Matt Pinder describes ‘the longest year’ as he suddenly lost his hearing (BSL)

It started with faint tapping in one ear on the 14th December 2022 but my life changed before the year was over. Not being prepared is an understatement. This story is complicated and confusing because I have Mitochondrial Disease.

Living with Mito, a rare neurologic health condition is like driving a car that fails its MOT every year as it slowly deteriorates but it continues to move with a broken steering wheel. Since the age of twelve my body has gradually weakened, so the rapid speed that I lost my hearing threw everyone off.

In the New Year my parents took me to my GP with hearing test results showing a profound loss and an emergency referral for the ENT clinic in Sheffield (thanks Spec Savers!) The doctor seemed great, it felt like we were with her for an age but she didn’t attempt to communicate with me, this was a great way to infantilise a thirty-six-year-old.

The only information I had was delivered on a piece of paper saying “sudden deafness” and “steroids”, her handwriting lived up to the reputation. I was starting to get paranoid, I didn’t understand how I was being left out of this conversation, about my health.

It was like the steroids were working as a weird sensation started in my ear, like a corkscrew opening and for a few seconds I could quietly hear the TV for two nights running, but that was it. My mental health was plummeting. It was January, and I couldn’t hear, which may seem understandable but I was becoming suicidal (thinking about, not actually doing it), again, nothing new. As soon as I stopped with the steroids those dark clouds immediately left, I felt fine again, it was the meds swinging my mood.

I was back and forth to ENT in January, appointments were being booked in quickly, phoning me, leaving voicemails when they knew I couldn’t hear(!) I would meet doctor after doctor, specialising in deafness who would talk to my parents like I wasn’t in the room. Communicating via paper tired quickly so I started using my phone to transcribe people with the Notes app (it’s not ideal but I can’t lip read or sign) it’s a basic free app yet it blew the mind of doctors every time. How does the NHS not know about this tech?

Tests were becoming more in-depth but the inconsistent results were puzzling doctors. At the end of the month a doctor gave me a piece of paper saying “your ears are fine, it’s brain-related”, as they presumed it was linked to Mito and left it like that, for two weeks. What a cliffhanger!

In mid-January I had an appointment with my Mito consultant, in the same hospital, obviously he was aware I couldn’t hear, I told him it happened in two weeks, he didn’t say anything yet it isn’t typical behaviour for the condition. A few weeks later he brought me in for an emergency appointment after seeing my latest MRI scan, he said my brain was doing “unusual” and “complex” things that he hadn’t seen before and he would seek advice from Mito specialists in Newcastle, I had to wait five months to see them.

I was hoping for some answers in Newcastle, but, no, again they said it’s “complex” and “unusual”. They see the majority of Mito patients in the country and they hadn’t come across one who lost their hearing but they are 90% confident that my deafness is linked to Mito. How am I the only one? Ever!

They are aware of people quickly going deaf after seizures, so they insisted that I take meds to prevent damage from seizures in the future, without evidence that I have had seizures. This medication has played with my mental health worse than the steroids did, I lost my interest in “living”, just existing, waking up to count down to bedtime.

Tests for a cochlear implant came with inconsistent results too but my ear nerves are working. Some of my hearing has returned to a moderate level, I can hear some “noises”, sometimes I hear voices but never words. I don’t know what a “typical” deaf experience is like but mine hasn’t been quiet. As it is neurological my brain does odd things, like play music, I can feel it bouncing and my body can vibrate when the bass kicks in. It can be so loud I forget it is only me hearing it, and when music isn’t going on it’s just indescribable background noise.

I started socialising again, communicating via Notes app, going to usual places like the pub, a couple of gigs (which just sounded like “noise”) and a festival (I left leaving frustrated and short-changed.) I was trying to to livemy old life, convincing myself that it was “normal” but in reality, it wasn’t the same, it was fake happiness.

The worst day was at a wedding – it wasn’t the wedding, that was wonderful, and it was one of my best friends – but it shouldn’t have been like how I experienced it. The ceremony was silent, I could see the laughs with the speeches but I missed the jokes, I felt paranoid and anxious, I avoided eye contact with everyone so they wouldn’t try talking and left as soon as I could.

The world isn’t made for deaf people, you can physically do everything you could do before but it is harder, just leaving the house can be filled with anxiety in case I have to make small talk. It isn’t worth the effort and having to declare “I am deaf” will always be awkward. Then there’s the little things like choosing to shop in places with self-checkout and hoping bar staff don’t want to know about my day.

When it comes to friends I’m always conscious it’s not their responsibility to adapt, it’s not easy or fun for them. Trying to get support is almost impossible, my doctor laughed and told me to go to a charity whilst Universal Credit isn’t accessible.

Losing independence in your thirties is a hard thing to accept and having to put all of my trust in others isn’t easy. I need to find a new purpose to live for, one that I can fully immerse myself in, not try to recreate things I used to enjoy as they won’t be the same again.

I have always written for an audience but I started writing for myself, it helped me process what happened. It became a coping mechanism, especially during bad times but those diary entries will stay between me and my phone to cringe at. There have been days when I thought I was going crazy, some nights I’d drink just to blank it out and switch off. I even quit social media and I haven’t missed it nor had the feeling of FOMO.

Obviously I can’t criticise the NHS for not knowing what is going on, it is an unusual thing to happen to a rare condition but leaving things unfinished does feel like I have been neglected because they just “don’t know”. The mad thing is, it is now October and I don’t know any more than I did in January when the doctor gave me the “ears fine, brain-related” note. Technically I am still not diagnosed.

I have only just started my deaf journey, but I rarely look back on my old life. Of course there are loads of questions I have about the future. Mostly, how do I fill that huge hole that music used to take? I have gone from someone with a calendar full of plans to someone not wanting to think of another day on mute.

Written by Matt Pinder. 

Photography credit: Jo Ritchie. 

Has this happened to you? Do you know someone with Mitochondrial disease who has lost their hearing? Comment below if so as Matt would love to hear from you.