I was born blind so my lack of seeing has never been a problem for me. I had a mild hearing loss from a young age, but I always relied a lot on my hearing,

My hearing deteriorated significantly at the time my mother, who was also my carer, was moved to a nursing home. This was a very stressful time and I do think it that it was this and her subsequent death that really exacerbated my hearing loss.  This was a time of struggle for me, there was a lot to get used to.

When I first got the cochlea implants, I found it frightening at first. My support worker said I jumped a mile the first time I heard something. But I quicky started to have a conversation with the implant team which was an amazing moment for me.  My support worker was in tears because she was overcome by the experience. For a while after I first got them, everyone sounded Australian!! I now think that people sound like they should, or how I imagine they do sound.

There are things I miss about being deaf – I can get very tired with the implants – the other day I had two people around and afterwards I was absolutely shattered – I took the implants out to relax for a bit  – it was lovely….. But I don’t do this very often. Don’t misunderstand me, the positives of the cochlea implants far override the negatives – for instance, the new friends I have made since having the implants would have been a lot more difficult to make without them.

Another really precious moment for me was when I realised I could hear the birds.  I didn’t think I would ever been able to hear that – it took me took me awhile to understand what the sound was.

The blackbird call is my favourite.  To me it’s like the bird wants a “few more minutes”. It’s a sound I find lovely. I always look forward them coming back every spring.

Text taken from longer interviews with people with lived experience of hearing loss.

Bernadette has always had a slight hearing loss but had managed to ‘just get on with life’. Eventually her family persuaded her to go for a test as they felt that her hearing was deteriorating profoundly and told her they would turn the television off if she didn’t get it done!

She used to pity herself and wonder why this had happened to her. However, after meeting other people at her lip reading class, she now feels fortunate as she knows things could have been much worse had it happened at a much earlier stage in her life, which would have affected her more significantly. Bernadette likes to wear her hearing aids as it makes her feel more at ease with her hearing.

Bernadette’s family is very supportive with her hearing loss. They make an extra effort by coming closer to her when speaking and saying things twice. Whenever she speaks, she feels she talks much louder than normal. She has a large family – ten children, fourteen grandchildren and three great grandchildren.

Bernadette used to work as a home-helper by day and as a waitress by night. Although she retired at the age of 65 she continued to work, both as a cleaner, and as a volunteer at the Manchester Royal. She only stopped when she was 83 years old.

She couldn’t go outside without her hearing aids, as she wouldn’t hear a thing., but she’s quite confident with normal social interactions — she likes to do her own shopping and when she needs to speak to the cashier she is always within a range where she can hear them to communicate effectively.

On the other hand, she used to enjoy going to dances and concerts, but now worries that she would feel isolated, as she wouldn’t be able to hear people above the background noise.

There are past familiar places that Bernadette no longer visits due to her hearing loss, but on special occasions or holidays a member of her family will accompany her, something she really appreciates, although she is aware she cannot have a family member present with her at all times.

Text taken from longer interviews with people with lived experience of hearing loss.

I had Meningitis in 1997 so it left me profoundly deaf since I was 26. I lived with my boyfriend. I was working – I’m a nail technician so luckily, it’s not a job I need to be using the phone or anything.

The Meningitis also affected my balance, so… I don’t know how to explain it. When you’re walking, if there’s some words on the wall you could read them even though your body is moving, but when I’m walking, everything else moves. I’ve not got proper control of my eyes.

My walking was affected– I was wobbling all over the place, it’s not so bad now… but still bad when it’s dark outside, I need to hold on to something. It’s like, you know when you’re drunk and you feel a bit top heavy, that’s what it feels like. But I’ve now become more used to it.

I don’t think anyone really understands how hard it is. I don’t know… you miss out on a lot. When people are talking there are things that I don’t pick up on, just minor things, so if someone was to say “oh they said this”, it wouldn’t mean anything. People don’t understand how it isolates you, just struggling. I don’t think people understand how lonely it can be. You just deal with it don’t you?

A thing that bothers me is that people can think I’m quite ignorant because someone might say something to me, and I might not know they’re speaking. It bothers me that people think I’m being rude.  Because you can’t tell from my appearance, I try and tell everybody “I can’t hear well, I can’t hear well”.  For example, I was at a course the other week and I emailed everyone beforehand to say: “look I can’t hear well but if you want my attention, please tap me first”.  I try and let everybody know.”

It has helped me with my communication skills- it’s brought me out of my shell a bit. I’m now not bothered about saying to someone “I can’t hear”.  Before I was quite shy, but now I’ve got to tell people… there’s no two ways about it.  When I do tell people, I have found that in general they do what they can to help.

