Author: myhearinglossstory

Hi, My name is Carly. I am 37 years old and I am currently living in Spain. I am originally from a small seaside town in Yorkshire called Bridlington, and have also lived in China and Thailand. I am an Early Years primary school teacher, and have been teaching for more than 12 years. I love walking in the countryside, getting lost in Madrid, going out for breakfast, taking photos, listening to music, storytelling podcasts, baking, running, drinking wine, and eating spicy food. In August 2016, I experienced sudden sensorineural hearing loss in my left ear. I started this blog as a way to inform my friends and family about my progress, for anyone else who is going through a similar experience as me, or for anybody who is interested in learning about this type of hearing loss, and the way it can affect everyday life.

Grieving My Lost Sound

I felt guilty for feeling sad. I was swallowing down grief in giant gulps, trying to dismiss complex emotions. The pragmatic part of my character knew there were much worse challenges that life could present to me.

It has been just over three years since my sudden hearing loss, which left me profoundly deaf in my left ear. The months following this loss were spent hoping for some recovery. I was optimistic about the possibility of learning invaluable pieces of information from every specialist I met, and was hopeful concerning each new treatment or therapy I tried. Though, these months were also full of frustration, anger, sadness; difficult feelings that grasped at me with all their strength, making each day a duel to be fought. Now that three years have passed, and I am confidently dealing with the practical effects of hearing loss, I can look back at this experience with clarity and more understanding about the emotional impact this loss has had on my life,

During the time immediately subsequent to losing my hearing, I didn’t allow my grief to consume my attention. In truth, I don’t think I even realised I was grieving. Instead, practical issues dominated my thoughts. I was productive and proactive in learning how to function in my new unanticipated state. I wanted to take control of my situation. I focussed on dealing with my noise sensitivity and tinnitus. I gradually learnt to cope more with everyday sounds. I set myself small targets to work towards and celebrated my accomplishments. I started to go outside and surround myself with difficult sounds, progressively increasing the exposure time with each day. I discovered where the best places to sit were in a restaurant with regard to limiting background noise, and learnt how to direct my hearing ear towards sources of conversation. I realised the power of subtitles, which enabled me to access all the dialogue when watching films and TV series. My boyfriend, and close friends and family learnt to walk on my right-hand side so that I would be able to converse with less effort. I began to study the movement of peoples’ lips to help me make sense of speech in noisy environments. I learnt my physical limitations. My emotional health, however, I didn’t even consider.

Hearing loss grief is something that medical professionals didn’t talk to me about. No recommendations were given for support groups or information sources. I’m not sure if the absence of emotional guidance was due to the language barrier, or if it generally isn’t offered to patients here in Spain. Perhaps those affected by hearing loss are expected to search for the type of help they feel will be the most effective for their situation. I haven’t widely verbalised my feelings of the different stages of grief I underwent following my hearing loss. Only those closest to me know the sadness I have felt. In fact, the impact of my hearing loss grief, and the importance of dealing with it in order to move forward in my hearing loss journey, is something that I’ve only recently started to pay much thought to.

There are so many different types of hearing loss, all that come with their own challenges and strains of grief. I wonder if having the time to prepare for the known gradual decline of hearing with age or a health condition brings any comfort. Yet, knowing loss is imminent must also present a tremendous burden. My hearing loss was sudden. I had no time to prepare. I had very little understanding of the practical issues regarding hearing loss. I had no awareness of the mental pain hearing loss could bring,

Then, several months after my sudden hearing loss, I was given some advice from a stranger, who I had briefly connected with online. I was told that, as with any other loss, I would need to grieve my lost sound with the attention it deserved. This advice proved so important in helping me address the emotional aspects of my new situation, and immediately made it feel acceptable for me to feel sad and allow myself to begin the process of grieving.

I suppose everyone with hearing loss will experience different emotions and stages of grief, and will deal with them in their own unique ways. I had periods of feeling angry. I was angry because I felt that I could no longer rely on my body; it had failed me. I contemplated the fragility of life. I felt sadness, isolation and exhaustion from missed words in conversations, that used to be so easy to follow. I continuously questioned my feelings as to whether they were a justified measure of grief and then learned to treat myself with more kindness. The acceptance, which took time, came ultimately when I sought a second medical opinion, and I was told bluntly by a specialist that it would be very unlikely that I would regain any hearing and that this was my new normal. I needed this closure.

