Hey Rosey – My Music Festival Story

I was dancing! I was smiling! Some of my hearing loss grief was lifting, and this stifled part of my personality; this love of live music, was being reignited.

The room was small with black dividers forming the walls. It was simply furnished with a black coffee table and, in contrast to the dark surroundings, two white sofas which lined adjacent walls and were pushed together in the far right corner of the room. The air was stuffy and I moved my hair back from my forehead with my hand. Sitting on one of the sofas, I took a sip of my gin and tonic in an attempt to remain composed and to try and coax my fantastically overwhelmed grin to feign a cool smile. A sense of relaxed intimacy filled the air as more people entered the room, and music began to sound in gentle tones. Despite the warm atmosphere, a confused mixture of feelings had taken hold of me: astonishment, excitement, and absolute joy. I was a stranger to this level of attention, this kindness.

At the beginning of this year, I was involved in making a radio documentary for the BBC World Service, which detailed some of my experiences following my sudden hearing loss. During a moment in the recording, I found myself in an emotional situation. I was in an empty music venue and was explaining that I would no longer be able to go to live music events, due to my sensitivity to loud noises; a consequence of my hearing loss. I realised I would never be able to see my favourite band, The National, play live.

Many aspects of life have changed for me since the day I lost full sound. I have found that it is often the small, more personal effects of losing my hearing that carry the most impact. Tiny chunks of my personality have been broken away by some of the cruel repercussions of my hearing loss. When dealing with tinnitus, dizziness, ear pressure and sensitivity to sound, I sometimes feel that my focus is driven away from the things I love; the intrinsic pieces of my personality that make me, me. I have always enjoyed music, in particular going to summer music festivals. This love of music had been repressed; forced into quietness by the accompanying conditions to my hearing loss.

A few months after the documentary recording went live, I was contacted by the National’s manager and was invited to go backstage to meet the band before a show they were playing at MadCool; a music festival in Madrid, where I live. Of course, I was very excited at the prospect of meeting the band. Yet, it was also difficult to imagine this as an experience I would be able to enjoy, or perhaps even tolerate. After all, I had spent almost three years avoiding loud noises and live music events. But, it was a wonderful opportunity and one which I couldn’t refuse. I explained my sound sensitivity issues with the tour manager and was told that, if I felt comfortable, after the Meet and Greet I could watch the concert from the side of the stage where it would be much quieter than the audience area.

The weeks leading up to the event, I was nervous and excited. I was nervous about the festival noise and volume levels. I was nervous about meeting the band. I was determined to enjoy this day as much as possible. I was in a privileged situation and was going to make the most of it, though I knew the day would bring challenges.

As well as having noise sensitivity issues, I have also been advised by specialists against attending live concerts. I needed to ensure that I wasn’t going to be in any position that could cause noise-related hearing damage. And, above all, I needed to feel comfortable. I was going in prepared. I packed a bag with my earplugs and some ear muffs. I was ready.

My boyfriend and I arrived at the festival on a very hot day. The vibrations of the sounds as we approached the outdoor venue caused some pain in my ears; I had forgotten the strength of live music. Luckily, we didn’t have to spend much time in the main grounds of the festival.

After enjoying some time in the artists’ area, the band’s tour manager came to collect us. We followed her as she moved briskly, and within seconds we were walking down a black corridor with labelled doors on either side. I glanced up and read one of the labels: ‘The Smashing Pumpkins’. Oh my goodness! – We were in the artists dressing room area!

We reached the end of the corridor and I stopped for a moment at the realisation that I was about to meet my favourite band. “This is really happening, isn’t it?” I said to my boyfriend. Until this moment, I hadn’t quite believed it.

We turned left and walked straight into The National’s dressing room. It felt like entering a scene from a film. The first person I saw was one of the guitarists, Aaron, standing in the doorway playing his guitar. He greeted me and introduced himself. We were quickly introduced to the other band members and I had a brief chat with Matt, the lead singer. My boyfriend was busy talking to some of the other band members when Matt asked me to sit down on one of the white sofas. He told me to choose a good spot. I didn’t know what he meant by this, so I placed myself to the left of where he sat down (my hearing side) so that whatever happened, I would have some chance of hearing him.

Matt was joined by Gail, one of the female vocalists on their new album, and they were handed a sheet of song lyrics. I read the title: Hey Rosey.

