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.

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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.

Eva’s Hearing Loss Story

‘… a few months back, I decided that I was going to do whatever I wanted to do, without hesitation…What happened? I wasn’t perfect, but I was pretty damn good!’

Following my hearing loss in 2016, I started writing a blog as a way of documenting my thoughts, feelings and observations. It is through my blog that I have connected with many people who have experienced different forms of hearing loss, all with their unique stories.

Hearing loss can present many challenges, both practical and emotional, to the lives of those affected. When we exchange hearing loss stories, we have the opportunity to increase our understanding of the difficulties that living without full sound can bring, and we can use this knowledge, and the advice of others, to develop our coping mechanisms. I have realised the comfort in sharing experiences. Sharing my story has helped me to feel part of a supportive community and I feel less alone in my hearing loss journey.

Let’s Meet Eva

I first ‘met’ Eva in April 2019, when she contacted me through my blog, two months after experiencing a profound sudden hearing loss in her left ear, very similar to mine. She also has tinnitus and some slight balance issues, which accompany her hearing loss.

Eva is 45 and is from Southern California. She enjoys hiking in the mountains and the beautiful Californian terrain, playing golf, yoga, attending her local book club meetings, and spending time with her friends and family. She was working as a director in the business office at a local college but recently stepped down from this demanding position as a result of her sudden hearing loss. She is now in a less demanding role at the college and continues to work full-time.

She has a positive approach to dealing with her single-sided deafness and is working to recover her life since her loss. Eva and I have talked a lot about hearing loss grief, something which we both identify strongly with. She recently remarked, “I hope someday soon my usual cheery self will be my default setting again and not something I have to work so hard to achieve each day. I’m getting there and have made tons of progress.” She recently acquired a CROS hearing aid and she is currently trialling it to see if it will provide her with adequate support. She says, “The jury is still out”.

Eva and I have formed an online friendship, based on regular communication through Email. She kindly allowed me to interview her, during which she gave a very honest account of her hearing loss story…

Eva, has your life changed since your hearing loss?

The first six months following my hearing loss were significantly difficult, but things are starting to settle now that it has been 9 months.

At first, I could not sleep. I do not know if it was tinnitus or anxiety, or my body freaking out due to not receiving input from one ear. I would wake up in a severe panic any time I’d fall asleep for even just a few minutes. I am sleeping much better now, my body has adjusted. It is still not as good as it was before the hearing loss (I was a great sleeper, could sleep 8 or more hours straight if you’d let me), but I am getting at least 4 hours per night each night.

I also had a lot of sensitivity to loud noise, so it was difficult to be in many situations, such as restaurants, church, family parties, etc. I kept pushing myself to be in noisy situations and I find that I am more used to it now, it doesn’t bother me very much anymore. Loud noises would sound so terrible as they entered my damaged ear and would cause awful noises, it still does but I am more used to it now.

Of course, my limited hearing makes certain situations difficult. I have to lip read a lot more, I’m getting better at it. I am very aware of where I am in a room to ensure I will be able to hear. Sometimes people call out to me or approach me from my deaf side, and I have no idea they are there. I am often surprised to see someone standing next to me, sometimes they are talking to me and I have no idea.

Finally, I feel this has greatly affected my relationships with those closest to me as it is difficult for them to understand why I am down. I try really hard not to be down, but it is difficult and I think they may become tired of my negative energy. I know I will come out of this, but it is taking time and I cannot force it. I need time to grieve.

What have you found the most challenging about living with hearing loss?

Strangely, the hearing loss itself is not the most challenging. It is challenging, but my one good ear provides sufficient hearing to function in most situations. The more challenging part is the psychological and emotional part. The grief, the depression, the anxiety, the inability to sleep, the toll it has taken on my relationships, the blow to my self-confidence.

What advice would you give to someone who has recently experienced a sudden hearing loss?

I believe meditation, taking walks, and positive journaling has helped me tremendously to cope with the psychological turmoil that comes with sudden hearing loss. I think any person, healthy or not, should start practicing meditation, so that when something terrible strikes (and it will!), you have built experience meditating. Same goes for taking walks and positive journaling. It is very difficult to get used to your entire world sounding different, the tinnitus, etc. and you can never escape it, so keeping your mind calm and focusing on other things (by meditating, journaling, taking walks) will help get you through.

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Eva also gives encouragement to others and shares her advice in my Facebook support group. In a recent post, she shared her positivity with the other group members in an inspirational comment:

‘… a few months back, I decided that I was going to do whatever I wanted to do, without hesitation. I was going to end the negative self-talk and the fear and just get out there and do my best. I got on an airplane, I swam underwater, I went dancing at posh night clubs, I went to a concert, I went hiking on jagged trails, all things I was either terrified to try (irrational fear that my ear would hurt or blow up or something crazy) or things that I thought would be overly difficult where I’d look like a fool. What happened? I wasn’t perfect, but I was pretty damn good and I felt proud and more encouraged each time. I haven’t stopped since and I find that the more I subject myself to it, the better I get at being in crazy, noisy, rocky places where I thought I’d never be able to function again.’

I really admire Eva’s optimism and motivation in moving forward with her life following her hearing loss. Thank you, Eva, for sharing your story.

 

This article was recently published by Hearing Link.