Wednesday, 21 October 2015

Living with Hearing Loss in the Twenty-First Century. Modern Technology.

A Personal Perspective.


Why hearing loss and not deafness? It is an emotive subject; different sufferers have different viewpoints and feelings. There are many stages of what is often loosely termed as 'deafness'. It is still such an unconscious stigma to many, both observers and the one inflicted with it but not I hope as great as it once was. 

My understanding is that 'deaf' relates to the severity of hearing loss, being at the top end of the spectrum from mild to severe and through profound to deaf. Many have a mild, age-related loss and have become used to 'putting up' with it - along with your family.

May I share what happened to me today and my own experiences over a lifetime? You may emphasise with some of it. If so, I hope that you feel encouraged to get your hearing checked out so that you can be fully into the world. I first penned much of the following some years ago. It has lain on file, unseen but not forgotten.


"The Impact of Hearing Loss.


Many of us relate deafness – or to be more precise, hearing loss – to the elderly, older people and being part and parcel of life. Much is made of other disabilities and learning difficulties such as Dyslexia and Attention Deficit Hyperactivity Disorder (ADHD) to name just two, with support being provided for these. And rightly so.

Definition of disability under the Equality Act 2010
                “You’re disabled under the Equality Act 2010 if you have a physical or mental
                impairment that has a ‘substantial’ and ‘long-term’ negative effect on your
                ability to do normal daily activities.” 
                https://www.gov.uk/definition-of-disability-under-equality-act-2010  (sourced 19.12.2012)

However, there is a more insidious disability, which can be (or was in the case study below) swept under the carpet, ignored, and resulting in a label being applied to the sufferer. Think about it for a moment. You see someone wearing hearing aids; you know, those which fit over and behind the ear. What is your perception? That they are a little ‘not quite as clever as normal’ people? A little bit slow? A little bit stupid? Different? Especially if they are younger and working in a fast-paced organisation. Also hearing loss affects the sound of speech delivery.

They may not be what is medically termed as ‘deaf’. They may have a profound or severe hearing loss, the kind that Joe Public refers to as ‘being deaf’. Hearing loss, if not addressed, affects personal self-esteem, confidence, social life, family life, development, job prospects,  and psychological aspects of life to name a few.


A Case Study of someone who I will refer to as Mary.
This is Mary’s story:
 'You don’t listen!” This had been a constant admonishment throughout my life. At this latest accusation, I could only stand mute. I could not explain the problems and difficulties that I had experienced that afternoon. It was too personal.
In all my childhood and formative years I had felt as if I was on the inside, looking out. When I was seven years old, the school nurse detected a hearing problem but for reasons that I was later to understand, it was not addressed. True, I was a dreamer often retreating into a world of my own where I blotted out  everything around me. This, combined with my hearing problems gave rise to the perception that I wasn’t quite bright. In other words, a bit slow. At least not as bright and alert as my older siblings in whose shadow I grew up. I was quiet, shy, and lacking in confidence. Given how much I chattered at home, my family naturally found it hard to believe that outside the home, I hardly spoke. The big wide world was a frightening place in which I was always one step behind. Always ‘catching up’ as what was being said or discussed always penetrated my barriers of hearing that little bit later than my friends and colleagues. “What?” became a common remark from my lips!
I found it quite easy when reading a book to switch off leading my family to assume that I was not listening. In fact, I had not heard. In primary school, this led my teachers to think that I would not fare well in the 11+ scholarship but they reluctantly entered me. Contrary to some of my ‘clever’ friends, I actually found the sums easy and said so. No one believed me or expected me to pass but I confounded them all and did; my mother insisted that I took up the place at Grammar School. (I believe I have repaid her early faith in me.)
On starting work at 16 years of age, this undoubtedly affected my development and confidence. I had problems when answering the telephone. (At that time, home telephones were few and far between and I was not used to one, which compounded the problem.) I visited the doctor. She held a watch to my left ear and pronounced me deaf in that ear. Ouch! - stigma - different. Eventually, I had tests, followed by years of treatment and operations on the right ear (yes - the left one went by the wayside) which failed to clear the problem in the Eustachian tube. During this period I was raising a family (one of whom had the same problem which was largely ignored by his teachers who labelled him as not paying attention and lazy), and returned to work in a limited capacity. I struggled in meetings, especially if I had a heavy cold, which rendered me totally deaf. Eventually, over twenty years ago my surgeon suggested a hearing aid as the scarring on the eardrum from operations was exacerbating the problem. Reluctantly, I did - after I had grown my hair so that the aid could not be detected in work. It is perceptions you see that are one of the problems – from other people.


The NHS aid was good. The difference was amazing! Wonderful!
  • It was like lifting a curtain on the world!
  • I was not missing conversations any more.
  • I grew in confidence and applied for promotion.
  • You see, I knew that now I could cope in meetings. I could take a full part in discussions without having to say “What?” “Pardon?” while straining to hear in spite of sitting near to  the speaker (so that I could lip read).
  • I was aware of what was going on around me.
  • I appeared normal.

