Anthony’s Hearing Loss Story

Since I’m blind, the sound I can’t take for granted any more, literally means the world to me. It is the key to my independence, to the travels and adventures I’m having and to the communication that keeps me connected and grounded in this world.

Anthony first contacted me after listening to Hearing Me, an audio documentary, which gives a glimpse into my world, following my experience of sudden hearing loss.

He wrote to tell me that he was ‘deeply affected’ by the way my story had been brought to life. He told me that he also has hearing loss, though he remarked, ‘For me, it means more than just that.’

I was intrigued to find out more about Anthony, and he allowed me the opportunity to interview him via Skype when he told me his story.

 

Hi Anthony, can you tell me a little about yourself?

Hi, my name is Anthony Reyers, I’m 27 years old, I was born and raised in Belgium where I am still right now. I’m an only child and my parents still happily live together. Thank god for them because they are always there to support me, which I am very very very happy for.

I was born blind because of this thing called Norrie Disease. It’s a very rare genetic disease… and actually, I didn’t know I was going to have any problem with my hearing until I was 18.

I’m interested in everything audio and music. When it comes to audio, it all really started with a radio receiver that I got from Santa Claus when I was about 7 years old. I started browsing the radio stations and I found really interesting things there because at this time in Belgium there were quite a few radio stations that were broadcasting not-so-mainstream music, and that’s really how I found out about the electronic dance scene.

Later on, I got really really happy to find my partner in crime, Xander, from the Netherlands… Now we’re also producing together which means that we create our own tracks, our own songs. And yeah, somehow it seems that the career as a DJ producer starts to get some attention because I’ve just received a booking request for a major festival in our scene this summer in the Netherlands. For me, this is seriously a dream coming true… It’s one of the most incredible things that you do because then you have a feeling that the stuff you’ve been making has some meaning to some people.

And, aside from that, I’m spending lots and lots of time for an organisation called ICC Belgium which is an organisation that I co-founded. It’s an organisation that tries to increase the independence for blind and visually impaired people, giving them a community that they can rely on.  It’s an international summer camp… We organise training, all about technology and social skills for blind and visually impaired people. I really love helping other blind people out and teaching them what I know… I think that, as a blind person, our organisation can show that there is a way to be a good, confident, independent human being in society… and that your only limit is your own imagination.

Smile with fountain behind (1)

Because of [ICC Belgium], I’ve become an avid traveller. I’ve begun to travel to new places, in my own way. For example, I went to India not so long ago, and I didn’t go there to be the tourist and look at the Taj Mahal. Actually, I went there to visit lots of social projects. I talk to people working with blind people, but also with people who are doing stuff with gay rights, with mental disabilities, with the #MeToo movement there within the movie industry, and also with ecological farming, and so on and so forth… What makes travel really great for me is when I kind of embed with the people that are local, in the sense that I stay with them, I live with them, I live their lives. Usually, I miss out on lots of sightseeing opportunities, but that’s OK because, for me, travelling is all about interacting with the people around me and feeling their stories.

Definitely. You get the true experience of someone who lives there… Let’s get onto the next question.

I gave you quite an extended answer on this one!

It was fantastic! OK, tell me about Norrie Disease. What’s your experience of it?

Norrie Disease is a recessive x-linked genetic disease, very rare. I think we’re about 500 people in the world. That’s our estimate right now – it might be a little more. But, it’s difficult to know since it’s still under-diagnosed as well. Usually, it results in blindness from birth.

My parents were told that since I was actually born with normal hearing, that this would, most probably, just be what I would have. Now, that was a gross misinformation, because what actually happens is that the hearing loss is progressive and happens over time. Usually, it starts to be measurable around the age of 12 or 13, which happened with me. Back then, I thought I was losing hearing because of loud music that I was listening to in my earphones, or that’s what people told me.

But then, later on, I still remember, it was February 2010, I was almost 18. I was sitting in my room, and suddenly it felt like somebody pushed something really heavy against my ear, you know, and suddenly the sound was gone in one of my ears. And, a few minutes later came a very loud loud screeching tinnitus. I think this sounds familiar because it sounds pretty much like sudden sensorineural hearing loss.

Yes, that sounds like my story.

And this was the first major Norrie attack that I had.

I went to look up Norrie on Wikipedia and then I saw that two-thirds of people actually start losing their hearing at some point in their lives with Norrie, which [I now know] is wrong – everyone does!

I didn’t look up my disease for 18 years, because I wasn’t interested. I didn’t really care about the name of my disease. I mean, I was like, OK, apparently I have a genetic disease and I’m blind. OK, fine. But then I realised, suddenly, that there was a lot more to the disease than I knew.

