Rob Beenders

My hearing

challenge !

The life-changing effects

of a hearing solution

Willems Uitgevers

Text: Rob Beenders

(Cover) photos: Photography An Clapdorp

Cover design: Willems Uitgevers

Layout: Willems Uitgevers

Translation Mijn Hoorreis:

Pauline Ninck Blok (pninckblok@gmail.com)

© Willems Uitgevers, Noorderwijk, 2021

https://boeken.cafe

ISBN e-book 978 949 3242 418

English version ISBN 978 949 3242 401

Original ISBN 978 949 3242 081 (Mijn hoorreis)

Depot D/2021/13.616/15

All rights reserved. No parts of this book may be reproduced or published by print, photocopy, microfilm or in any manner whatsoever (electronically and mechanically) without the prior written consent of the publisher or the author.

Better hearing

is better living

Preface

Due to an acute infection, I lost my hearing overnight in my left ear. Then I got Ménière’s disease which also affected the hearing in my right ear.

All of a sudden I, Rob, only 37 years old, was suffering from ‘severe hearing loss’. Now, five years later, everything is different, but I don’t feel like somebody who has hearing loss. I work full-time, I’m an active runner and I have a busy social life. The quality of my life greatly improved thanks to real hearing solutions.

I have a cochlear implant in my left ear and a compatible hearing aid in my right ear. It’s the culmination of a fascinating ‘hearing journey’ that changed my life completely. In a good way.

People often ask me about the devices I use.

Is that a new device for hands-free calling?

Is that a new radio headset?

Are you completely deaf when you switch off the device?

Does it hurt to have one of those things?

Can you still go to the hairdresser’s even if you’re wearing that device?

Can you still speak properly if you are affected by hearing loss?

Isn’t it just old people that struggle with hearing issues?

…

And, of course, the most common question: What are my chances of having hearing loss and will I need to wear a hearing aid?

So, the time is right to share my story with you and answer all these questions. Many people affected by (severe) hearing loss who do not try to find an adequate solution, do not realise that they could improve their lives to an imaginable extent. Many feel that hearing loss is difficult to discuss and especially hearing aids are unmentionable. ‘They’re for old people, they’re far from cool, they’re uncomfortable’ are just a few of the silly reasons for which people wait before they decide that it’s time to get a hearing aid.

But nothing could be further from the truth. More and more people, also younger people, are facing hearing loss. Hearing loss has no age limit, and once you find yourself in the middle of it, it’s important that you find the right solution. Don’t worry: there is a solution for (almost) every hearing which is even more detrimental to the child’s development.

challenge. But the first step is having an open mind. Because why wouldn’t you improve your life and simply accept that you have a hearing problem?

But, be warned: in this book, you will not find any scientific research, grand theories nor will I make grandiose statements. I am going to tell you my story, I want to share my journey to find a way to deal with my hearing problems, by looking for adequate solutions. But I will also tell you about other people’s experiences and the ways in which they dealt with their hearing loss. It illustrates how the choice of a hearing aid can represent a radical and positive change in your life and that of others too. A huge thanks to Joost, Pol, Kamiel, Jiska, Arthur, Janneke, Evelien and Stijn for their collaboration!

Not being able to hear everything or sudden deafness is a harsh reality to face. It will often feel like a personal battle, but your surroundings are very much affected by it too, as your partner, your children, grandchildren, colleagues, and friends will need to adapt to this new reality as well.

I truly hope that this book will be able to help and guide you so that you too may find the best hearing solution which will allow you to experience a better quality of life.

Rob Beenders

Instagram: @robbeenders

Contact: rob.beenders@me.com

Chapter 1

1. Our hearing journey begins in the cradle

I was born in 1979, in the Belgian city of Bree, medically speaking a century ago. The monitoring of pregnancies was still in its infancy. I have a twin brother, but up until the day we were born, not one single test had revealed that my parents were going to have twins. So it was quite the surprise when two of us popped out. ‘Switch off the light,’ my dad said, ‘I think they’re attracted by it.’ After we were born, we spent two months in an incubator because the pregnancy had only lasted seven months. Back then it wasn’t common to check whether there were any problems with the child’s hearing or not.

There was no newborn screening to detect hearing problems. Nowadays, it is standard procedure in Belgium. In Flanders, the Dutch-speaking part of Belgium, newborn hearing screening tests have become common practice, since 1998, and they are available to all newborns, between two and four weeks after birth, to check for hearing problems. Flanders had a world first here. Nowhere else in the world were newborn hearing screening tests carried out as part of standard procedure. Now, over 20 years later, it has become standard procedure in many other countries as well. A very good development indeed.