I found the most help through my grief by talking to my boyfriend, who provided unfaltering support, strength, and compassion. I confided in him, explaining my feelings and new hearing sensations. We shared the experience of loss so closely and we found our own way to deal with these new circumstances together. I also reached out to others through writing about my hearing loss journey in my blog. I corresponded with people who were going through similar situations, and continue to encourage this communication. I now find comfort in being able to offer my advice and share experiences with others. Hearing loss grief remains one of the main topics of discussion.

I am reminded of my lost sound every day. Our senses play a significant role in how we engage with the world. For people, like me, who are accustomed to living in a ‘hearing’ world, our sense of hearing determines how we enjoy music, how we recognise the voices of our friends and family, and how we interact socially. I don’t want to forget life before my hearing loss and I consciously hold onto memories of past experiences when having the full ability to hear made these times so special – times spent enjoying music festivals and memories of past holidays, when my hearing or noise issues didn’t even need to be considered.

I am proud that I carry a tiny piece of my hearing loss grief with me; an invisible scar. Like other scars on my body – shadows of scuffed knees from playground games, teenage acne, and surgical scars – I regard it with pride. My scars are evidence of victories over health issues. They are evidence of healing. My scar of hearing loss grief is something I acknowledge every day. Yet, it’s much more than grief or sadness; it’s a little bit of strength I take with me everywhere. My hearing loss grief is part of my story.

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

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Exciting News! – My Hearing Loss Story is Now on Facebook!

Please take a moment to Like, Share, Follow, and Comment!

Dear readers,

I’m excited to tell you that I have recently created a Page and a Private Group on Facebook for my blog! Information about both of these new features is outlined below.

The Facebook Page

This is simply a page where you will be able to view my blog posts. Anyone can access this page and I am hoping that making my blog accessible to Facebook users will mean that I can grow a wider audience for my writing.

To view the My Hearing Loss Story Facebook Page, please follow this link.

The Facebook Private Group

This group is not only for readers of my blog but is for anyone whose life has been affected by hearing loss.

I hope to develop a community of people of all ages, from all over the world, and with different types of hearing loss. This is a space where you are invited to share your own hearing loss stories, ask questions, join discussions, and offer advice and support to each other.

This is a private group, which means that anything discussed will only be accessible to people who are in the group – what happens in the group stays in the group 😉

To join the My Hearing Loss Story Facebook Group, simply follow this link and I will add you as a member.

Since the Page and Group are new, I’d really appreciate it if you took a moment to Like, Share, Follow, and Comment! Thank you as always for your wonderful support.

I hope to ‘see’ you all soon and I look forward to sharing stories!

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The Loneliness of a Busy Restaurant

What I have realised is that I appreciate the hearing I have left. And, I pay extra attention to my other senses, as I now rely more on these to interact with the world.

Sitting at the bar in a busy Mexican restaurant in Madrid, I realised just how lonely I was feeling.

Madrid is a great place to live and is a city full of people who enjoy eating out in the evenings. It can be difficult to get a table in a restaurant without making a booking, even on a weekday. This is how we came to be sitting at the bar. I had positioned myself so that my two friends were situated to the right of me – my ‘hearing’ side – so I had the best possibility of hearing them in this situation.

I don’t often go out during the evenings anymore, as I find restaurant noise difficult to be around, sometimes even painful. For three years I have been living with single-sided deafness and I am conscious of my hearing limitations. I knew that I was going to find it difficult to follow conversation amongst the background noise of music and people chatting. Still, I was feeling excited to be spending an evening in a nice restaurant with such a lively atmosphere and surrounded by the delicious rich aroma of Mexican food, which had enveloped us as we’d entered. We had ordered food to share, and it was going to be brought out to us slowly, one dish at a time. I was eager to start eating.

Both the restaurant and bar area were part of the same small space. As the customers consumed more food and drinks, the energy in the restaurant increased and people began to talk with exuberance; the noise levels steadily started to rise. I soon realised the extent of the communication difficulties I was going to have during this evening when, after speaking with me for a while, my friend next to me turned her body to face the other member of our group, during the course of conversation. I had been grasping at fragments of her words and sentences with determination, trying to make sense of them. I had been studying the shapes her lips were making to help give me some indication of what was being said. Now, looking at the side of her face and with no audible vocal clues, I was alone, and no longer part of the discussion.

