Think you know what it’s like to be deaf? I did

In 2022, Spotify had over 400 million users and I was in the top 1% of listeners. In January, I cancelled my subscription.

Within the space of two weeks in December I went from having an annoying tapping sound in one ear to completely losing my hearing, independence and music, the thing I obsessed over.

It is a good job I didn’t have any New Year's Resolutions as this isn’t the 2023 I'd planned for. It started with trips back and forth to the hospital, failing hearing tests and meeting doctor after doctor who had no idea how to communicate with me (even the doctors who specialise in deafness).

January had felt like a lifetime, I mean, it always drags but this was different. I’d gone from feeling like I was going mad and paranoid to real dark times whilst taking prescribed steroids, then just waiting for some clarity.

The month concluded with an hour and half test on my head, and a short wait for the results. The doctor was friendly, she actually tried to communicate with me, scribbling down the hot takes on paper before explaining in depth with my parents (I’m 36 and I’m now having to rely on them for the big stuff).

Reading “your ears are fine, it’s brain related” then trying to avoid eye contact with my parents whilst the doctor tells them what I was still processing wasn’t enjoyable.

I had become a regular in January, two or three visits a week, but after dealing with that news they left me for two weeks. A cliffhanger.

And if I was hoping for the story to continue when I returned after a long 14 days, no. In reality, we’re now in May and my deafness is still a bit of a mystery, and not just for me; my brain is puzzling for specialists too. I have been Googling for anything, and when it comes to Sheffield and deaf-related advice, there’s little out there, but I came across this article on Now Then that I could relate to. The scenarios were different but they expressed their frustrations about dealing with health professionals as a deaf person and it made me feel like it isn’t just me who's found this experience ridiculous.

This deaf life seems like the norm now (well, not ‘normal’, but y’know…), mad that it has only been a few months but I’ve got to take it day to day.

The future is too big and too uncertain to get my head around, so I haven’t even thought about it. Maybe that’s why it seems too easy. Instead I’m busy curating outfits to force myself to be social. Despite how uncomfortable and awkward it can be, that will ease with experience, I’ll learn to be better and that’s when the anxiety won’t be on red alert all of the time. Every time I leave the house I have to plan everything and go through every possible situation in my head so I know how to deal with it.

So how can I be deaf when my ears are fine? Who knows? The docs don’t even know but I guess living with it is… interesting! My ears are still doing their job so my deaf world isn’t quiet but it is my brain that decides what I hear. I am hearing more of the ‘real world’ now but it is what is going on in my head that is wild. My brain plays music (the docs haven’t heard of this before). It isn’t like I’m consciously thinking about a song, it’s like someone has pressed play but it’s in my head. I can feel my brain pumping and when the bass kicks in I can feel vibrations go down my body. Sometimes I recognise the songs, but usually I don’t.

In the mornings, in my silent flat, I can hear chanting over a dance beat. If I play a song on my phone really loud it sounds like ‘noise’ but I can pause it then hear the song playing in my head, clear but really quiet. That delay is easier to spot if I’ve been somewhere loud and leave, that ‘noise’ continues to go around in my head for a few minutes.

The times that my brain lets me hear people talking, it isn’t clear (and they don’t sound like they used to). Sometimes it is like they are saying each word separately, not like the usual rhythm of a sentence, as if my brain is trying to break it down and make sense of it but it rarely does. I can hear my own voice but it sounds muffled.

Occasionally there’s a trigger. My brain makes associations, like when I was reading a Gracie Abrams interview and my brain started playing her songs without me consciously thinking about it. If I’m reading something short, like a text, I can hear the voice of the person who wrote it saying it on loop in my head.

I’m not sure what is weirder, what I’m hearing or how I have dealt with it. January was tough (aren’t they always?) but since then I have been fine. I was getting frustrated because everyone was asking how I was. I mean, it’s not ideal but you’ve just gotta deal with what you’ve been given, right? I’m just trying to normalise it, do what I’ve always done. Life can’t stop because I can’t hear.

The anxiety will ease with experience and my brain will hopefully settle down at some point. If I am currently floating, I thought I should prepare for a bumpy landing so I went to see my doctor, who actually laughed that I thought he, a doctor, had access to counselling. He told me to go to charities…

Communicating is the biggest challenge, a lip-reading course is booked, BSL will have to follow but for now I have to rely on my Notes app to (inaccurately) transcribe what people are saying. It can be annoying but I can live with it. Small talk is too much effort so I look rude and just don’t bother. Being with a couple of people is manageable but groups are too much; not only is it tough keeping up with what is going on but I’ve also got all of the noises in my head, then the delays.

I end up craving peace and quietness. Declaring that I can’t hear is awkward, I can go to a bar, order a drink and it is fine, unless they ask a question. Saying the words “I’m deaf” feels weird.

Life will change. I no longer have a relationship with the records on my shelf. I’ve tried gigs but they just sound like ‘noise’ so I’ll need to find something else to fill the vacant parts that used to be my life.