Coming to terms with losing my hearing

Going deaf at 27 really isn't the vibe

Hello everybody. If you haven’t heard from me in a while, I’m now deaf in my right ear. It all started one morning in early 2022 when I got out of bed and heard a really loud bang. At first, I thought it was a sensory anomaly I’d read about called Exploding Head Syndrome, an auditory hallucination you can experience during the sleep-wake transition.

I thought little of it and kept plodding on with my morning routine - but quickly began to notice that my hearing had deteriorated. The slim amount of muffled noise I could hear on my right side sounded pitched up like a Nightcore remix. When they got home, I joked with my partner that if I plugged my left ear with my finger, I could lift the world up by a semitone.

Gordon Cole has always been my favourite character in Twin Peaks, now he’s my hearing-impaired hero.

Conversations quickly became difficult as a result of this confusing imbalance. I could hear my own voice, but it was warped ever so slightly - I sounded like an evil version of myself in my own head. I went to bed that night and put my left ear to the pillow, and it was as if I had hit the mute button on the TV remote connected to my brain. Something was wrong, and I was terrified.

At this point, I had already been to the GP to talk about my hearing. In late 2021, I went through a worrying phase of losing my balance in public, experiencing strange bouts of sickly vertigo over the course of a few months. It was as if I had defied the Earth’s orbit and also had terrible input lag. In The Hancock pub in Newcastle, I distinctly remember having to confine myself in the enclosed safety of a toilet cubicle to wait out the symptoms. To my friends outside, I’m sure it just looked like I was fighting for my life in there. In reality, I didn’t even lift the lid.

After another similar scenario, I rushed to the doctor. I had three subsequent appointments, and they all went like this: They’d check my ears, tell me everything was fine and healthy-looking, and leave me with the same piece of advice - to make a habit of pinching my nose and blowing my cheeks out like I’m playing the trumpet. It did not help, but I figured it would subside eventually. The balance issues did - the hearing problems did not.

A frightening search for answers

When I went back to my GP after the big bang happened in March 2022, we did the same brass dance, but I was referred to my local Ear, Nose and Throat department, which felt like progress. I called up the next day to confirm it, and they told me I’d be waiting at least six months to be seen by a specialist, as that was the bracket of urgency my referral was in. You’ve got to remember that at this time, the UK health service was (and still is) recovering from the impact of the Coronavirus pandemic.

And if you’ve had the rona before, you’ll know that the virus is pretty damn good at attacking your E’s, N and T, so the wait was somewhat expected, if not personally troubling. The doctors had said to my face that they had no idea what was wrong with me, and I wouldn’t be getting any answers until I made it off the waiting list - so my inner hypochondriac was doing backflips.

A frightening search for answers began. I did the cliche thing of googling my symptoms and spent many sleepless nights reading. I kept being confronted by the abbreviation SSNHL (Sudden Sensorineural Hearing Loss). I read first-hand accounts on Reddit of all places, and the stories lined up with my own, which, as you can imagine, was both comforting and unsettling. I learned about ongoing research concerning SSNHL, COVID-19 and Long Covid, and despite being vaxxed up to the maximum, I had caught it twice, and had recent ear infections.

The chaser to this mortifying shot was learning that SSNHL is typically an ENT Emergency. If you aren’t treated with steroids within the first two weeks, the damage is usually permanent. But Google is not a doctor, and I was no closer to the truth. Beyond SSNHL, there was a wide range of diseases and afflictions (all ranging in severity) that could have caused my hearing loss. In lieu of a real-life diagnosis, I figured it was worth ruling out what I could in the meantime.

Vigilante healthcare

Looking back and knowing what I know now, this feels like the first stage of grief. In one of my rabbit holes, I read about disorder of the Temporomandibular joint (the hinge connecting your jaw to your skull), which can, on rare occasions, affect your Eustachian tubes and impact your hearing. My dentist has always said that I grind in my sleep, and when I went back to get a check-up, they said it had gotten worse (likely due to all the stress) and recommended a dental splint. Surely this was it, I thought.

I wear a mouthguard to bed now, but I’m still half-deaf. So it goes.

