Lizzie Ward: What it means to have Musical Ear Syndrome

One thing that has always intrigued me about my experience of being deaf is the question of my ‘musical tinnitus’.

Tinnitus can be anything from a persistent ringing sound, to voices, singing or sirens inside your head/ears. I have never really been told what exactly tinnitus is, to be honest. On the British Tinnitus Association website, it is referred to as sound in your ears without any external stimuli.

There is no known cause of tinnitus – although exposing your ears to extremely loud and persistent sounds without protection (ear plugs/headphones for example) can be a cause. Tinnitus is often present with deafness.

For as long as I remember, I’ve always had a series of ringing noises, whether high or low, marching a symphony in my head.

When I was young, these sounds often made it difficult to get to sleep. I had an overactive imagination (I still do) and would watch The Lion, The Witch and the Wardrobe and have real trouble drifting off to sleep – not to mention the terrible time I had after repeated watchings of The Neverending Story! The tinnitus would amplify my fear and I would listen to the pitch get louder and louder until I couldn’t bear it any longer and would leave the darkness of my room to the warm yellow light of the sitting room and my parents.

At one point, someone suggested that I try a series of ‘healing’ sessions with a local man near where my Gran lived. I didn’t understand the whole thing at the time, and thought it was just like a relaxation session or something, but I think what actually happened was that he tried to ‘cure’ my tinnitus by holding his hands over my ears. I thought it was a good opportunity to get a bit of sleep, but I think he got wise to that eventually. I also found it very difficult to sit still and be patient. It was a whole load of ridiculousness, but it also fed my fear of the ringing in my ears.

My introduction to Michael Jackson completely changed my relationship with the sounds in my ears. I would absorb and learn his music and I found that when I wasn’t listening to his music, I could ‘tune’ the noises in my ears to sound like something resembling, for example, Billie Jean or even Thriller. Then when I started to learn his lyrics, in they would pop, becoming a veritable rock concert in my head. There was often no need for a Walkman (remember those?) or stereo.

Then the much loved geeky theme tunes would make their debut. Star Wars – that arrangement much loved by Sci Fi addicts. The way I learn music, by repeated listening, watching of subtitled videos on YouTube, reading of the lyrics – means that I learn a song or piece of music by heart and that is perfect for the noises I hear in my head. My brain seems to memorise songs and then use them as my own personal iPod.

From my research, I’ve only found a few references to this – Musical Ear Syndrome. I had a comment on my blog post about music that made me look it up and read about it. Usually, it occurs to people who experience late-onset deafness or people who go deaf in their twilight years. This makes me wonder, do younger people who have this talk about it? I asked on Twitter a while ago but didn’t really get any answers. My sister also has tinnitus but not Musical Ear Syndrome.

There are also some discrepancies – why can I ‘tune’ my tinnitus? Surely if I have ‘musical hallucinations’ it would come out of nowhere rather than me actually tuning the noises to my favourite or random songs. If myself and the commenter (Aw Diddums) both have this experience with tuning our tinnitus to music, who else does? It would be a fascinating thing to understand. It feeds into the human relationship with music.

When I went to see Lost and Sound, Lindsey Dryden’s film exploring deafness, music and the brain, it made me wonder what the neuroscientists would have thought about my tinnitus and musical tuning. What would they have made of my relationship with music? As Professor Nigel Osborne says in the film – deaf people engage with music with all their senses, and everyone, hearing and deaf, has a different way of listening.

The fear that I felt when I was a child, the sirens and the wailing, the rising of pitch, is still on the edge somewhere. Sometimes, when I’m alone and it’s dark, having read something particularly disturbing (I blame Neil Gaiman, mostly), I feel my heart pound and the pitch reaches a crescendo.

Mostly, though, tinnitus is an old friend, a musical orchestra, something that entertains me – reminding me of how much I love music. At times, though, it is annoying, something of a pest, when all I want is some quiet. When I wear my hearing aids, sometimes it goes away. Yet when I remember I’m meant to hear ringing, it starts up again. My damage limitation is either to ignore it, listen to something – music, TV – or, yes, tune it. You can while away a journey by staring out the window and listening to the Star Wars theme tune…

The Limping Chicken is supported by Deaf media company Remark!, provider of sign language services Deaf Umbrella, the Deaf training and consultancy Deafworks, the RAD Deaf Law Centre, and BID’s upcoming 5th anniversary performance by Ramesh Meyyappan on 12th October – don’t miss it!

Lizzie is a cupcake baking, rock loving, blogging, writing, scrapbook making, theatre going, sci fi and fantasy obsessed geek-feminist. She is passionate about access to the world for deaf people and is clinging to the hope of peace, love and music. And libraries. Check out her blog, Cats and Chocolate and follow her on Twitter as @destinyischoice