After the Meningitis I was profoundly deaf and I was told I won’t get my hearing back, I got assigned a social worker…. something to do with benefits because I was so ill.  She tried to convince my dad to leave me as a deaf person. To keep me deaf, and not have the operation. My Dad was furious with her… I can’t really remember much about it, but he said he nearly chucked her out of the house. Anyway, when I was in hospital my Dad was reading the newspaper and there was an article about cochlear implants. I didn’t know anything about them nor did my Dad. Because he saw the article, he mentioned it to the Meningitis consultant. He put him in contact with Richard Ramsden, he’s the top ear man in Manchester. They wouldn’t have offered it to me if my Dad hadn’t followed it up. This was a long time ago – cochlear implants are quite common now. When I came out of hospital after having Meningitis it was only a couple of months later that I went back in for the implants.

So I’ve not really lived as a “deaf person”.

I’m fine in one-to-one conversations, but if there are a few people in the room, and everyone is talking, I struggle to follow what is being said…Like going out… if it was a really noisy pub or club I struggle. You learn to deal with it… You can’t hear anyone in clubs anyway!

Text taken from longer interviews with people with lived experience of hearing loss.

Listening to music. Socialising with friends and family. Using the telephone. Continuing working. Going out for meals. These are all basic daily essentials that many of us take for granted, as we could never imagine life without them. There are 800,000 people in the UK who deal with profound hearing loss every day. Margaret is one of them.

Speaking to Margaret gave me an opportunity to really understand some of the human consequences of hearing impairment.  As an audiology professional of the future, I believe a patient’s experiences could be improved by showing a touch of empathy and understanding about how individuals can be deeply affected by hearing loss.

Margaret comes from a background of nursing and of looking after others. She worked for the NHS as a ward sister in burns and recovering plastic surgery unit. The gradual deterioration of her hearing came as quite a shock to her, and ultimately, led to her being unable to work. This became the beginning of Margaret’s struggle to deal with her impairment and its consequences.

One factor that stood out to me most was how isolated individuals can become once diagnosed as hearing impaired. Many find that friends begin to ‘’drop-off’, as Margaret claimed. Margaret has overcome profound difficulties alongside the hearing deterioration and most of her time now is spent mastering the art of lip-reading.  Alongside the hearing aids, this has reformed her communication skills and helps her cope with daily ‘battles’, such as crossing roads and listening out for announcements on trains and so on.

I really cherished experiencing this snapshot of someone’s personal experience of hearing loss, and I valued the honest advice given by Margaret herself. Our chosen career involves meeting countless individuals. I believe that part of helping them to cope with their condition is to understand the full extent of how this psychologically and physically affects them. Simple social interactions may just involve asking them about their day or remembering key facts about them so they can feel more comfortable opening up about their impairment – resulting in a closer patient-clinician relationship. Crucially, I believe that we need to be cautious that stereotypes of deafness do not generalise the hearing-loss experiences.

Text taken from longer interviews with people with lived experience of hearing loss. 

Text taken from longer interviews with people with lived experience of hearing loss.

When 66 years old, Merlyn Bowen suddenly lost his hearing.

He thought his world was going to collapse.

The sudden loss came as a surprise as he had never suffered from tinnitus and had no family history of hearing loss. Losing balance while walking was one of his first symptoms. One day while at home, he realised he couldn’t hear the TV, and by the time he had an appointment with the audiologist he couldn’t hear at all. . His journey through hearing loss was definitely not what he expected.

“You think you’ll put hearing aids on and everything will be fine, but no. It’s not.”

Using a hearing aid the first time felt strange and confusing. He could not distinguish where certain sounds were coming from “I had to learn to listen all over again.”

He noticed his brain started reacting differently – incidents like focusing on the subtitles of a movie would make him think he could follow and hear clearly. The pronunciation of any new or foreign words people used had to be learnt and he felt like a small child learning how to speak. Talking to people on the phone for more than a minute had become impossible for him. In terms of music, he was able to sometimes “pick up” the beat of a song he hadn’t heard before but wouldn’t be able to know for certain if it was a fast or slow beat. Songs and people he was familiar with prior to his hearing loss were easier to follow. Talking to strangers, however, took time to get used to and was “tricky business”.

For Mervyn, accepting hearing loss is a mixture of positive action and self-motivation. He said there was no point waiting for a miracle to change things back to how they were – but to accept you were now a different person.   His hearing loss had a great impact on his job. As a psychiatric nurse listening to the patient ‘straight and plain’ was crucial as if you missed the smallest detail in a patient’s opinions and views, it could have serious implications.

Eventually after regular checkups from the medical team, he was told he would not be able to continue working and so he retired. This was a really difficult time for Merlyn as he had thoroughly enjoyed his work.

A father of two, he expressed how his loss made him feel like a different person among his family. He couldn’t sit or have a proper conversation with his daughters and eventually communicating via texts became the norm. People found it hard to cope with a friend becoming deaf.  Friends would always try to nurse him, but he valued his independence and didn’t want anyone’s pity. He asked people for help when he needed it but wanted to do as much as he could himself.