I didn’t feel annoyed or even upset; I just felt resigned acceptance. Both members of the group were aware of my hearing difficulties. Of course, my friend was always going to need to turn her head away from me at some point. In fact, the conversation had started with her facing me. She was making sure both her companions were being addressed. But, this usually inclusive method of conversation had been complicated by my hearing loss, meaning that it was only possible for me to be involved in broken elements of the dialogue. If I had been with just one person, communication would have been much easier as I would have had the full advantage of always seeing my conversation partner’s face. Or, if we had been able to sit at a table, I could have sat opposite the third member of our group, enabling me to watch his reactions. I would have been able to study his facial expressions and follow the movement of his lips, and maybe, might even have caught some of the letter sounds and words he was saying.

In accepting my situation and realising my inability to successfully follow the conversation, my experience in the restaurant became one based on sights, smells and tastes. I concentrated on these senses which helped to divert my attention from the noise of raised voices. I noticed the decoration of the restaurant. I focussed on the black circular dish behind the bar, full of rock salt, with a peak in the middle, specially designed for coating salt to the rim of a margarita glass. I became lost in my observations. I watched as the bartender meticulously prepared drinks with concentration and care, rubbing lime around the rim of the glass and dipping it elegantly into the salt, so as to form an even rim of crystals. I observed the way he mixed cocktails, vigorously shaking a cocktail shaker, and then bending down to examine each drink carefully before sending them to customers. I noticed the small group of people working in the kitchen at the end of the bar, milling around continuously, some wearing white chef hats. I turned around to look at the groups of people sitting at the tables; I observed them talk animatedly to each other. The atmosphere in this small space was intimate, yet lively. Peoples’ faces looked happy and relaxed. I focused on the taste of the food. I really tasted it, trying to figure out the main ingredients.

When you lose a sense or part of one, there is a theory that your other senses are heightened. I’m not sure if this is the case. What I have realised is that I appreciate the hearing I have left. And, I pay extra attention to my other senses, as I now rely more on these to interact with the world.

I was happy to be out having a meal in a fantastic restaurant. Following my hearing loss, it had originally taken time for me to get to a stage of dealing with noise sensitivity issues to even be able to enter a busy place like this. Yet, this experience, for me, wasn’t one centred around social interaction and conversation, as it seemed to be for the other diners. It was an evening of observation, of noticing delicious aromas of freshly prepared cuisine, and of moments really appreciating the taste of the dishes. I enjoyed the atmosphere and the food, yet without the ability to converse effectively, I felt like I had experienced a lot of it alone.

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CROSSSD Study – You Can Help with Vital Research!

I recently came across an interesting research project, whilst browsing on Twitter. The purpose of the study was to help develop the research of treatments of single-sided deafness (SSD), making it easier and quicker to find out which treatments work best and why.

As someone with SSD, who has been unsuccessful in finding an aid to help overcome the difficulties imposed by this type of hearing loss – namely challenges in localising sounds and understanding speech in noise – I was keen to do whatever I could to help support this research project.

The study is part of a PhD being undertaken by the audiologist and researcher, Roulla Katiri, and is supported by the National Institute for Health Research (NIHR), Nottingham Hearing Biomedical Research Centre (BRC). I wasn’t sure whether I would be able to participate since I am currently living in Spain and the project is based in the UK. So, I sent a message to Roulla to see if there was anything I could do to help. Roulla’s reply was simple and clear – since I have been diagnosed with SSD over 12 months ago and have trialled a hearing aid, I was a perfect candidate to take part in the consensus.

Here’s a little bit more about the study…

The purpose of the study is to develop a common set of ‘outcomes’ to help researchers decide whether a treatment works. In the field of treating SSD, ‘outcomes’ are the things that should be measured when deciding if a hearing aid or an auditory implant is effective.

Examples of ‘outcomes’ are:

The ability to localise sounds
The impact of SSD on quality of life
The ability to hear in noisy places such as restaurants

Different research studies often measure different outcomes, meaning it can be difficult to compare or combine measurements. This makes it hard to identify which treatment works best. If all future studies measure the same common set of ‘outcomes’, research can be moved forward faster.