And then, without any announcement, they began to sing. Music played in beautiful acoustic notes and the gentle tones meant that I was able to listen and enjoy it without pain. I thought perhaps the band were rehearsing before going on stage. But, very soon I realised they were playing solely for us. There wasn’t going to be a group of special guests as I’d expected – we were the only ones! This song was ours. I took a sip of my gin and tonic.

When Matt, the lead singer, began to sing I was reminded of a time a few years ago when my boyfriend bought me some new headphones. They were much better quality than I was used to, and to test the sound quality I played a song by The National. The music sounded so clear, almost like I was sitting in the room with them. At the time I commented that it was like a private serenade through my headphones. But, at this moment, I realised it was nothing close.

I tried to take it all in; looking at the faces of the band members, listening to the music, and enjoying the atmosphere. I wanted to be able to remember these moments; sharing this intimate display of creativity.

After the music stopped, I continued talking to Matt. He asked a little about my condition and he commented on how generous he thought I had been in sharing my story through the documentary.

Continuing the theme of the documentary that had brought me to this moment, I asked Matt whether there was a sound that he treasured. He paused for a second. Then suddenly he was visibly struck with emotion. He threw himself back in his chair and held his head in his hands, and replied, “The sound of my daughter giggling…her giggling.”

Soon, we were ushered into a black van and were taken to the backstage area. The stage manager showed us the setlist of songs and explained where we could stand on the stage. I was hoping I would be able to enjoy this, without the worry of hearing damage or sound sensitivity issues.

We watched as the band entered the stage, a few metres from where we were standing. Then the concert began.

I was wearing my earplugs and was able to tolerate the volume level of the music. From the side of the stage where we were standing, the vocals were sometimes difficult to hear, yet the feeling of music dancing through my body filled me with excitement. This energy, I hadn’t experienced for almost three years.

Matt dedicated the song Hey Rosey to me. Unfortunately, I didn’t hear him say my name, but my boyfriend alerted me, and I saw Matt waving. I waved back with unreserved delight. I was dancing! I was smiling! Some of my hearing loss grief was lifting, and this stifled part of my personality; this love of live music, was being reignited. I was filled with exhilaration. I thought I would never be able to go to a live concert again, and here I was, watching my favourite band from the side of the stage like a rockstar!

I have come so far on my hearing loss journey. In the documentary, I spoke about how I was trying to be aware of the sounds that I love, and to not take them for granted. This love of music will always be a part of me, and I hope to be able to continue to appreciate music throughout my life, whatever my hearing capacity. And, if this was to be the last concert I’ll ever attend, rest assured I enjoyed every moment.

Thank you to The National, Shaun Gibson from Straight and Narrow Artist Management, AJ Faber, and everyone else who made our backstage experience so special. Thank you also to Chelsea Dickenson from Audio Always who, without her documentary, this would never have happened. It was a truly amazing experience and one which I will treasure. You have all made my smile brighter.

Click here or below for the dressing room acoustic session.

 

Living with Single-Sided Deafness

I lost the hearing in my left ear through sudden hearing loss in August 2016. There wasn’t a known cause for my hearing loss, I wasn’t feeling ill and I didn’t have an infection. One day the world to the left of me just fell into silence. The hearing loss was profound which means I have no functional hearing in my left ear, and for just over two and a half years I have been living my life with single-sided deafness (SSD).

People with SSD are able to hear through their ‘good’ ear, yet have a profound hearing loss in their other. I am thankful that I am able to hear with my right ear, yet living with SSD comes with its challenges.

Sound localisation is a skill enabled by having two working ears, and so with only one hearing ear, I have no idea where sound is coming from. I might hear some music or a noise, but I don’t know which way to look to see what has produced the sound. Trying to find a mobile phone that is ringing results in me wandering hopelessly around my apartment with my ‘good’ ear leading the way and looking to see if I can spot it, usually ending up back where I started and realising the phone had been next to me all along. Locating a music source is also a challenge. There was one occasion where I was walking in the centre of Madrid, where I live, and I could hear a busker playing the guitar and singing a Bob Marley song. Whilst gazing around to see if I could find the owner of the interesting staccato-type singing I stopped in my tracks with a jump as I almost fell over the person responsible; who was positioned in my path, undetected by my gazing view and lack of directional hearing.

