends to avoid it as it was probably too close to home. I was told by a few that the main character, Ruben, played by Riz Ahmed, was annoying, selfish even and that he was never going to be happy with an ‘attitude like that’.

And that is the bit you’ll probably never understand.

That frustration, that anger, that sadness when you realise what has been stolen, that heartbreak at the knowledge that the thing you love will never sound the same again, the confusion over what you hear and what your brain tells you it should sound like, that is pretty indescribable.

So many of our memories are made up of sounds; moments in music, that first teenage crush, the first record, the first dance in a club, the first gig, the first song to soundtrack a breakup, the first dance at your wedding, a song played at a funeral, your favourite gigs, your worst gigs, Sunday night sessions, festivals on a Friday, everything has a soundtrack. Every day has a sound, if it isn’t the one you put in it’s there in the space around you, in nature, in the plumbing and on the high street.

What do you do when someone hits the mute button, when your life becomes one long zoom call where everyone is waving their arms about and you can’t unpress the button, what then?

Without wanting to sound like a cheap print off Wayfair or Wish, I am blessed that the deft hands of a surgeon seem to have saved my hearing on the left-hand side, lucky that the cancer scare was just a scare and the nine weeks of not knowing was only nine weeks.

We’re not there yet but the volume is increasing, the world is becoming louder again, it’s almost a little alarming how loud some things are. If the cholesteatoma is gone then we win, the whistle is still there but for now, we win; this is a battle, not the war, whatever sound we get now is a reprieve.

For me to tell you to look after your hearing seems trite, it feels more important to tell you to enjoy every song, every bum note, every cheeky joke, every podcast, every album, interview and every single thing you can get into your ears. More than that though, you should look out for your ears, get good earplugs, avoid the moshpits and the really big speakers and take your time with people who live in a world much quieter than yours.

If you ever end up working in TV sort out the fucking subtitles.

More importantly, after months of silence, for all of us, enjoy the show, get to as many gigs as you can, buy music direct from the artists and sing like no one’s listening.  

Sing like no one is listening.

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