This is all explained really nicely in this short video (2:19 running time):

The information gathered from this study will help others with SSD; and audiologists, like Roulla, to be able to recommend the best treatment for SSD, when considering the individual requirements of their patients.

My experience completing the study…

As a participant, I was provided with very clear information about the purpose of the study, how to complete it, and how my information would be used.

The survey is comprised of tables of outcome statements like the one shown below:

All I had to do was score the outcomes as to how important I felt they were to measure, for SSD treatments according to my own experience. To do this I was required to select a score on a 1 – 9 importance scale, by simply clicking on the relevant part of the table.

Before completing the study I was a little concerned. This is a cause I am very passionate about, and I was worried about making the wrong selections. However, I soon realised that there couldn’t be an incorrect answer – my opinions were all that mattered. I was also slightly worried I might change my mind about some of my scores, after submitting the survey. But, should this be the case, there was going be a second round of the study, where I would have the opportunity to view a summary of the other participants’ scores for each outcome. If I wished to change any of my scores, after reconsidering my initial decision, I would be able to do so in Round Two. I really couldn’t go wrong!

The phrasing of the outcomes was easy to understand and the survey took approximately half an hour to an hour to complete. If I felt particularly strongly about any of the outcomes, I also had the opportunity to add a comment. If I had needed to take a break, there was the option to save my progress and to continue when I had time.

Who can take part?

You can help if you are:

A member of the public with severe-profound SSD for over 12 months
A healthcare professional with experience of SSD, such as:
- Audiologists
- ENT doctors
- Funders, relevant charities workers e.g. Ménière’s Society, researchers around the world who work in the field of SSD

If you don’t satisfy any of the above criteria, you can still help by increasing awareness of the CROSSSD study. You can share this blog post, or the relevant information, on your social media platforms. Or, you can simply mention the study to friends or family members who have SSD, or who know someone who does.

It is an international study. The more diverse the applicants, the better the overall representation of people will be – from all walks of life, all ages, and from around the world. If the survey is completed by people from a wide variety of different backgrounds, this will give researchers a better understanding of the key outcomes that will help provide effective treatment for the greatest amount of people.

A final note…

It’s so great that this research is being conducted and I am really happy to be able to help contribute to this study and to give my opinion on what really matters regarding treatment for SSD.

The unique challenges that come with living with SSD are not limited to hearing difficulties. People with SSD may also be living with other related issues such as tinnitus, sound sensitivity and fatigue. Those affected may experience psychological and social issues due to difficulty following conversation, which can make communication at social events exhausting, causing stress, anxiety, and reduced self-esteem. Hearing difficulties and mental health issues can also put stress on professional and personal relationships. And, possibly the most difficult issue is that SSD is invisible; people with SSD may feel alone and isolated in their daily struggles.

Please, take a moment to share this post or the information below. And, if you satisfy the criteria to participate, please take the small amount of time to complete the study. It’s quick. It’s simple. Your help could vastly improve the lives of people with single-sided-deafness.

For more information, visit the following website: www.nottingham.ac.uk/go/CROSSSD

Or contact Roulla to register your interest: roulla.katiri@nottingham.ac.uk

The study will close beginning of November 2019.

Hearing Me – with a Twist!

I am so happy to share an updated recording of the BBC World Service Documentary which I was involved in earlier this year.

This version combines the original audio with a twist at the end 😉

Please note, a transcript is also available through the same link – just scroll down the page to download:

BBC World Service – The Documentary, Hearing me

What does life sound like for someone whose hearing has suddenly changed? (This programme contains audio effects that may cause discomfort to people living with hearing conditions. There is a modified version of this programme, with quieter effects, on this page https://bbc.in/2TrInga) What does life sound like for someone whose hearing has suddenly changed?

Please take the time to have a little listen and share.

I hope you enjoy it!

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Learning a New Language with Hearing Loss

I have been living in Madrid for nearly 5 years. During the first two years, I was actively learning Spanish. I was attending evening classes, listening to daily language-learning podcasts on my commute, and was making an effort to converse with Spanish members of staff at work.