Thinking that all sounds are coming from my right has resulted in some scary instances when crossing roads when I haven’t realised traffic is approaching from my deaf side. It has also resulted in some, in hindsight, comical moments. One day, I was sitting on a seat at the end of a row of seats, on the metro train. I thought that I could hear someone playing the accordion somewhere far down to the right of the train. I was feeling relaxed, and as I tried to focus on the tune that was being played, I saw the woman opposite looking at something next to me. I turned to my left, to where she was looking, only for me to jump up in my seat as I let out a little yelp; startled to see the accordion player was actually standing right next to me, on my deaf side.

My boyfriend automatically walks on my right-hand ‘good’ side where he knows I will hear him. This prevents me from having to continuously turn to face him with my ‘good’ ear, in attempts to catch some snippets of conversation. With friends, who often forget which is my hearing side, or for those who don’t consider it, I place myself on their left. When they inadvertently change sides whilst crossing a road or when they stop to look at something in a shop window, I find myself dancing around them; trying to position myself as quickly as possible back on their left side.

When I’m on my own in everyday places and situations I sometimes feel vulnerable. I worry about crossing the road, and not knowing which direction to move out of the way when I hear the siren of an emergency vehicle. I worry about strangers talking to me, and not being able to hear them, or even worse failing to acknowledge them; if they have addressed me on my deaf side. I unwittingly ignore people to the left of me and often notice a frown on a stranger’s face, presumably because I have failed to respond to them or to move out of their way. I find myself constantly scanning my surroundings; checking people’s faces to see if they show any sign or clue that they are speaking to me.

With single-sided deafness, I find it difficult to hear when there are other noises present. Our brains are responsible for selective listening, which is more challenging without the help of a second ear. In a noisy environment, it is difficult to focus on a single person’s voice. Socialising can be demanding amongst background noise. In restaurants and bars I have learnt to sit in a corner, or with my deaf ear against a wall and my hearing ear facing the person I am speaking to, in order to have some chance at hearing them in conversation. I have learnt that it is only possible to concentrate on listening to one person at a time.

With my single-sided deafness has come tiredness, frustration, loneliness within groups of friends in conversation, and super-sensitivity and hyper-reactivity; meaning I am startled easily by unpredictable or sudden noises. I also have difficulty multitasking and find it hard to perform another task while listening.

Yet, I have found that being able to see some humour and positives, however small, in some of the situations I find myself in, can help me stay positive. For instance, with single-sided deafness, I can block out sound during the night or when having a nap, just by putting my ‘good’ ear to the pillow. I only need to use one earphone when listening to music, and if there is someone I don’t want to listen to, I can make sure they are sitting on my deaf side.

If you or someone you know is also living with SSD, I’d love to hear from you. Please feel free to leave a comment and share some of your experiences.

 

This article was recently featured on The Limping Chicken – the world’s most popular deaf blog! 

How to Talk to People with Hearing Loss

I was recently contacted by Julia Florentine who has just published a book with her mum and her colleague. The book is for friends and family of people with hearing loss on how to communicate effectively and is entitled “How to Talk to People with Hearing Loss“.

The purpose of the book is to explain what people with hearing loss find useful from their communication partners so that the reader can learn to be a better communicator. It aims at helping people to understand the communication difficulties people with hearing loss (in particular, age-related) may have, so that they are equipped with the tools to speak more effectively with someone without full hearing.

Although my hearing loss isn’t age-related, I can still identify with the information in this book and think the tips would be relevant to communicating with someone with any form of hearing loss.

Among other things the book outlines ‘Two Major Myths About Hearing Loss’, ‘Five Most Common Questions Answered’ and ‘Ten Tips for Effective Communication’.

The section I found most relevant to my needs was ‘Ten Tips for Effective Communication’.

I’m sure with different types of hearing loss, the weight of importance will be concentrated on different areas, yet all points carry significance. The main tips that I would like people to know are 6, 7, 8 and 10:

6. If I do not hear you the first time, repeat with different words. Don’t say the same word I did not hear over and over again.

7. Try to limit or avoid background noise. I do not hear well in noisy environments.

8. Talk to me on the side of my better ear.

10. Hearing under adverse conditions can be exhausting. Sometimes, I need a break.

The book doesn’t just provide the tips, it also examines them; suggesting and explaining helpful actions.