How does Norrie Disease affect your life?

In the beginning, of course, my blindness affected me in many ways. I suppose it has something to do with the social exclusion that I had to go through during secondary school, which wasn’t very nice.

But mostly, when it comes to hearing loss, you suddenly realise that you can’t take your sound for granted, and you start to live everything 3 or 4 times as intense because you think, OK, is this the last time that I will experience what I am experiencing right now? So, it means that every euphoric moment is really really euphoric. But it also means that if something [bad] is going on, or someone is leaving you, or some opportunity that you wanted to have and you miss it for some reason, that this hits very hard as well. Because you’re thinking, Maybe I won’t have any other chance at this anymore.

Can you tell me about the level of understanding of Norrie Disease and the focus of current research?

There is a really hard need for research. The research that we are applying for now is going in a more radical direction, which is the direction of gene therapy.

We will have a theoretical model on how to basically apply the gene therapy, and then in the next stage, we will have tests on cells etc. to see if this thing works.

Also, we need to apply for research that’s on finding lifestyle variables that influence the hearing loss, or other factors that can influence this in a positive way, or if there are already drugs that are existing that can do some damage control.

You mentioned, in your email, that you are currently running a campaign to help raise funds for research into gene therapy…

Yes, in the UK, we have an organisation, The Norrie Disease Foundation (NDF), which is an organisation founded by families who have children affected by Norrie. They have some ambassadors, which I am one. And, basically, in the UK they’re doing massive efforts to raise awareness about Norrie and about this research.

There is an urgent need for funding to make research possible. The money raised from my campaign goes directly to the NDF.

We’re working together with SPARKS, which is a charity that’s founded by the Great Ormond Street Hospital (GOSH).  and what they do is they multiply our fundraising money by 4 and then this is the budget that is put into the research. So with that money, they are funding the research of Norrie.


In his email, Anthony expressed the cruel reality of losing his hearing and the impact it will have on his life:

Since I’m blind, the sound I can’t take for granted any more, literally means the world to me. It is the key to my independence, to the travels and adventures I’m having and to the communication that keeps me connected and grounded in this world.

Voices are what I think of when I imagine my loved ones and they’re such an essential part of me that I simply can’t imagine living without them. As a DJ, producer and musician, music is my heartbeat, my passion, and what I live for every day.

If you would like to make a donation to help fund future research into Norrie Disease, please visit Anthony’s Crowdfunding page here.

And, to see Anthony presenting one of his tracks to Dutch DJ, Armin Van Buuren, on his radio show, click here.

It was an absolute pleasure to speak with Anthony. His passion for life and all things audio were a strong theme throughout our conversation, And, after saying goodbye, I felt elevated by his contagious positive energy. Thank you, Anthony, for sharing your story.

 

This article was recently published by Hearing Link.

Airport Workers – Please Stop Shouting

Image by Jan Vašek from Pixabay

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.

They all arrived at the UK terminal and the grandmother was enjoying seeing the sights and the activity of the airport. When they reached the security gates, my friend’s mother was separated from the group when she was directed towards another conveyor belt. My friend stayed with her grandmother. They had another discussion about restricted items and the importance of declaring any liquids in hand luggage, and then both sorted their belongings into trays, which they placed onto the conveyor belt to be scanned.

The grandmother’s bag was selected for further inspection, due to a suspicious item which had been detected by the scanner. (Spoiler alert: it turns out she had packed some face cream in her bag, not thinking this would be classed as a liquid.)

The grandmother, who finds verbal communication difficult without her hearing aids (which she had innocently taken off to go through the scanner) was asked the question, as predicted. The security worker spoke in a loud voice, with over-accentuated arm gestures, and although the grandmother was able to understand what was being said, she became nervous. Instead of simply answering “yes”, to establish that she had packed her own bag, she blurted out, “Well …no! … I mean they were putting all sorts of things in my bag!”

My friend burst into laughter! The poor grandmother had felt so nervous at the sight of the security officer waving her arms around, that she hadn’t been able to tell this little white lie.

The story prompted me to think about how stressful airports can be. I have lived and travelled in Europe and Southeast Asia, and have experienced many airports. Yet, I find airports in the UK to be some of the most stressful.

