Unfortunately, through the two layers of face-coverings, her speech reached my ear as a series of unintelligible scrambled tones and fragments of muffled words.
For over a month, people here in Madrid have been wearing face masks on the crowded city streets to help limit the spread of COVID-19, and it is obligatory for travellers to use face coverings on public transport and in shops. Face masks pose challenges for people with hearing loss, who rely on clearly articulated speech and/or lipreading for effective communication.
I have had some positive experiences, especially in small shops, where shopkeepers have used hand gestures to help aid communication when I’ve failed to understand something they have said through their mask. I have also had some frustrating and upsetting incidents. During a recent medical assessment, I interacted with three healthcare workers, who each had a different method of communicating through the face mask barrier.
She came round the corner just in time to watch me vomit on the side of the street. I think that was the moment she internalised what was happening.
For 10 years, I have been an avid listener of storytelling podcasts such as The Moth and Risk!. There is something soothing and therapeutic about listening to the voice of someone telling a true story and in learning about extraordinary things that have happened in their lives. The experiences of others, whether key life events or comical anecdotes, not only have the potential to inspire and shock the audience but can help people overcome difficult times; by finding relatable elements in these personal stories, the listener and the storyteller can share the experience.
When I learnt that New York-based storyteller, writer and performer, Brad Lawrence, like me has hearing loss in his left ear and also Ménière’s disease (a disorder that affects the inner ear, causing vertigo and hearing loss), I was keen to know more about his story.
Brad kindly agreed to an interview via Skype where he spoke openly about how hearing loss and Ménière’s disease has impacted on his life. During the conversation, he shared his bright outlook through amusing accounts and also revealed his greatest hearing loss fear.
A friend of mine recently told me a story about how her elderly grandmother, who is in her eighties, had travelled to Spain. It was only the grandmother’s second trip ever, travelling abroad.
My friend, her mother, and the grandmother were all travelling together and the grandmother was briefed about what to expect at the airport. Whilst packing, my friend and her mum had distributed their clothes and toiletries between the three combined items of hand-luggage. They explained to the grandmother that, although they had done the packing for her, should she be asked by a security worker whether she had packed her own bag, to confirm that she had. The purpose of this question, they assured her, was intended for crimes considerably more sinister than sharing luggage space.
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.
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 SSDover 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 studyis 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; andaudiologists, 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’sSociety, 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 issuesdue 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.
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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Please help to fuel my writing by buying me a cup of tea 🙂
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.
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.
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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:
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 🙂
Donations
Please help to fuel my writing by buying me a cup of tea 🙂
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.
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.
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!