I’ve been thinking about the information highlighted in number 10 regarding listening fatigue and realised that this is something I haven’t really talked about to anybody, apart from those who are close to me. I think the reason for this is because there are many other points that I feel others need to know. In particular, I inform people of my hearing side and the fact that I may need to sit close to them to hear them and to watch their lips for clues. I try to make sure I tell these two pieces of information to anyone who I will be having a prolonged or regular communication with. These details are conveyed for practical reasons. The fact that I am tired, doesn’t seem essential to explain.  It seems more like a personal detail.

Yet, the effort involved in listening can be very demanding. Even just meeting with a friend for a coffee can leave me feeling exhausted, and I often have to go home afterwards to lie down and rest my ears and brain. A great amount of concentration is needed to hear the main aspects of a conversation, to process this information, whilst trying to focus on keywords over background noise. It can be tiring attempting to keep up with the change in context, at the same time as endeavouring to hear questions; striving to give appropriate answers. During any conversation, I continually urge my tinnitus not to steal my attention, I deal with sound sensitivity issues, and all the while trying to look at ease with the situation. And so, it is not surprising that trying to follow a conversation, let alone joining in with it, can be quite a mission for someone with hearing loss.

I am aware that people with hearing aids may turn them off when they get home after work or being in a noisy environment, and this allows them to rest their ears and takes away the pressure of trying to listen or respond to conversation. I am quite envious of this. It must be a relief to be able to tune out after being around noise all day. Similarly, I often wear an earplug in my hearing ear when carrying out noisy tasks, such as washing dishes – this gives my ears a rest from noise.

I found it interesting that the point about listening fatigue had been included in the book, as it is not really a tip, but rather an insight into life for someone with hearing loss. It is a point that I would like others to know about me, but one which I rarely voice. I would like people to know that it is an effort to converse. Unlike some issues related to hearing loss, everyone can relate to feeling tired. Perhaps this understanding and awareness could promote empathy.

If you would like more information about the book, it can be found on Amazon, through the following links:

UK: http://bit.ly/hearinglossbook

US: https://amzn.to/2HzgBXd

Spain: https://amzn.to/2w6Yp1W

I hope Julia’s book will help enable more effective communication between those with hearing loss and their communication partners.

Follow the Yellow Brick Game

After waiting a few minutes while the results of my initial posturography test were recorded I was asked to play some more ‘games’. I assumed this was the beginning of the vestibular rehabilitation. I was hoping this therapy would help train my balance system to manage the feelings of dizziness I was experiencing everyday.

This time there were only three bricks on the screen, arranged in a V-shape. Again, one square at a time changed from red to yellow, and I had to make my stickman move into the square that was, at that moment, yellow. The movements were simpler than they had been in the test, and the position of the yellow square appeared predictably; moving around the V-shape in a clockwise sequence. The ‘game’ was repeated, this time with the yellow bricks appearing in an anticlockwise sequence. Next, the metal plate I was standing on was programmed to be more sensitive, and the ‘game’ was played again, this time with lots of swaying, trying to keep my balance whilst controlling my stickman.   Then, all these ‘games’ were repeated but with the bricks forming an inverted V shape (like the capital Greek letter Lambda). When the plate was moving with increased sensitivity, I felt a little sick, and my stickman soared clumsily across the screen; dipping in and out of the target brick, like a staggering drunk trying to walk along a straight line.

I was asked to exit the booth and the nurse took the harness off me. My legs felt weak and wobbly and she held my shoulders to support me.  I put on my boots and was told to sit back in a chair so that I was comfortable. The nurse turned off the lights and the room relaxed into darkness; apart from a slither of natural light peeking from behind the window blind.

Across the room, opposite where I was sitting, was a thin tube about a meter long, and supported in a vertical position by a clamp.  Inside was a small red LED light which moved slowly up and down the length of the tube. I was instructed to follow the movement of the light with my eyes. I’m not sure how long I watched the light; the passing of time became difficult to judge whilst concentrating. It was perhaps only a few minutes, and my eyes started to merge the image of the red light together with its black surroundings, losing visual focus. Next, the light clamp was loosened and the tube was rotated into a horizontal position. I watched again, this time, as the red light moved from side to side.

