Experience: I suddenly lost my hearing

I’m obsessed with music. As a teenager, I couldn’t leave the house without my headphones, and I’d have music on all day. I met my best friends at gigs. My summers were filled with festivals, and my shelves with records. Last year I was in the top 1% of Spotify listeners from over 400 million users.

But on 14 December last year something changed. I was watching TV at home in Sheffield and became aware of a faint tapping sound in my left ear. It wasn’t loud enough to be annoying, but the next day it turned into a whooshing sound. I feared it was tinnitus.

Those whooshing sounds began to sound like loud crashes, and by the weekend it had started to become hard to hear in my left ear. Six days later I went to see my doctor, who looked in my ears, said they were a bit red, reassured me there was nothing to worry about and prescribed me some spray. I was told I would be fine again in a few hours. But I wasn’t.

By Christmas Day, the cycle of tapping, whooshing and crashing in my left ear was getting louder, and it was getting harder to hear with every hour. On Boxing Day, the crashing noises started in my right ear, too.

I booked another appointment with my GP and saw a different doctor. He looked in my ears and said they weren’t infected. He prescribed some spray and told me to come back in two weeks if it didn’t help. The next day I could hear music on my headphones but could barely make out people speaking. The day after that was the last time I was able to hear voices.

I went for a hearing test at Specsavers in the new year. When I set off, a fire engine zoomed by but I didn’t hear anything. It was starting to feel really serious.

I was then given an emergency referral to the ear, nose and throat department at the hospital. As I was struggling to hear, my doctor and I typed notes on my phone. The doctor wrote that my ears were fine, and wondered if my condition was brain-related. When I was a teenager I was diagnosed with mitochondrial disease, where the mitochondria in the body don’t produce enough energy. For me, the condition causes what feels like a “block” in my brain: when my brain sends a message, it doesn’t go through to my body. My muscles won’t listen to my brain and my speech can get unclear.

I was then sent to see specialists in Newcastle. They said they were 90% sure it was the mitochondrial disease that caused the deafness, but they couldn’t say for sure and hadn’t heard of this happening to anyone else. So technically, I am still undiagnosed.

Nine months after my symptoms first appeared, we don’t know any more. The whooshing and crashing sounds have stopped; but when I sit in silence with the TV on, all I can hear is a faint, indescribable background hum. At the gym, I can hear the clatter of the machines, but not the music playing.

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I have since been to a couple of gigs, but they just sounded like noise. I went to a festival and sat on the grass with an overpriced pint – it all felt familiar, but the main ingredient was missing. I miss podcasts and being able to casually watch TV. I’m bored of having to read subtitles. I was expecting to miss music more, but weirdly I haven’t; that might be because my brain still plays songs in my head.

I was given hearing aids, but they didn’t work. I’ve signed up for a lip-reading course and am learning British Sign Language. My friends have been great, some have offered to learn BSL, but I feel it’s really me who has to adapt to this new life.

Other deaf people have warned of feeling isolated and I’m determined not to make that my life. I do get anxiety when I have to leave the house, especially when I go out of my comfort zone. Going to a bar and asking for a drink is fine until they start making small talk – at that point I’ll declare I’m deaf.

I’ve always preferred to plan ahead, but since this happened I take life day by day. I have got tickets for Taylor Swift next summer, though, knowing it’s a good show to watch even if I can’t hear the music. But who knows what the next 12 months will bring – the doctors have speculated that my hearing might come back. The future is uncertain, but I’m at peace with that.

As told to Daniel Dylan Wray

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