And I made this website.
‘Come Again?’ is something all of us hard of hearing folks say, a lot.
‘Come Again’ Is what I hope you do, to our community.
Below is my story, I had two rules when writing it: 1) No AI. 2) Do it in one go.
It’s not an inspirational ‘journey’ – That’s what the images are for.
So this is me – in a nutshell.
So, when I was 17 I was walking near my parents’ house, and I smelt a horrendous smell. I thought I had trodden in dog muck, so I checked my shoes. Nothing.
The smell, though, stuck around. Every now and then I would smell it. It drove me mad. I had a bath. Next day, same smell.
Then I happened to rub my ear, and the smell on my hand was awful, and strong. This is the first time I knew something was not right.
I went to the doctors. He made an appointment to have my ears syringed with warm water. A few days later I went to the nurse there. She looked in my ear, examined it and said:
“I am not syringing that.”
That was how it all began.
I had a massive infection in my left ear. Now, as many will know, by the time you see infection coming out of the ear, chances are the inner ear has been in a bad way for a long time.
This was the case for me.
I was taken into hospital for the operation to try and clear it. I was young, scared and didn’t really know what was happening.
I remember waking up in hospital and having a ridiculously huge dressing on my head. I remember it. It was thick, but still, there was blood on a part of it.
The details are hazy now, but essentially the infection had worked its way into a part of my skull where it is honeycomb inside. They had to remove that portion of my skull and, of course, try to extract all the rest of the infection.
It was an invasive and extremely full-on operation. I really had no idea that I was going to be put under for multiple hours, but I was. I really was not with it while I was in hospital. People visited, but I don’t remember them doing so.
In the operation I lost my anvil, stirrup and hammer bones in that ear, and holes were found in my eardrum. The infection had basically ravaged me completely.
The aftermath of the operation was real. I had dressing pushed deep inside my ear, about a foot long when laid out. These needed changing every few weeks, and it was painful every time.
Once that phase was done with, I had to go back to have my ears “suctioned” — basically a metal tube attached to a vacuum cleaner to clean out dried blood and debris.
I hated it. It hurt, every time.
The machine was called “Victor Vac”. I’ll never forget that. It had a badge on it saying so.
I hated Victor.
Sometimes they would have to cauterise inside. It hurt.
Everything in this period seemed to hurt.
So that was me. I didn’t really have much in the way of support. I just dealt with what had happened as best I could.
No hearing aids, no real aftercare, just endless vacuuming and antibiotics.
Life was still OK. I went to college, did a uni course, got on with things. Every now and then the dreaded smell would return, and so I went on antibiotics. This cycle continued for months. Years, in fact.
Sometimes the antibiotics didn’t work, so another operation. Never as bad as the first one, but invasive and unpleasant all the same.
But I ploughed on.
I had a good ear and a bad ear. I adapted.
Hearing in mono would do, I guess.
I did ask, after the first operation, what about my other ear?
I was told that it’s really quite rare to get infections in both ears. This wasn’t a condition as such. It was an infection.
My other ear got infected.
This is when things started to get bad for me, because this is what I did not want to happen.
My hearing in my right ear was failing. I could tell. You can, when it’s your only good ear. It stands out.
With my left ear, well, I guess my good ear compensated. Live in mono.
This was noticeable. I started to struggle hearing people. TV.
The band I was in, well, that was OK. Loud amps tend to push through wonky hearing. But day-to-day stuff was getting trickier.
So, another operation. Same as with the other ear pretty much, but not as severe. I’d caught it earlier. Much earlier.
Still, after the operation I was left again with no stirrup, hammer or anvil bones, and I had holes in my eardrum.
Everything went on hold for me, really.
I ended up quitting my job. I was a successful guy at a place called Microdirect in Manchester, selling PC parts on the phone. I had to wear an earpiece.
Couldn’t do that any more.
No point trying, really. I had to leave.
So I did what I could. Helped DJ friends, picked up design work here and there.
But mainly, I spiralled.
Slowly.
See, at this point I still had no real aftercare. No one was phoning to ask how I was. No hearing aids. Nothing.
I don’t feel bitter about that, but looking back now it was, well, I guess odd more than anything.
I was in my early 20s and was just sort of swilling around, doing my best.
I “coped” — I did this by not hearing conversations, not really even watching TV.
My world was shrinking and I didn’t have the tools to understand it, let alone deal with it.
“What they are saying probably isn’t important anyway” would be my mantra, because I was struggling to hear. Conversations… friends… it was impossible to keep up with what was being said by people, so I convinced myself it didn’t matter.
Big mistake.
So I withdrew.
I was insular.
I was drinking. Far too much.
Nights out were great. People look directly at you and shout at you. It’s a paradox, but true: the louder the place I was in, the better.
People shouted at me.
At least I could hear them there.
In this period I didn’t even touch my guitar anymore. The band had gone. My prized guitar was left at a mate’s house.
And all the time, I was hearing less.
Something had to give.
And so it did give.
For the worst reason I can really think of.
See, my mum at this time was dying. She had COPD, emphysema…
As her voice was shrinking, so too was my hearing.