Next, the nurse turned on what looked like a children’s bedside lamp. It was a black, short cylinder-shape. The face of the cylinder that went all around the lamp was decorated with a rubrics cube-type design. Small square lights of red, yellow, blue and green were arranged in two rows of repeated patterns. When the lamp was switched on it started to revolve slowly and I was asked to look at each green square light. My eyes focused up and down as the lamp turned, following the positions of the green squares. Then I focused on the other colours one by one; observing around 12 repetitions of each colour.

Finally, I was shown some exercises which I would need to carry out twice daily. I stood, with a chair in front of me as support, and looked at myself in the mirror opposite. The nurse stood behind me so I could copy her actions, from watching her reflection, as she demonstrated the exercises. The exercises focused on moving my head in different directions first with my eyes open and later with my eyes closed.

For two weeks I completed a half-hour session every day; harnessed into the booth, followed by a 15-minute calm-down period watching the lights. I started to learn more about the ‘game’ and the rehabilitation process. I realized there were different difficulty levels for the yellow brick ‘games’. The metal base, on which I stood, could be programmed to be different levels of sensitivity so that a higher sensitivity setting meant that a small shift of weight could make the cabin move quickly. Sometimes I would start on 40% difficulty and work my way to 70% during a session. Sometimes the red bricks were further apart, and there were varying amounts of bricks. Some of the ‘games’ involved my stickman moving back and forth between just 2 bricks, and other times there would be 8 bricks, all separated. Each brick remained yellow for 10 seconds and each level lasted for 5 minutes. After two weeks of intensive therapy I was assessed again; completing a test similar to the initial platform posturography.

I would return in a couple of weeks for one final session, followed by a consultation with a specialist to discuss the progress I had made and also to talk about the results of my vestibular tests.

Human Pong

I arrived at the health centre on a Monday morning to begin a two-week course of vestibular rehabilitation. I wasn’t really sure what to expect and hadn’t done any research about the procedure online, before turning up to my appointment. I was feeling optimistic, as I had read stories about others who had benefitted from this type of therapy. Before starting the therapy, I would be doing a Computerized Dynamic Platform Posturography test. This test can be used to assess and evaluate the relationship between the three parts of the balance system; the inner ear, vision, and the sensors in the muscles and joints.

A nurse greeted me, and I followed her into a small room. She asked me to remove my boots and then inquired about my name, age, height, and whether I had been in the health centre previously.

Next, I was asked to stand up and the nurse began to attach a safety harness to me. I put my arms through the main part of the harness, like a waistcoat. She fastened it at the front and then secured another part between my legs; pulling the loose end of the strap tightly. I was then asked to walk into an open-backed grey booth. The nurse clipped thick metal clasps – similar to the kind rock climbers’ use – through the two loops of the harness, close to each of my shoulders; connecting them to two straps that were hanging from a horizontal pole at the top of the booth. She then helped me to position my feet, slightly apart, on the metal plate at the base of the booth. I stood, wearing only socks on my feet, my body strapped into place inside the booth; quickly realising the coldness of the metal plate, and feeling slightly vulnerable, yet also intrigued as to what was going to happen next.

I was facing the inside wall of the booth, and in front of my eyes was a blank screen, slightly smaller than an A4 piece of paper. My first task was to focus on the screen with my eyes open, keeping my balance. I assumed a computer was recording any shift in my body weight as I endeavoured to remain steady. Next, I had to close my eyes. I could feel my body sway as I went into darkness. I then had to open my eyes again, and within a moment I felt my surroundings move. The metal platform and the booth walls moved slightly and I was asked to maintain my balance. I was aware that the nurse was standing behind me during the entire procedure, and in addition to the harness that was fastened securely, I knew her hands were ready to support me if I fell. I then had to close my eyes again whilst the plate or the booth, or maybe both (I wasn’t sure) was moving. It was difficult to keep my balance and I stumbled slightly. Finally, I was asked to open my eyes again whilst the plate was moving. On opening my eyes I felt a wave of dizziness, but nothing too severe.