My sudden hearing loss happened at the start of my third year in Spain, and since then there has been a marked change in my ability and confidence in learning a second language. Now, over two and a half years following my hearing loss, I still feel like I haven’t addressed this deflated self-confidence.

After I lost the hearing in my left ear, I didn’t return to the evening classes. The sessions were heavily structured around mixing learners together to work in pairs or small groups, requiring them to contribute to the discussion. During each class there would be long periods of time involving many people talking in their groups, which meant overlapping voices, bouncing around the small sparsely furnished classrooms, making hearing and focusing any particular person’s voice very difficult. There were students from many different countries, which would add another obstacle to language learning in a class; with only hearing in one ear comes a difficulty understanding the different intonations and complexities of accents.

As I gradually started to discover mechanisms to manage life with single-sided deafness, I also began to realize that the matter of learning Spanish had been unintentionally suspended during the prior months. And, since returning some focus to my Spanish communication skills, I have realised that learning a language following a hearing loss can present some challenges.

My preferred way of learning Spanish was always through hearing it: by listening to podcasts and eavesdropping on conversations. I continue to be able to recognise Spanish words which I am already familiar with, particularly ones used habitually in conversation. New words, however, pass by quickly in speech, before I have time to think about the way they may be spelt or correctly pronounced. It is now more of a challenge to hear all the phonemes in a word which makes it difficult to identify new words and phrases accurately. Previously I could hear a new word once or twice and be able to spell it. Now, it takes many listens, and sometimes I just can’t hear it clearly.

When learning a new language, it generally takes time to process what has been said in conversation or an instruction, before reacting. Often it has been moments after speaking to someone when I realise what has been said, and by that point, the conversation has perhaps moved on. Similarly, with my hearing loss, it can take a moment to consider spoken information, which I may have only partly grasped, before attempting to decode what has been said. And so, a language learner who also has hearing loss may need extra time for reflection in conversation to enable comprehension.

A pause in dialogue may suggest to a native speaker that they have not been understood when their conversation partner is a language learner. If I ask a Spanish speaker to repeat themselves or if I say ‘pardon’ to signal I haven’t heard what they have said, they often reiterate their words in English, after hearing my accent. They assume it is a matter of misunderstanding due to language ability, rather than a hearing concern. This can be frustrating. I appreciate someone making an effort to speak to me in English with the intention of being helpful, but conversely, it isn’t aiding my language learning or confidence. I know my understanding of spoken Spanish is good, but with the abundance of background noise in public places, there are rarely the ideal listening conditions to facilitate this.

With my hearing loss came a difficulty in gauging the volume of my voice when there are other noises present. If I speak in Spanish and I don’t receive a response, I quickly lose confidence in my words. I usually assume I have pronounced or phrased something incorrectly. But, maybe at times, the issue isn’t my Spanish, rather that I simply speaking too quietly and am not being heard.

Quite surprisingly, I feel that I have developed some skills that ‘hearing people’ may not be as adept at employing in communication as those without full hearing ability; skills that actually help me to comprehend a second language. My hearing loss has prompted me to develop my skills in interpreting tones and in extracting meaning from fragments of dialogue. I am accustomed to filling in gaps left by undetected or misheard words in speech. When someone I know well, such as my boyfriend or my sister, makes a quick comment without first getting my attention, I may hear a collection of tones rather than words. Using my familiarity with their common speech patterns and knowledge of context I can often make a correct assumption regarding what they have said, sometimes without actually hearing a single word. When applied to communication in Spanish, I am able to use this skill to make conjectures, and while this method isn’t conducive to gaining a thorough understanding of a conversation, I am generally able to grasp the essence of a discussion.

I never really appreciated how much I depended on my hearing when learning Spanish. Although it can be challenging and may demand a lot of patience, hearing loss isn’t a barrier to learning a new language. There are many ways to learn a language and there are many resources available, such as phone apps and podcasts with transcripts. I now realise that in order to continue progression in speaking and listening tasks with my hearing loss, I will benefit from focussing more on the written aspects of Spanish. Visual familiarity with new words and sentence structures will help me identify these in dialogue. Perhaps, most importantly, I need to concentrate on building my confidence in continuing to learn a language without full sound.

If you have experience of learning a new language with hearing loss, I’d love you to share your stories and any tips you have. Please feel free to leave a comment.

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

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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.