I visited A&E twice over the coming months as my hearing got worse, and I tried to follow up on a lead about Eustachian Tube Dysfunction. I got a free audiogram at Boots that confirmed my fears, and took it to my GP. But I kept hitting the same wall I was already surrounded by. My issue was a job for specialists, and they were all slammed. There was nothing they could do for me. It was a tough pill to swallow.

As the leaves started to fall on a difficult year, I explored my options in the world of private healthcare. I quickly learned that I couldn’t get any insurance for my condition. I had already spoken to my doctor about it, so it was classed as pre-existing. So the only option was to go direct and fork up private rates for an ENT.

Desperate and confused, I pulled some money out of my savings and did just that. I went to a private clinic for an initial consultation. It took around 30 minutes, and they checked my balance this time, which was new. They also gave me some familiar advice relating to a brass instrument, which wasn’t new.

I’m breaking this grim chapter up to show you a picture of me with Alan Shearer as a baby. Consider your palate cleansed.

As for the next steps, they recommended I undergo an in-house audiogram as well as some other further tests. I went to the reception to enquire about this, and they handed me a piece of paper with a sheet of costs for patients without insurance. The number of 0s would stagger you. Spiritually defeated and financially bruised, I never returned.

Back at the drawing board, I recalled that my NHS GP said my ears were a little waxy. So I went to an earwax removal service and had them cleaned. The person doing the procedure was an ex-A&E nurse, and when I told her about my situation, she had terror in her eyes. I felt like she knew that I couldn’t be helped at this point, only managed. She said it was absurd that my case wasn’t treated as an emergency, given how young I was and the unusual nature of it.

I sat there in the eye of a sound tornado, hoping I would feel differently after. That maybe there’d be a resounding ‘pop’, and my symptoms would be inverted, and this nightmare would be over. The car home was quiet. I had officially run out of options. Save from bothering the ENT department, it was just a matter of time.

The due date for my referral had long passed by this point, and I had heard nothing back. I swallowed my fear and pushed it to the side. I started to wonder whether I was worth consideration. The repeated knocks meant my mental health floundered, and my confidence sunk considerably. I already have a diagnosed anxiety disorder, but this made it ten times worse. I learned that people cannot see hearing loss, but I could feel - acutely - how it was impacting all of my interactions.

Group conversations in busy environments started to require exhausting mental energy and focus. Events and social engagements became something to fear - and eventually avoid. Music didn’t sound the same anymore. I distracted myself with work and became resigned to my fate and the comforting ebb and flow of day-to-day life.

Steroids and Sertraline

Fast-forward to June 2023, a year and change after the big bang. I got a call from the ENT department about a cancelled appointment and dropped all my plans to make it. I took an audiogram in a soundproof room that looked like a beat-up war bunker - a process I’m now very familiar with. I listened to a bunch of different tones and pressed a buzzer when I could hear them. Something I didn’t think about is that you can trick your brain into thinking you hear something - we’ve all done it - but when you’ve got Tinnitus and hearing loss, you’re adding new layers of difficulty to that process. Either way, you can’t do well at an audiogram, even though I definitely tried…

I went to see the department nurse after, and they gave me a familiar look - the same one the earwax nurse had given me almost a year prior. It was a mixture of confusion and pity, affirmational of my fears. They believed I had indeed suffered from an SSNHL. They couldn’t pin down a direct cause but assumed it was COVID-related in lieu of anything else. I was referred for Hearing Aids and an MRI to rule out anything sinister.

The next week, I started a course of SSRIs to try and gain some ground. My physical health was impacting my mental health, and I figured I could at least try and mitigate one while I waited for more answers. But a week after starting the course, I woke up, and my ear was louder than ever - it felt like my hearing had gotten worse again. I contacted my doctor, and they told me that I had to stop taking the SSRIs immediately. Don’t worry; the tragic irony of this situation was not lost on me…

Instead, I was given an oral steroid that could potentially help my hearing. The damage was done, but if this was another attack, at least I was getting treatment in the moment. I had to take 12 (yes, you read that right) pills a day, and it made me sick - it was awful. It didn’t do anything for me, but it was worth a shot. My doctor sent a letter to the ENT department to get me seen again, and I went in for another audiogram in the sound trench.