Without a medical hearing test, it’s extremely difficult to evaluate whether your newborn has hearing problems. Usually, babies are used to sounds because they heard many while in the womb. This also explains why babies often don’t respond or immediately react to normal everyday sounds. And why they don’t wake up so easily either when they’re asleep. A passing car usually won’t wake them. This doesn’t mean that babies aren’t startled by noises. Your newborn sleeping peacefully in your arms will probably be startled by a shutting door. But you shouldn’t expect much more than that in the first few weeks after birth. Don’t expect them to respond when you call their name, nor should you expect them to understand where the sound is coming from or what’s making the sound. The mere reaction to a sound does not determine whether there is hearing loss or not. Your child might hear out of one ear and simply react because of that. So it is of the utmost importance that hearing tests are carried out in order to diagnose any hearing problems. This can’t be done during pregnancy. Parents are busy getting the nursery ready, they’re excited to find out whether it’s a girl or a boy, they’re thinking about names... But not many people ask themselves: what happens if my child is born deaf?

A hearing screening test is completely painless for the baby. Soft sounds are sent to the ears through earphones. Electrodes placed on the scalp of the baby measure the electronic activity of the auditory nerve and the brainstem. Based on the test results either PASS or REFER is given. PASS means that no hearing loss was detected. REFER indicates that it was not possible to ascertain, at the time of the test, whether hearing is normal. In principle, the hearing test can be repeated a few days later and results can be compared. In case the baby’s hearing appears to be affected, you’ll be referred, so that treatment can be started as soon as possible, if necessary.

The hearing test should be carried out as early as possible. If hearing loss is treated before the age of six months, it has been scientifically proven that this will have positive effects on the child’s development. Science and technology are so advanced these days that for every newborn with a hearing problem, there could be a solution.

But, of course, it always comes as a shock to parents when hearing loss or deafness is detected in their child, especially at an early stage. It is an invisible problem to which you need to react fast, and it will require you to make decisions without being able to talk about it with your child first. You will be making decisions which will affect the rest of your child’s life. A tough decision to make. Why do these kinds of things happen? There’s no easy answer. But you’re not alone, I know that much. About 34 million children worldwide suffer from hearing loss. Five out of a thousand babies are born with a hearing problem or lose their hearing soon after birth. Every year about 300 deaf children are born, in the Netherlands alone, of which approximately forty percent determined by hereditary factors, for example, because one of the parents is deaf. In Flanders, about 150 babies with hearing problems are born each year. In the United Kingdom, severe hearing loss is identified in about 840 babies a year. 1 out of 1,000 children is deaf at the age of three.

Over the past few years, I’ve had the opportunity to meet with parents who were told that their child had a hearing problem. In most cases, the children were diagnosed with complete hearing loss. This is hard to digest, especially considering that, for most families, deafness or hearing loss is a new and unknown reality. Most cases come with no hereditary condition.

How can we make hearing loss open to discussion?

I spoke with (my) ENT specialist Sebastien Janssens de Varebeke

We all know somebody who has difficulty hearing. How many times have we made fun of ‘granny’ because she got it completely wrong, again, or of John who turns up his TV too loud when he watches the news. But it can also lead to uncomfortable confrontations. How can you tell somebody that ‘they didn’t hear it just right’ or that they’ve been asking ‘what’s that’ more and more?

For many, it is difficult to broach the subject of hearing loss. Especially if it concerns your partner, your parents, or your grandparents. Unfortunately, for many, there still seems to be a taboo regarding the subject, which means the threshold for many is so high that they will not try to find a solution. Procrastination is frequent as people tend to put off hearing screening tests. We regularly go to the dentist’s, but do you ever get your hearing tested?

However, no cost or expense is spared to inform people, and to convince them to test their hearing. In every commercial break, you’ll see at least one ad by hearing experts encouraging you to come and do a free test. Some find them - useful , others find them annoying. But the fact that there are so many of these ads, is a positive development in my opinion. We think it’s normal to wear glasses, so why shouldn’t it be okay to wear a hearing device? And commercials and communication are part of this.

The first step is always the hardest. Do you first go to the general practitioner ? Or is it better to immediately consult an ear, nose and throat specialist? Should you see an independent audiologist near you, or should you go to a hearing aid shop that advertises on the radio or on TV? I discussed it with Dr. Janssens de Varebeke, my ear, nose and throat specialist. I wanted him to give me advice regarding the desired path to follow and what differences there are in terms of hearing loss in different age groups.

‘It is common to first go see your general practitioner , and he or she can then refer you to a specialist, if necessary, to test your hearing. A hearing test conducted by a doctor is necessary in order to identify any medical issues that should or can be treated with a medical procedure. Only when it is established that you require, for example, a traditional hearing aid, is it necessary to see a hearing aid expert or an audiologist.’

If it is necessary to have the hearing test conducted by a doctor and if we know that the number of people that suffer from hearing loss is increasing exponentially, wouldn’t it be interesting to have everybody undergo a mandatory screening? Some countries already do a free, mandatory screening to identify colon cancer, for example, from a certain age. Dr. Janssens de Varebeke isn’t against it at all, but he does realise that, due to government budget restrictions, it’s unlikely to happen. Children with hearing problems are already carefully monitored in many European countries during their entire lives and this is a very positive aspect. But if you don’t have hearing problems, then it’s up to you to get a hearing test done, if you feel you need one.

The doctor also sees an important difference between mandatory hearing screening and population screening on cancer. Luckily, hearing problems aren’t life-threatening. Identifying cancer at an early stage, is crucial. It can save lives.