The main reason I find UK airports particularly stressful is because the customary code of behaviour for a large number of airport staff, seems to be shouting at travellers, often whilst herding them like livestock through the various elements of the airport procedures. The shouting of orders from airport workers increases my stress levels. This stress often makes me feel irrationally guilty and I sometimes even doubt my own credibility. Maybe I am carrying a sharp object. Maybe a bottle of water has somehow made its way into my hand luggage. Even with full hearing, this used to make me feel stressed. Now, with hearing loss and a sensitivity to sounds, the shouting seems louder, more uncomfortable. 

Due to the lack of sound-absorptive soft furnishings in airports, I am frequently unable to understand what people are saying, as loud voices overlap each other, and the sound becomes distorted. I am a native English speaker and I feel stressed in this situation. Surely for other travellers, such as those whose first language isn’t English, this is also a cause of stress? Imagine being in an airport situation where staff members are shouting things you don’t understand.

During a recent airport experience, I was waiting in the queue at the security gate. I had already removed my boots and was holding my scarf and coat in my hands, ready to place in a tray to be scanned. As I approached the security conveyor belt, the shouting began:

FADE IN:

INT.  UK AIRPORT, SECURITY GATE – EARLY AFTERNOON

SECURITY WORKER shouts something at ME, which I am unable to decipher. 

I look at SECURITY WORKER with confusion, but am now focusing my attention on her – ready to listen to whatever she yells next.

SECURITY WORKER
(Impatient tone)
Do you have any liquids?

Me
No.

I put my head down as I begin to arrange my belongings into different trays.

SECURITY WORKER shouts something at ME, which I am unable to decipher. 

I look at SECURITY WORKER again with confusion.

ME
I’m sorry, I’m hard of hearing.

SECURITY WORKER
 (Shouting, with accentuated lip movements)
Are you carrying any makeup?!

ME
(Using a quiet voice, in an attempt to gently coax her volume level down a few notches)
No.

I put my head down and continue to arrange my belongings into different trays.

SECURITY WORKER shouts something again at ME, which I am again unable to decipher. 

I Look at SECURITY WORKER again. 

SECURITY WORKER
(Shouting)
Are you carrying any hand sanitizer?! Toothpaste?!

My belongings are neatly arranged into three separate trays. I look down as though I am giving this question some consideration.

ME
No.

I put my head down so as to not have to engage in any more questioning. 

SECURITY WORKER
(Shouting)
 Do you have any lighter fluid in your coat pocket?!

I look at SECURITY WORKER again. OK, I heard her this time, but I have had enough, and feign mishearing. 

At this moment a more perceptive security worker behind me taps me on the shoulder and directs me towards the body scanner, bypassing further interrogation.

I walk through the body scanner and the inquisition continues behind me.

ANOTHER SECURITY WORKER
(Distant shouting)
Are you carrying a hairdryer, toaster, microwave?! 

FADE OUT.

At the airport, I feel lucky to have some degree of hearing ability. Though not a simple task, I can generally navigate the system calmly and without needing to mention my hearing loss. 

The one time that I did request special assistance, was when travelling with my boyfriend. This was more for research purposes than necessity. I was intrigued to see what type of support would be provided, and thought that perhaps this could be a good option for me when travelling alone. When booking my flight, I informed the airline of my hearing loss. Upon our arrival in Spain, we were met at the door of the plane by an airport assistant, with a wheelchair. He checked my name on a list on his tablet, and after witnessing me walk out of the plane unaided, asked me whether I needed wheelchair assistance. I was tempted to sit in the chair and get him to wheel me as fast as he could out of there. Instead, I signed my name in an electronic document, and his job was done. 

I am aware that some airports now have a lanyard system to alert airport staff that the wearer has a hidden disability. It is not necessary for the wearer to formally declare their disability, and the airport staff can easily identify travellers that may require some extra help or attention. I haven’t yet used one of these lanyards, but think it is a great idea. And, for making airports more widely accessible, it’s definitely a step in the right direction.

But, my request to all airport staff, especially those who work in the security belt area, is simple: Please Stop Shouting. It can cause a lot of stress, especially for people with hearing loss, and isn’t helpful in aiding our understanding. Try speaking clearly and calmly instead. I understand you have an important job to do, and that you are probably tired, patience-drained, and may have been treated with disrespect by some members of the public. But, surely everyone, on first encounter, (whether they are wearing a lanyard or not) deserves to be treated gently and with respect.

 

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

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No End to the Record

At night-time, it loves the limelight, gobbling it up with glee. The more I focus on it, the more layers of noise I discover.