I was eventually told that there was a problem in the left ear  and that  NHS funding allowed an aid for that ear as well.  An unobtrusive in-the-ear type. Unfortunately, at this time the NHS did not provide digital hearing aids that had come onto the market. The effect of two analogue aids, which only addressed volume, in certain environments, caused too much noise in my head making me feel that I had my head in a drum and, more embarrassingly still, a high-pitched noise if my mobile phone went off in a confined situation. (I worked out in the workplace in all sorts of offices and rooms.)
After five years, I went down the private route and was fitted with an analogue aid (in one ear only at this time due to cost) which addressed both volume and range. This is an important aspect, as you need to hear what the sound is and where it is coming from.
The difference of wearing a discreet aid that addressed volume and range was amazing. I was not in trouble anymore for not answering the telephone in our large open plan office with its many departments. I could locate which phone was ringing! In addition, answer it immediately in a professional manner. I was part of the team; an outsider no longer.
Over the following fifteen years as digital aids became more available and affordable I updated my in the ear aids. I was able to have unobtrusive completely in the canal (CIC) to meet changing prescriptions. My problem is severe. However, it is addressed. That is the key.
 Over these fifteen - twenty years, I not only grew in confidence, but I undertook development programmes and achieved far beyond what anyone, least of all I, ever expected. It is confidence you see, that and being part of the wide-awake world. We are not stupid, not even deaf. We just have a hearing loss.
Sadly, for the time being due to further problems, I am back into wearing NHS aids, the design of which are limited by funding and after a private one, uncomfortable to say the least.
So, there we have it. A case study that is one example of the impact of hearing loss.
The organisation Action on Hearing Loss (formerly the Royal National Institute for the Deaf. RNID) (Twitter - @ActionOnHearing) are working to raise awareness and secure more funding.
                We want a world where hearing loss doesn't limit or label people, where tinnitus is                           silenced – and where people value and look after their hearing.”  http://www.actiononhearingloss.org.uk/ (sourced 19.12.2012)
How can you be treated fairly if the problem is swept under the carpet? It might help people to address the cosmetic issues and obtain more sophisticated and effective aids if an allowance of the cost of an NHS aid could be offset against a private one. Food for thought!
Specsavers Opticians http://www.specsavers.co.uk/hearing/hearing-aids/nhs-hearing-aids/#header in England are starting to carry out NHS hearing checks and supplying NHS hearing aids in their hearing centres in England. Being more accessible and psychologically more beneficial, this innovative programme should help to break down barriers for people seeking help. Your local hospital may have a drop-in system in Audiology for hearing tests without a referral from the doctor.
I hope that the long-term effect will be that:
  • People will not be so shy of admitting that there is a loss.
  • Referrals from the doctor will cut waiting times with hospital visits no longer the only option. A visit to a high-street opticians / hearing centre is less frightening.
  • The perceived stigma will disappear. After all there is no stigma to wearing spectacles is there?
Barriers to learning and development will be reduced if a hearing loss is recognised and   addressed as soon as is practicable.

To summarise.
The impact of hearing loss affects all walks and areas of life, which the case study above illustrates. However, everyone’s experience is different but includes:
  • Lack of confidence in life in general, at home, in work or at play.
  • Growth in learning and development of self.
  • A barrier to learning.
  • Labelling.
  • Exclusion.
  • Job prospects.
  • Direction of sounds.
  • In speaking as loud (or as quiet) as you can hear yourself, family members think that you are shouting or raising your voice.
  • Stressful for family members.
  • Family life.
  • Lack of alertness and awareness. Perception of being stupid/slow.
  • In traffic.
                   
    The impact of the type of hearing aid is another consideration.
  • Confidence, both socially and in employment.
  • Functionality.
  • Comfort. If uncomfortable, the user will take it out. 
  • Cosmetic - lack of confidence if obtrusive. Restricted in choice of hairstyle.
On the plus side, if you want some peace and quiet, it is handy sometimes to be able, in the confines of your home, to reduce outside noise!
What to do next.
Do you suspect that you have a hearing loss? In the comfort of your home, take the 3-minute hearing check provided by Action on Hearing Loss at http://www.specsavers.co.uk/hearing/.
“What?” “Pardon?”
©Rosalie Marsh December 2012

And Now?

Yes, I am Mary and over the last twelve months I have been travelling down the route of having a  Bone- Anchored Hearing Aid ( BAHA) fitted, which would bypass the problems of the middle ear and conduct sounds through the bone into the inner ear. [Hope I have that right.] I had a small operation a few weeks ago to have the implant for the abutment.
I must give my heartfelt thanks to Mr Snow and team in the ENT department at the Wrecsam Maelor, Anna Powell, Richard Matthias and team  in the Audiology department.
Today, I had the hearing aid fitted. It is silver. It is unobtrusive. It provides a marvellous sound. Richard today was very upfront about my condition and for the first time I heard how I have had a bad experience throughout life. I have just taken it on the chin and got on with it. His empathy made me tearful.  The power of Wi Fi for seamless connection to the setting-up procedure was an eye-opener. My family deserve huge 'thanks' for putting up with the surrounding problem throughout their lives - an unspoken aspect of hearing loss but there nevertheless.
My silver BAHA


I don't need - as far as I can tell - the aid in my left ear either as the sound is all around. There is an device to cover mobile phones. 

Surround sound? A bonus. 

After all these years I have been brought into the real world in a painless - well almost - way.  

And, I can tuck my hair behind my ear again. Roll on Saturday when my hair maestro Nat Cargius will get my hair to rights.
Where is it?

Walking down the hospital corridor towards the exit, our eldest daughter was heading towards us.(She is a Sister on the Special Care baby Unit and coming off shift.)
"Hi Mum!" I held out both arms as she strode towards me.
"I'm free! I'm free!"
A quick inspection and "Wow" came her reaction with a big hug..
Rosalie. xx

PS. Later, I switched on the computer and "It sounds like a tractor. We did say that we would change it next year."  The reply?
"It always sounds like that."  Say no more. . . .

Update October 24th 2015.
Today, I have completed my rehabilitation as a BAHA user. My skilled hairdresser Nat Cargius of Rossett, Wrexham, applied his expertise to give me a new shorter cut while maintaining cover over the 'sound processor' or BAHA.

Nat is a specialist consultant in cosmetic hair solutions under the Really, Really Me banner. Although I still have my own hair he has displayed the same patience, care, and skill to make sure my hair really, really is me. Thank you Nat.
Rosalie.