Apart from possible screenings and tests, the surroundings often also play a decisive role during one’s hearing journey. ‘The more support you receive, from your family, friends, colleagues, the better it is for the person suffering from hearing loss,’ my doctor said. But this is not the first time I’ve heard it, the sympathy and support you receive from your immediate surroundings will help speed up the acceptance process in case of hearing loss. ‘Everybody responds differently to hearing loss. For some it’s a wake-up call, for others it comes as a surprise. Many people are taken aback by the fact that they need a hearing aid, and they need time to accept it.’

There’s also a growing number of people, according to the doctor, suffering from social isolation and even cognitive decline, as a result of hearing loss. They are caught in a vicious circle and not everybody has the courage to take the step towards finding a solution. ‘When people with severe hearing loss do not choose an adequate solution, they become dependent on their surroundings, and they are completely disoriented when something changes. They often don’t even realise how much they depend on others, they perceive it as normal. Over the years, they have adapted to the fact that they are hard of hearing, and don’t realise how serious the situation is. Some people adapt to their situation, others don’t, everybody reacts differently to a hearing problem. Often, those who do want to find a solution and decide to get their hearing tested, will be extremely surprised once they see the results.’

‘Hearing loss often develops gradually and isn’t always noticed. Especially when those around you don’t say anything about it. You can compare it to when people gain weight: it’s not something that you notice overnight’, Dr. Janssens de Varebeke also noted.

His comments gave me even more to think about. He mentioned a few things that kept coming to my mind. Especially the fact that everybody reacts differently to hearing loss and hearing aids fascinates me. Why is that? Why doesn’t it make sense to choose a hearing aid if this will improve the way you live your life? I mean, if you break your leg, don’t you automatically get a cast on your leg and crutches, and you don’t try to resist it because you’d feel ashamed or like they wouldn’t accept you because of your leg? I wish you the best of luck if you go out for a walk without any treatment or the right care...

I also wonder about the “care pathway” that people (need to) undertake when dealing with hearing loss. There doesn’t seem to be a “standard route”. You can walk into a hearing aid shop, see your doctor, go to an ear, nose and throat specialist,... Shouldn’t there be a standard procedure to follow, which would make it easier and more straightforward to deal with it? Or am I mistaken?

A taboo or lack of marketing?

On average, it takes about seven years before people with hearing loss actually decide to get a hearing device. Or do we call it a ‘hearing aid’? Because it sounds as though you’ve got some sort of huge device stuck behind your ears. There’s absolutely nothing trendy about hearing loss and hearing aids. Research also confirms this: people associate hearing devices with old people, and so they’d rather not admit they need one. Not only do all actors in TV adverts tend to be ‘greying’, it is also emphasized that these devices are ‘so small that you can hardly see them’. It indirectly confirms that a hearing device is something you’d rather hide; something you don’t want others to see; something you’re ashamed about. But why?

Glasses nowadays have become a fashion accessory, but hearing aids still have a long way to go. Maybe these modern times can actually help, because a lot of young people use (wireless) earpieces. So it’s about time that the marketing involved with hearing aids picks up on this. A hearing device that matches your smartphone cover? More instagram-influences with hearing devices? Famous actors or celebrities showing off their hearing devices?

A hearable or hearwear that connects you to spotify? This could actually become a plus.

But there is more to it than just marketing.

Unknown is unloved

Our hearing, and the important role it plays in respect to who we are, to our social life, to our professional relationships, to our mental well-being, ... It remains largely unexplored by the general public. People are generally aware of the fact that they are near-sighted or far-sighted, and to what extent, but they have no idea how to evaluate their hearing. And this is exactly the reason why, generally, hearing loss is underestimated. Audiologists know that many people blame the fact that they can’t hear on their surroundings: ‘try to articulate better’ or ‘speak up’. In addition, hearing loss cannot be compared objectively with that of others, even though we tend to (‘my neighbour has had such good results from hearing device X). No two forms of hearing loss are alike: every person experiences hearing loss in a different way.

The downside of people underestimating their hearing loss, is that they overestimate the solution. Because when they finally decide to see a specialist and to wear a hearing aid, they expect to regain their ‘normal’ hearing. But they don’t: a hearing device is not a ‘cure’. You will still have to deal with the loss, but your hearing is aided. So, it also asks for psychological adjustment, an acceptance process where we learn to live with this ‘other’ way of hearing. But the matter is largely undiscussed.

Makeable perfection

How we deal with hearing loss, whether it appears unexpectedly, from a young age, or gradually when we’re older, is typical of today’s society. The desire for perfection and control leads to, on the one hand, a denial of our own vulnerability and, on the other, to the obvious expectation that medical science (or technology) will know how to fix our limitations. This makes it extra hard when we are confronted with hearing loss: the causes are often unknown, the solution is merely an ‘aid’ and we basically just need to learn to accept the loss. But not everybody does. Just think of the way children react to a peer with an implant or external hearing aid. Children don’t care at all, they tend to ignore it and it doesn’t lead to bullying. The parents or grandparents, however, dó have an issue with the visible hearing devices, in their quest for the perfect life for their child. This is something that is seen in other life domains as well.

At the centre of our lives