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.