Hearing loss and me

It has now been 1,145 days since I lost my hearing as a result of the surgical removal of my acoustic neuroma brain tumour. Some days I’m ok with that. Others I’m not.

Pre diagnosis, one of my roles was school music lead. I taught violin and ran the school choir and samba band. It was hard work, but I loved it. Music was a huge part of my life. I would sing along to anything from the Spice Girls to traditional flamenco in the of the car. In the privacy of my conservatory, I would spend endless hours playing classical violin sonatas. I used music as my mood enhancer. It worked.

On 12th May 2018, all that changed. Suddenly. Those first few days, I was alone on HDU, cocooned in compression bandages and dressings, so it wasn’t really noticeable. Besides, I had a hole in my head, squealing tinnitus and a splitting headache, so listening to music really wasn’t a priority.

There have been many ups and downs since that day. Currently, I’m feeling down about it. During a hike last week, we were talking about music and favourite classical pieces. It was mentioned that I’d played for Chester Philharmonic and I shared what an amazing feeling it was to sit in front of the conductor, listening to the sounds being created around you, all blending together and crafted into beautiful music… well, it was once we’d mastered our parts! We chatted about the beauty of symphonic poetry.

Now I find myself profoundly deaf on my left side, with at times what can only be described as debilitating tinnitus.

“But that’s ok, you still have one working ear, what’s the problem?”

Where do I start with that one?

To be profoundly deaf on one side means that I no longer have any directionality. You could shout me from across the street, and unless you were waving frantically at me, I wouldn’t know where the sound was coming from. This has totally knocked my confidence when it comes to cycling on roads. If I’m unable to see ahead of me, for instance if there are high hedgerows, then I cannot tell if the sound of a car is in front of me or behind me. By the time I get where I’m going, my wrists hurt like hell because I’ve been gripping the bars so tightly and my heart is beating out of my chest.

When I come home and shout, “Hi everyone” I have no idea where the responses are coming from. Occasionally, I’ve had the shock of my life as I walk into the kitchen only to find my son, who I thought had shouted to me from upstairs.

Just this evening, I could hear a fly buzzing around my living room. Could I tell where it was?

Trying to focus on what one person is saying when more than two others are speaking? Forget it. This is why the hills and mountains have become my sanctuary.

And music, particularly classical, well it just sounds so different to me now. Pieces I once loved, and still do love, have little depth and the texture is missing. Oftentimes, I find myself struggling to hear sounds and melodies that I know are there and that I should be hearing but can’t. It becomes too painful, so I turn it off and instead sit in silence.

Last weekend, I found myself listening to Ma Vlast, by Smetana thinking of the time I played it with the philharmonic. How we would frustrate the conductor when we failed to get the pizzicato ‘plink’ in time during those the first few bars! It was hilarious. They were wonderfully fun times…

I loved that I played second violin. To my right I had the first violins, to my left violas, cellos and double basses. Then of course brass, woodwind and percussion behind. It’s a miracle I didn’t go deaf years ago!

I turned up the volume, only to be told it was too loud. I turned it off. I found myself reading about this beautiful piece.

What I didn’t realise is that this Czech composer, pianist and conductor suffered from both deafness and tinnitus. “Unlike Beethoven, Smetana had 50 years of normal hearing, but once becoming deaf, he shared the ability to compose in his head. He produced some of his most beautiful and moving music during the last decade of his life…” (Mango).

The deafness, possibly exacerbated by his ill health generally, came on in the 1870s. In July 1874 he suffered from blocked ears and dizziness. By that October he was completely deaf. Smetana could only communicate by writing and when he spoke, he shouted. He said, “If my disease is incurable, then I should prefer to be liberated from this life.” (Large).

Smetana’s description of his tinnitus as “a pounding and intense hissing in the head, day and night, without ceasing, as if I were standing underneath a huge waterfall” resonates with me.  His first string quartet, From my Life, included assonant high-pitched notes in to mimic this tinnitus noise.  His life ended tragically in the Kateřinky Lunatic Asylum.

So yes, at this moment it is a problem but I hope that one day I can learn to ‘accept’ my hearing loss, embrace it even, for making me who I am. Right now, though, that is a long way off and my only comfort comes from knowing I am not alone.

Published by Sara C

It's hugely important to raise more awareness of brain tumours and the implications they can have on patients' lives. I aim to help to create wider understanding of the effects brain surgery and a diagnosis can have on an individual and their families on a emotive level through my own experience.

2 thoughts on “Hearing loss and me

  1. Hi Sara. Your blog has really resonated with me. My hearing loss and acoustic neuroma happened the opposite way around and I’m just at the ‘watch and wait’ stage with the neuroma.
    My profound hearing loss in my left ear happened overnight and I am a music teacher. There are many frustrations listening to music now, teaching it when I can’t hear the subtleties I need to hear (and my brain struggles to catch up with what it has heard) and also the constant tinnitus. The tinnitus is especially hard to deal with when I sing and I’ve had to learn how to sing in tune again. I worry about when all music making activities restart as I take 3 choirs and an orchestra – will I ever be able to manage that again?

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