My Hearing Loss Story – ish!

Yesterday, a fella I follow on Mastodon, John, posted this:

It’s a really interesting article where Mary Louise Kelly talks about her hearing loss and some of what she says resonates with me. It’s worth a read. Anyway, I thought I’d share my hearing loss journey*.

Unlike hers, my hearing loss is not genetic and I’m not going in to how I lost it here, that’s another story.

I was 17 when my hearing started going and initially it was like I was constantly underwater. I was felt like I was always trying to clean my ears, no matter how painful it was, because I thought it would fix it. After many medical appointments I was told the loss was permanent and would get progressively worse. I was advise to learn sign language while I could still hear. Future appointments were made for hearing tests so they could estimate how soon I’d lose my hearing fully and after two years I was informed that by the time I turned 40 I’d have lost all the hearing in my left ear and over 50% of the hearing in my right. I’ll be 50 in a few months and it isn’t as bad as they predicted by it’s bad enough.

An appointment was made for a hearing aid and I refused it. Having a hearing aid would make it real and I wasn’t ready for that.

As the years went on the swimming pool effect disappeared and now, instead of sounding like I was underwater, it sounded like everyone was whispering or mumbling.

I started to rely on seeing faces, particularly lips. If I could see lips I could get by. Mostly.

I learned to laugh and smile at the right time, all based on the tone or the sounds I could actually hear. If I was having a particularly bad day I would say thing like “sorry. I’m just getting over an ear infection” or I’d accuse people of mumbling.

More often than not all these things worked and I didn’t need to tell anyone about my hearing loss. Which was good because I didn’t want to tell anyone. I was in my early twenties and losing my hearing. To me it was embarrassing and shameful! I know now it wasn’t but back then it was – to me.

I learned British Sign Language (BSL) and I forgot most it because I didn’t use it and I did all I could to totally ignore the fact I couldn’t hear people.

Image shows a "behind the ear" hearing aid and an purposely moulded ear piece.
A “behind the ear” (BTE) hearing aid and moulded ear piece.

As the years went on my hearing got progressively worse, as predicted, to the point where the audiologist pretty much insisted I got hearing aids.
“Take the hearing aid now because if you refuse again you’ll go to the bottom of a two year waiting list and you’ll need it well before then!” he said.
“Take it so you’ve got it, and just don’t use it if that’s how you feel!” suggested the nurse.

It was explained to me that once I had the hearing aid I could get further appointments within four weeks. Without it I’d be waiting as long as two years.

So, reluctantly, I agreed. The loss in my right ear wasn’t as bad as my left so I only needed the one hearing aid and a few weeks after a mould of my ear was taken I went back and collected my new hearing aid.

It was horrible. It felt like I was holding a giant pink hook. As for being “flesh toned” in colour, well it was as flesh toned as Clearsil flesh toned acne cream – pale orange!

The audiologist put it in and turned it on an instantly my head was filled with sound. It almost felt like he was shouting. I loved and hated it both at the same time. In the car on the way home Brad rang his sister. I could hear her on the other end of the call! Something I’d never been able to do. It felt amazing but it also felt a little weird. Did I now have super hearing? No I didn’t. I had normal hearing, his sister was just loud!

I used this one hearing aid for years until it fell out of my pocket on the drive way and I drove over it. It still worked. Sometimes. Thankfully I was able to get a replacement on the NHS for a fee of £50. We then moved to Ireland and I lost my access to the health service and any more upgrades or replacements.

For as long as it would work I stuck with this new one but eventually it too failed. Only, it wasn’t a failure due to the hearing aid itself but my hearing. My hearing had gotten so bad that the hearing aid was now just jewellery.

Image shows a massive audio amplifier, sold as a heating aid.I spoke to my doctor about getting replacements over here in Ireland and was told I wasn’t entitled yet as we hadn’t lived in the country long enough, so I looked into buying new ones. To replace like for like I was looking at €1500. I wasn’t prepared to pay it so went on to Amazon. I ended up buying hearing aids that were just amplifiers. They weren’t attuned to my hearing, they were just mics with speakers attached in the form of an ear piece. And they were huge.

I got two and I wore them from time to time but they were so big they made me feel very self conscious. I decided I’d rather spend the time saying “Pardon?” or “Can you repeat that please?” than wear this massive chunk of plastic.

I purchased some ‘in the ear’ hearing aids. Again, they were just amplifiers and not the best for hearing loss but if they worked I’d be happy.

Image shows in the ear type amplifiers.
Tiny shit in-the-ear (ITE) amplifiers.

I hated them. They felt horrible in my ears and I had this illogical fear about them getting stuck and me having to go to A&E to have them removed.

I wore them once and never touched them again. Thankfully they were cheap. I still have both of those aids as a ‘just in case’ but thankfully I don’t need them now.

Two years ago, while getting my eyes tested at Specsavers, the clerk said “Do you want a hearing test? You’re eligible for a free one and might be able to get money off hearing aids.” I said yes even though I knew I had hearing loss. She knew this too as I’d spent most of the time saying “Sorry?” or “What was that?” This is probably why she offered me the hearing test.

A few weeks later I had the test and sure enough she confirmed, again, my hearing loss. She then said “I’ve good new and bad news.” I was hoping the bad news was I was going deaf as I was already prepared for the that.

The good news was I was now entitled to free hearing aids off the state so I took them. My hearing in both ears was bad so I was entitled to two aids and they are attuned to my hearing level. I don’t need to adjust them at all, just pop the batteries and go. I love them. They’re tiny, they’re behind the ear, and the work a treat. I can connect them to my phone to make small adjustments if I need to but so far I’ve never had to.

The bad news was she thought I had an auditory processing issue so she wanted to do further tests. I agreed to them and after another thirty minutes of sitting in the booth and pressing buttons, reacting to sounds and repeating her words, she confirmed, as much as she could, that there was an auditory processing delay.

In other words when someone starts talking to me my brain doesn’t pick it up and I only start hearing after a few seconds. As such I miss when people are talking to me. It also means that if there is more than one voice at the same time I struggle to differentiate or work out what is being said. It all just becomes noise.

She said I could have further tests to confirm it officially but they’re only available privately and would cost around €750. She was quite honest and said it wouldn’t give me anything other than a confirmation as there’s no cure, just exercises which, as far as she was concerned, don’t do a lot for most people. I was happy with her diagnosis and still thrilled that I was getting two new hearing aids so I didn’t bother with the further tests.

I wear my hearing aids whenever I leave the house and I love them. I wear them with pride. I still have problems in noisy places but thankfully I have a very supportive husband. We often sign in bars and if it’s noisy he’ll always go to the bar for me. My friends have been supportive too and every little bit helps.

I’ve learned to adjust my life style to suit my hearing. I sit in the place best suited for me in lectures or meetings. I can also use my iPhone and AirPods has amplifiers if needed. I can put my phone in the middle of the table at a meeting and hear everything that’s going on through he AirPods.

image shows all BTE hearing aids
My lovely hearing aids! My robot ears!

I learned Irish and British Sign Language and bits of American Sign Language and use it as much as I can so I don’t forget it. I use it at work anyway so it’s not likely that I will.

Without my hearing aids people, to me, are mumbling so these robot ears are essential. Sometimes I still struggle but I’m used to it and it doesn’t bother me any more. Being deaf has opened up a whole new world of communication. Brad and I can talk in public places and most people wouldn’t have clue what we were saying!

It’s liberating.

To be honest, sometime it’s useful to be able to turn my hearing off.

*I hate that word.

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