I went to see the Lead Consultant, who, after shooting me that same unnerving look - confirmed that the worst had happened. Whatever hearing was remaining in my right ear was all but gone now. I wasn’t sure if the adverse reaction to the SSRIs had done it or if I’d flunked the audiogram - the difference was hard to parse. Either way, I now had profound hearing loss in my right ear. Single-sided deafness, they call it.

The Lead Consultant suggested a Hail Mary, though, and I went with it - after waiting so long for action and solutions, I wasn’t going to say no to anything that could potentially help. He suggested an Intratympanic steroid injection, which is just about as horrifying as it sounds. Here’s a diagram, but essentially, the ENT takes a needle and penetrates the tympanic membrane to inject steroids into your middle ear.

I know, right?

A nurse numbed my ear with local anaesthetic first, but having no reference point for how this was meant to feel (who does!), it was up to me to decide how successful the application was - I was told it would be fine. The ENT completed the procedure and told me to lie on my side - and they all left the room immediately after, which, in hindsight, put a lot of faith in the fact that I would be OK. Now, just as a refresher, at this point, I was in the middle of a two-week course of oral steroids that were suppressing my immune system - I felt extremely weak and achy already without the extra dose of steroids in my middle ear.

Concentrated Scotch Bonnet

What followed was, without a doubt, the worst pain I have ever felt in my life. I’ve come up with a few descriptions to try and explain it, but nothing really captures it. Imagine injecting concentrated Scotch Bonnet into your ear and having it slowly drain out of your mouth. Or, imagine your head as a bunch of rooms that make up a house. It was like someone had lit a bonfire in the foundation.

As it spread through my degraded sinuses, I really thought that something had gone horribly wrong. I was alone, writhing in pain on a hospital bed, convincing myself I could cope. But the pain cave had no vacancy today. As well as worrying about what the hell was happening to me, I realised I had no water, so I texted my partner, who was in the waiting room, to ask someone to check on me. The nurse came in, saw the state I was in, and then said, “You can’t just rely on your partner, you know? You have to come get us.”

I did not have the fortitude to respond to this absurd ask, but short of literally screaming for help like a madman, I wasn’t sure what they wanted me to do. There was no button to press to alert anyone, and I was under express orders not to move from my hunched fetal position or the procedure would be a bust. I can laugh about how surreal this was now, but at the time, it wasn’t funny. Thank god I could even reach my phone, or I would have been stuck in there, alone, for another 45 minutes as the steroids ran their course.

My family members were let in, and the consultant came back and apologised for what had happened but hoped that the treatment would help. Unfortunately, it didn’t. That was my lot.

I couldn’t (and don’t) hold it against an overstretched, underfunded health service that I went through all that. I also don’t hold it against the NHS that I waited so long to be seen and treated for an issue that could have potentially been reversed or mitigated if it was dealt with immediately. That is the system we’re dealing with now, I’m afraid. But I think I can hold that in one hand and hold the fact that this whole process was traumatic and character-breaking in another. Indulging the blame game won’t change my new reality - trying to move forward will.

You don’t know what you’ve got ‘til it’s gone

I picked up my NHS hearing aid shortly after, at the beginning of July. In the soundproof room where I had it fitted, the results were impressive. Instead of being unable to hear my mam on my right-hand side, I knew she was there and could somewhat intuit what she was saying. Broadly, my hearing aid is a situational upgrade, but it’s not a fix by any means. It is working with what I have left, and that is very little. It’s also reproducing sound, and no matter the quality of the speaker, we haven’t surpassed the intricate power of the human ear. Even if I make it as loud as possible, I still struggle in social environments. I can’t use my dominant right hand to put my phone to my right ear anymore, and asking someone to repeat themselves is my new hobby.

One of the first things I did was use the Bluetooth functionality of my Hearing Aid to beam Spotify to my bad ear, hoping it would sound alright, but I found this wasn’t worth it. The direct line meant the clarity improved, so I could kind of figure out what the songs were, but they didn’t sound anything like they should. To get my bad ear to recognise music, I have to turn it up extremely loud, and even then, it’s super blown out. For my Geordie friends, the audio coming into my right ear sounds like it’s being filtered through a Nokia 3210 blaring Makina at the back of a Go North East bus.