To mark the end of Tinnitus Week, I am sharing a post I wrote nearly two years ago. At the time, I was struggling to sleep due to my tinnitus. One night, when I was feeling particularly frustrated from lack of sleep and at my failed attempts to ignore the unwanted sounds, I decided instead, to give my attention to my tinnitus and really focus on the types of noises I could hear. I hoped that if I could make peace with the different elements of my tinnitus, I could learn to accept its intrusion on my life and start to manage it more successively. 

The more I listened, the more diverse the sounds became. I started to make notes of what I could hear, which culminated in this blog post:

“I Know a Song That’ll Get on Your Nerves, Get on Your Nerves, Get on Your Nerves…”

Have you ever had a song stuck in your head? – An unwanted earworm that keeps playing over and over? A catchy piece of music that continually repeats through your mind, long after it has finished playing? This is similar to how I would describe my tinnitus. But instead of the notion of the song, there is actual ‘noise’, and the music never stops playing. There is no end to the record.

Tinnitus is defined as the perception of noise or ringing in the ears or head. The noise is not from an external source and can manifest itself in many forms. The varying sounds have been described as whistling, whirring, clicking, screeching, hissing, ringing, buzzing, pulsing, whooshing, or even musical. Tinnitus is a symptom of an underlying condition such as hearing loss, ear injury or circulation problems. From the moment I lost the hearing in my left ear, I simultaneously gained these unwanted sounds. My life became noisier.

My tinnitus feeds off salt and sugar, caffeine and alcohol, and feasts on a lack of sleep. Exposure to loud noise makes my tinnitus worse; giving it energy, enabling it to accelerate or become louder, and more prominent. Sometimes it is so loud that it is difficult to hear or concentrate on ‘real’ sounds. Sometimes it steals my attention from conversation. My tinnitus seems to be related to the pressure I feel in my ears and head. Louder or faster tinnitus means more pressure, sometimes culminating in a pain that feels like the inside of my ear is being stretched to full capacity; to the point of something bursting.

For some people, their tinnitus comes and goes, and for others, it is constant, chronic and persistent. Mine is ever-present. It will often fade into the background of my days; everyday noises will usually mask it, forcing it away from my attention. Yet, there is the cruelty of finding a peaceful moment or going for a walk in the countryside, and realizing the tinnitus has no ‘real’ background noise to overcome. It bounds into the foreground, onto the stage for full attention.

At night-time, there are no ‘real’ sounds to mask it. At night-time, it loves the limelight; gobbling it up with glee. The more I focus on it, the more layers of noise I discover. The foundation layer is the sensation of being underwater. I am under the sea, swimming deeper and deeper; water whooshing past my ears. With more focus, electronic-sounding agonized moans begin to emerge. A violin enters the stage; playing a continuous high-pitched and out of tune note that wavers painfully up and down in tone. The sound of an old copper kettle materializes, boiling with the shrill continuous whistle; demanding to be taken off the heat. Occasionally there is a piercing spark of noise; like the sound you’d expect your finger to make if you were turning something magically to ice. Sometimes the moans sound like melancholy singing. A penetrating fog horn begins to sound. A burst of crackling radio static joins the chorus, as the knob of an analogue-radio is turned; seeking out a resonating frequency and occasionally skipping past the notion of a word or a piece of music.  I make pictures with my mind. I form images around the sounds. The more I focus, the more elaborate the scenes become. Wailing prisoners bound and shackled, all in a row, somewhere in the distance. Someone is trying to scream but is not able to make the desired sound, just a sharp continuous squeal. There is someone drying their hair in another room…

… When I stop feeding it my attention, it’s back to swimming underwater.

My tinnitus is like being in an argument I don’t want to be part of. I am engaged in a duel I didn’t sign up for. At times it can be torture. I am always fighting. I stay busy. I take my mind off it. I surround myself with everyday sounds.

I find myself observing people on the street, on the Metro, in bars, restaurants and parks. I wonder whether they too have these unwanted noises. Are they too trying to ignore the record that won’t stop playing?

I choose to ignore my tinnitus with as little effort as possible. Since the more effort used, the more attention it receives, and then it starts to win the battle. It’s a paradox I must fight. I wish for the noises to stop. I dream of relishing a quiet moment, but I can’t remember silence.

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,

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.

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

Screenshot 2019-11-28 at 20.59.18 - Edited

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

Screenshot 2019-11-28 at 21.00.04 - Edited

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!

 

Donations

Please help to fuel my writing by buying me a cup of tea 🙂

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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.

This article was recently published by Hearing link.

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CROSSSD Study – You Can Help with Vital Research!

logo-CROSSSD (2)

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 aidto 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:

Snapshot 1

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.