The sound of music upon my injured ears

So I’m sitting here at home on another summers evening. Keeping busy as usual. Not thinking of what I might have been doing had my life not fallen to pieces from this stroke of difficulty that fell upon me. Not thinking about Glastonbury or all the festivals that I might have danced at had my body not been so drastically injured by this passing invisible unknown thing that, randomly, deliberately or cruelly chose me.  I’m not thinking about how long this might go on for or how I will live a life I want to live without my hearing or inner ear balance or with this awful metal on metal screeching sound in my head.

I decided today that since my hearing has fluctuated, I should not waste any opportunities to listen to music (just in case there is any further decline in future).

If you had asked me before what pastime gave me the most pleasure I would have said music. I was born singing and as soon as I was old enough was playing with records and tapes, recording sounds over and over each other to create music. I learnt flute at school, taught myself guitar as a young teen and then ditched them both for turntables once the dance music scene took me over. I’ve always loved singing but my voice got pretty ruined by 20 years of smoking. I’d always promised myself that if I could quit smoking I’d treat myself to singing lessons.By the time I quit I felt I was too old to start from scratch.

It’s always been one of my biggest regrets that I didn’t do anything with my love of music. About 2 years ago I treated myself to the most beautiful and sweet sounding Breedlove guitar. I fell in love with this particular guitar as soon as I heard it. I yearned for it for a whole summer and went to visit it in Denmark Street so many times that eventually the shop keeper took mercy on me and let me have it with a discount. Unfortunately years later it’s been sitting untouched on its stand. Life got busy with work, boyfriends and other necessities and I’ve been waiting for a quiet time to devote to it.

I’m certainly no songbird, and never really honed skills in any instruments…but nevertheless, music and singing is a pleasure to me without comparison. And so as my hearing deteriorated over the past 4 months, and sounds have became increasingly distorted, I’ve become scared of listening to music and it sounding really awful as then I’d have to face the loss of something so deeply precious to me.

And so I decided tonight for the first time in 4 months, to be brave, and try to listen to some music.

Although the quality is lost, I can hear music when it’s streamed straight into my hearing aids. I cried a lot – because I feel both blessed to be able to hear music at all, but also because I’m so sad that the quality is so awful. Because I am profoundly deaf in the high frequencies, music is distorted and compressed. I’ve lost the quality, the roundness, the smoothness. What I hear is probably a bit like the sound that comes out of speakers you’d buy in the £1 shop – crackly, edgy, tinny. … But I can still hear enough to enjoy the song if it’s straight into my aids.

But I don’t see how I’ll ever enjoy listening with other people as the music would have to be really loud for me to hear it through speakers.  I worry it will sound like the TV – fuzzy, undefined, noise that I cant quite make out. Every situation where there is music playing in the background is going to be uncomfortable for me as I will be excluded from the mutual enjoyment of it and instead have to tolerate its distortion. I didn’t try playing music through my speakers tonight as I have no sense of volume and don’t want to wake the street. I’ll try tomorrow with a box of tissues and update here.

I know there is a lot worse that could have happened. There are far more people that have more significant things to be sad about. But to me, who’s life is now monk-like, unable to go out and be with people because I either hear too much or not enough, my loss of hearing and my loss of music is my sadness tonight. Tonight I play the blues for all that has been lost these past few months – for my partner in crime who left without even so much as a goodbye, for my desirability, freedom, ability to walk, drive, run, dance, hear, listen, respond, communicate, mix and merge in the world.

I’ve done so so well. People I meet compliment me on how well look and how positive and chirpy I am despite whats happened. I really feel I’ve coped amazingly. Tonight I allow myself a little crumble. There is only so long I can be in denial of how much I have lost. My life as I knew it has been taken from me and I’ve no choice but to start again…learning how to live with my poor injured ears in a world.

Here’s a song for us. Ray Lamontagne soothes my soul and I hope he soothes yours to.

I’d really love to hear from others with sudden severe hearing loss. There must be ways of managing to still enjoy music? So far there haven’t been many deafened people respond to my blog and I certainly haven’t come across any people who have experienced it as quickly as me in both ears. Anyone else out there been/going through this experience?

Invitation to guest blog your experience with labyrinthitus, hearing loss or vestibular issues

I’d like to open up a space on this blog for other people to share their experience with vestibular issues, labyrinthitus and hearing loss. It can be so isolating as the people around us don’t understand what we are seeing, feeling and hearing. Personally I so appreciate connecting with others who have had similar experiences and so understand. Its particularly uplifting to connect with people who have succeeded in getting back to ‘normal’ life.

You are invited to write your story here which I will publish as a Guest Blog Post. Continue reading

Small things to remember when you are ill

1. This is not forever

It feels like this has been going on forever. It feels unbearable – the pain, discomfort, restriction, isolation, helplessness and loss of who we were and life as we knew it. The truth is that we don’t know the future nor how long our healing will take, but its not likely to stay this way forever.

We have to be patient and allow the healing process to take place. This is just today, not for the rest of our lives. Lets just get through this day and this week as best we can and not try to prophesize or catastrophize the whole of the future.

As Shakespeare said “There is nothing either good or bad, but thinking makes it so”. Try to pull back from the thoughts which want to distract us from the present moment.

Continue reading

Week 15 – My miserable week

My family wanted to take me out last weekend so I agreed to brave a restaurant to see them. I searched out a place that would be carpeted, spacious and quiet to lessen the impact of background noise on me. Luckily I chose well and the restaurant was quiet and empty. But even still it felt so difficult to hear anyone speak because as soon as more than one person in the room talks I cant hear a thing. It’s like my hearing aids just cant distinguish the voices and mashes all the sound up into one noisy rumble. So much of my understanding now depends on the visual element of communication that I can’t keep up on conversations other people are having because I cant see everyone’s faces clearly. It’s disheartening. I feel so lost in this new world without my natural hearing – everything sounds so distorted, harsh and distant. Its such a struggle to deal with the noise, deafness, tinnitus, imbalance and oscillopsia that I pretty much want to just stay home.

Continue reading

Week 9-10 – Brain scans, sudden hearing loss and the NHS

By now I had got myself a Sonido Listener to get by in the world. This is a handheld electronic device which amplifies sound. It has an inbuilt microphone at one end which you point at people to make them feel important, and a headphone connection the other end which you hear them through. Whilst it no way makes up for lost hearing, it definitely improved my ability to hear others in a one-on-one situation; saving them from having to shout. The downside is that you are constantly connected to a machine and wires so its not a long-term solution. I can Continue reading

Month 2 – The Dizzy NHS

I don’t know how to describe the feelings you have as you begin to notice all the ways in which you can’t hear; all the ways in which you’re now excluded from life which is lived interdependently with others. It’s like permanently being the one who didn’t get the joke whilst everyone else is laughing. It’s isolating and if you are going through that, I feel for you and I understand. I’m sorry for your loss.

Continue reading

Week 4 – Sudden Hearing Loss

This week I found out that any sudden, noticeable reduction in hearing should be treated urgently as a medical emergency. It should be treated with the same importance that sudden blindness would be. So how come this is not the case in the UK’s NHS?  In order to have a reasonable chance of saving someones hearing, high dose corticosteroids (either tablet or injection) need to be given ideally within 72 hours (but also can be effective up to 1 month). Why do I observe that this is happens for people abroad but not for us in the UK?  

Continue reading