Shortly before this test, my right ear was injected with Shrek-green foam to create a custom mould. On balance, I can say it was my favourite injection of the whole process.

The severity of my hearing loss meant that I quickly discovered the upper limit of my hearing aid. It’s hard to tell if it’s helping or complicating my hearing a lot of the time. Sometimes, I feel like it is just filling my right ear with bad noise, hindering what I can hear on the other side. On some occasions, I wish I could just switch off my right ear completely - you’d be surprised at how much your good ear steps up to the plate when you lose your hearing. But it’s not that simple - I can’t just mute the bad ear and see improvement. My new live-in companion, Mr. Tin Nitus, lets me know he’s there whatever the weather - and cannot be evicted.

Regardless, I endeavour to wear my hearing aid as much as I can. I am in the process of saving up and looking into private hearing aids, though they are extremely expensive (like £4000 for good ones), and the process of getting them feels awkward and sinister in that very neoliberal way, with payment plans and special credit cards and all that supposedly “pro-consumer” jazz.

Every cloud, though. I only need one of my AirPods now, though Apple doesn’t sell them individually. Untapped market!

MemoRIes of the Future

I made my final trip to the hospital a few weeks ago to have my first-ever MRI, focusing on my Internal Auditory Meatus, whatever the hell that is. It sounds terrible and is probably a difficult feeling to understand, but a part of me wanted them to find something - there was that impulse, that naive hope that this was all a bad dream and that they would find the missing piece of the puzzle, dislodge the blockade and I’d be right as rain. But they found nothing to worry about.

After 675 days or nearly a million minutes, I was discharged back to my GP on the 15th of September earlier this year. I want to thank the loved ones who have stood by me as I’ve run the gamut of difficult emotions throughout this process. Now, I’m just figuring out how to live the rest of my days with a life-changing disability. This part is, in some ways, even more difficult than the last. I’m in therapy, thankfully, to try and work through it.

When I’m in a bad way, I worry about everything getting worse. As I age, my hearing could deteriorate in my good ear eventually, and I’d be left completely deaf. I worry about losing the voices of my partner, my family and friends. I worry about not being able to hear the sounds of nature, or the voices of my kids, or even my grandkids, eventually, when those situations come to pass.

But I try not to concern myself with that right now. I’m extremely lucky even to have a good ear left to hear from, and I’m not going to let this get in the way of me living my life. I travelled to Gamescom, the world’s biggest gaming convention, last month. I worked my way through a busy schedule of appointments, including interviews and previews. I hung out and socialised with industry friends, old and new. It was challenging in new ways, thanks to my hearing, but I still managed, and I don’t think my work suffered for it.

Here I am doing my “Job” with my hearing aid in.

If you’ve read this far, maybe all of this is news to you, or maybe it’s not! I’ve not been the best at keeping people posted with what I’ve been up to, even before all this, and despite how much this has humbled me, I’m also pretty stubborn - but I’ve realised that trying to muscle through and cope hasn’t helped me at all so far.

It’s hard to announce that you have a disability, though. There’s a lot of shame attached to that, and I’m keen to let it go. I’m not looking for pity but understanding. I just think it’s useful for people to know about it so they’re not (understandably) confused when I start asking if I can sit to their right when we go out to dinner. When friends have asked me if I’m okay, it’s not as if I can just dump ‘the 22 months from hell’ very easily in the space of a catch-up, never mind a short conversation.

Finally, if you’re reading this and you have noticed any hearing-related issues lately, or if you notice some in the future, like a sudden hearing loss, go to your GP immediately and ask to be seen by an ENT. You can book a free audiogram at Boots if you’re curious about your hearing health, too. Basically, don’t take your hearing for granted - because it can be gone in an instant, and it changes everything. Previously, I had a naive view that hearing issues were something to be concerned about when you’re old, but this happened to me when I was 27 - and it can occur at any time.