And this was really the darkest moment for me.
I could deal with missed conversations in a pub, not really watching TV, even losing the band.
But this was different.
Mum’s words were not infinite and I was aware of that.
Her words were precious and I was missing them.
So, I reached out. Properly.
I didn’t even know who, what, even if anything could be done. But it was done.
I had hearing tests and was finally given hearing aids.
I remember getting them vividly. I felt like an idiot, to be honest.
Old men wore these things.
The very idea of them was a kick in the guts to me at the time.
Then, when I first got home with them, I tried them.
And everything changed.
By this point I was in my late 20s or so — my memory for timelines is terrible — and as I unboxed them in my kitchen I remember holding them, just looking at them.
They were beige, as was the NHS fashion of the time.
I clumsily turned them on and put them in.
I was going to make a cup of tea, so I started to walk to the kettle, and as I did I heard a sound.
You know that sound your jeans make on your thighs as you walk?
That sound.
A sound I hadn’t heard for years.
I froze, and walked backwards.
It was like a little time machine. Memories came to mind of being a kid and hearing that sound.
I didn’t expect to be walking backwards and forwards in my kitchen smiling.
Odd.
Go to get a tea bag, same thing.
Cardboard makes a sound when you open a box?
Really?
And so do tea bags when you drop them in a cup?
Seriously?
I’d forgotten.
And now, I was being reminded.
It was strangely emotional. Snatches of memories.
I’d open biscuits and do it again, just to hear the wrapping crackle.
Everything sounded trebly, though. Not harsh, but fake. Like I was hearing a radio.
I was told that over the days that would go away, and it did.
Stick with it.
The brain is a wonderful thing. It adapts. Adjusts.
So.
I could hear Mum.
I still thank her for being the reason I got hearing aids.
Thanks, Mum.
She passed away not too long after.
I still miss her.
But at least I have those memories of talking to her.
So that’s me then, really.
I had more operations. Some to remove infection, some attempts to fix what they could.
Some were successful. I had my eardrums repaired, stitched.
The surgeon was a genius, and we had a decades-long relationship.
Some failed. They tried putting in titanium anvil, stirrup and hammer bones, but due to the shape of my nerves, they couldn’t.
My eardrums look like chewing gum, but I can get along now.
Hearing aids are Bluetooth. I can take calls and listen to Spotify with them.
Robo ears.
I am a cyborg, pretty much.
In fact, when I told my young son at the time that I was a cyborg, he didn’t react as I expected. He just looked confused.
A few days later I realised he thought I said:
“Daddy is a sideboard.”
Which is infinitely funnier.
Bit by bit I adapted. Took up guitar again. Had success, of sorts.
Played some amazing gigs, festivals, big and small. Played intimate gigs as a duo.
And I have discovered something along the way.
In any situation now, my hearing is a puzzle to be solved, rather than a disability that stops me.
If a soundman asks me at soundcheck, “What do you want in your monitors, mate?” I just say, “Nothing, it’s cool,” and I laugh inside at his face, confused.
But I really don’t need anything.
I don’t navigate the world like that.
I take my hearing aids out and get on with it.
Top tip: hearing aids do not cope well with stage music.
I can hear the drums. I know what I am playing.
So let’s get on with it.
The rest is all just details.
So that’s kind of where I am at.
My hearing is getting very slowly worse, and I am on the books to have a BAHA — bone-anchored hearing aid — at some point.
I actually have one in my drawer in my desk to test out.
But that’s not for now.
I still struggle hearing. Chatty restaurants are a nightmare.
I still miss things, but I can cope now.
I lipread, a little. Just enough to fill in the blanks.
Covid was awful. Everyone had a mask on, so it took away that ability totally.
Tinnitus. Yes, I have it. No, it is not nice.
I hear it loudly wherever I am. Whatever else is going on noise-wise around me, tinnitus is clear as day over it all.
I hear dawn choruses in bed that aren’t really there. I hear all kinds of stuff.
And whistling. Lots of whistling.
It’s another paradox, really — when the day is done and I take out my hearing aids to go to sleep, that’s when the noise really begins. Thanks, tinnitus. You bastard.
It’s my constant companion and just another thing I have had to adapt to.
Sometimes.
I wish I had the tools to cope better when I was in my 20s. Life went off the rails there for a while, and I feel sorry for my younger self. And the people around me.
I want to give the daft bugger a hug.
But, you know, I don’t always wish things were different.
Hearing has, one way or another, defined my life, who I am and where I am going.
And I like where I am.
I like being “that deaf guitarist”.
I like bumping into someone with hearing aids and having the best chat about it. Someone who really gets it.
It’s rare, but lovely when it happens.
“Do you get this?” And: “What about when…?”
Relating to people. Connecting with people.
And that’s why I made this site, really, I think.
It’s not a healthcare site, although we will have resources for that in time.
It’s just a place to feel seen, get info, have a laugh.
You occasionally meet another person who gets it.
The conversation is brilliant.
I wanted somewhere where those conversations don’t have to be rare.
Come again? Come Again.