Next, the screen in front of me was switched on and a stickman, enclosed in a line square, appeared on a blue background. The nurse explained that I was the stick man; when I moved, so did the little man on the screen! The movement seemed to be controlled by my leaning and the pressure my feet were applying to the metal plate. There were numerous ‘jeugos’ – she described the tests as ‘games’. The concepts were simple, and the first ‘game’ resembled something very similar to a human version of the old Atari computer game, Pong. A circle – I imagined this as the ‘ball’ – moved predictably across the screen, back and forth between two vertical lines – the ‘players’. The aim of the ‘game’ was for me to follow the movement of the ‘ball’ with my stickman body. The ‘players’ unlike in the original Pong were stationary. I swayed from side to side on the metal platform, trying to keep on course with the ‘ball’. This was more difficult than I’d anticipated, and my stickman body flew around erratically for a few shots before I was able to control my movements and balance well enough to roughly follow the ‘gameplay’. Just as I thought I was getting the hang of it, the speed of the ‘ball’ increased so that it was being ‘hit’ between ‘players’ at a much faster pace. Again my stickman body was flinging itself all over the place, and I found it difficult to keep up with the ‘ball’. This Pong-like ‘game’ was repeated so that the ‘players’ changed positions and were represented as horizontal lines at the top and bottom of the screen with the ‘ball’ and me moving upwards and downwards with each shot. The final Pong ‘game’ was played whilst the platform made some movements which of course made it more challenging.

Pong

The final ‘game’ comprised of basic red and yellow-coloured squares that looked like representations of bricks. Eight squares were arranged in the centre of the screen, together forming a rough oval shape. All the squares started off as red, apart from one that was yellow. This square would remain yellow for 10 seconds before changing back to being red. The consecutive square in the oval shape would then turn yellow for 10 seconds before changing back to being red, and so on. The aim of this ‘game’ was to move around the oval shape, with my stickman body, to each consecutive yellow square. When the ‘game’ began, an off-balanced wobble of my legs caused the stickman to be launched again wildly across the screen, before I managed to take more control. The movement of the metal platform beneath my feet caused the sensation of being on a boat that was very sensitive to movement. The more I swayed towards the yellow squares, the more the surrounding booth moved, making me feel unbalanced; causing unsteady movements of my stickman. I played the ‘game’ to the best of my ability, though it was difficult to maintain position inside the squares, and my stickman swayed around the perimeters; dipping in and out of them. With some time, however, my confidence and ability increased and I started to feel competitive. The ‘game’ was repeated, with the yellow square moving around the oval shape in the opposite direction, and again with more sensitivity and movement from the foot-plate.

vestibualr rehabilitation screen

 

Once the ‘games’ were completed, the nurse printed some results. I saw some sets of bar graphs and values on the screen in front of me, but they weren’t discussed. I was told to stand still and wait a moment. I supposed these results would inform the doctor as to how well my balance system was functioning, enabling them to tailor the therapy to my needs.

Hearing Me – A Documentary for the BBC World Service – Now Available to Listen to!

BBC World Service

It’s been two and a half years since I suddenly lost the hearing in my left ear, and today I am celebrating all I’ve achieved since my hearing loss.  Thanks to the BBC World Service, I am very happy to share this glimpse into my life without full sound.

Hearing Me is now live to listen to! Please note, a transcript is also available through the same link – just scroll down the page to download:

https://www.bbc.co.uk/programmes/w3csynqv

Another big thank you to Chelsea Dickenson (Audio Always) who spent 4 days following me around Madrid with a microphone, and who showed me just how much energy and attention goes into making a radio documentary.

Please take a few minutes to listen and share. Thank you 🙂

Hearing Me – A Documentary for the BBC World Service

BBC World Service

Something exciting happened last month!

I was involved in making a radio documentary for the BBC World Service, which describes some of my experiences of living with hearing loss and tinnitus, and also reminds us not to take our hearing for granted.

I feel so lucky to have had the opportunity to take part in this, and to be able to share my story.

Hearing Me, is now up on the BBC World Service’s schedule: https://www.bbc.co.uk/programmes/w3csynqv

The documentary will be played several times so that people in different time zones can listen to it. You can find these by clicking ‘more’ below the programme information.

Afterwards, it will be available online through the same link as above, and it will also be part of their ‘The Documentary’ podcast series: https://www.bbc.co.uk/programmes/p02nq0lx/episodes/downloads

Please note there will a transcript to enable listeners to follow the dialogue.

A huge thank you to Chelsea Dickenson and Audio Always for creating such a personal and creative piece, I absolutely love it, and hope my readers/listeners (!) all do too!