‘I’m only deaf when I go out. When I’m at home I’m not’ he said with a laugh. Merlyn is inspiringly positive and never lets his hearing loss affect his approach to life. When asked about whether he was used to wearing a hearing aid, he replied ‘Sometimes I don’t even remember they’re there’. However, his hearing loss impacted on his love of driving – he found driving very uncomfortable, without his sense of hearing and the concentration he had to employ to compensate for this, drained him.

He said that the main problem a lot of deaf people face is when dealing with health professionals. Each patient is different, and their degree of hearing loss varies on such a wide range, they should be dealt with each as an individual. Merlyn explained that whenever his hearing aid was adjusted, it was like going back to the beginning once again, and that it took time to adapt to any new changes. He compared it to tuning a radio, and how significant it was to reach the right wave. Doctors were often the worst culprits and would continue talking to him without even realising he couldn’t hear them.

During the initial years of hearing loss, he joined many courses run by local authorities for those with hearing difficulties and helping them learn how to cope. This enabled him to meet others facing various degrees of hearing impairment.

This was a truly positive experience and it provided him with the skills and the confidence to cope with hearing loss in a “difficult world”.  It also allowed the opportunity to see how others coped with deafness and to realise there was “life after deafness”.  Merlyn went on to train as a challenge deafness facilitator.

Merlyn was very passionate about making videos. Hearing loss evidently affected this hobby, as he was unable to edit sounds and speech accurately. After using hearing aids, he developed a new obsession with solving puzzles. He says this newfound pastime is beneficial as it helps keep his brain stimulated. Staying positive, Merlyn mentioned that he had already begun working on videos once again.

Merlyn said his hearing loss has made him appreciate life more, and that if you try to do the best you possibly can, you will survive. There are plenty of encouraging people you will meet in the world, and no matter how vastly the world has changed and evolved in speech and language, “there are always good people around to help.”

Text taken from longer interviews with people with lived experience of hearing loss.

I first lost the hearing in my right ear in my mid 20’s. At first it was thought to be Meningitis, but no action was taken at the time. When I was 30, I experienced a sudden hearing problem in my left ear as well. This improved partially over a short period whilst I was on medication. The hearing loss in both ears was then found to be due to NF2, Neurofibromatosis type 2, which are benign growths usually on both hearing nerves that transmit sound to the brain. As a result of the initial improvements in my left ear I did not require a hearing aid for a further five years. Further losses did then occur over time, and I began to use a left side hearing aid, which was sufficient for about 10 years.

A hearing aid on the right ear was not found to be of any benefit since any amplified sound from it was of poor quality.

As the hearing in my left side was not perfect and became progressively worse, I would sometimes misinterpret what people were saying. I used to be employed as a chartered chemical engineer for BP and before retirement in 2009,

I managed to find ways of working without too many problems. I could manage one-to-one conversations, but it was difficult speaking on the telephone. Colleagues at my workplace noticed the deterioration in my hearing before my family did.

I became increasingly dependent on my wife for hearing at home and with friends, where she would cover me in difficult situations. Sadly, she died of cancer in early 2010, so this led to further difficulties for me including depression, and the frustration of not being able to hear what was being discussed.

I found that social situations were particularly challenging especially meetings in large rooms where there is background noise. If I was positioned too far away from the person speaking, this created difficulties as well. Mixing with people was hard. People who are in my situation tend to bottle things up and don’t like to admit deafness. Where possible I tried to behave as normally as possible. There were several ‘tricks” I had; I tended to try to dominate conversations (as I speak better than I hear) Out of desperation I would sometimes try to change the topic if I felt I had lost the thread of the discussion.

Although I have not attended any lip-reading classes, testing has proved that I have subconsciously made use of it through trying to determine what was being said, therefore becoming an “oralist”. I came to realise the importance of turning my back against the sun, as this makes it easier to lip read when the sun is shining against the person’s mouth. I can follow speech more easily alongside accompanying text, such as subtitles or following a textbook.

I tend to use the internet and email to communicate. This was, and still is, ideal for me: People with normal hearing use these methods of communication regularly. I use a mobile phone for sending texts, but not for making phone calls.

Having hearing loss can make a person such as myself feel isolated. I felt that having hearing loss made me miss out on things and I lost a sense of pride. Lack of motivation became a problem for me.

I had a cochlear implant fitted in July this year, which has helped me tremendously, but it does not totally replace hearing as it once used to be. The problems previously mentioned still apply, but to a lesser extent. In terms of the amount of speech I can hear, recognise, and understand,

I would say that after having the implant my ability has risen from approximately 20% to 80%. There is still much room for improvement. I knew and understood from the outset that response to the implant is an ongoing journey from sounding like “duck” to “human” and I am told that this is normal. For me it was more of a step change to improved hearing rather than a ramp change.

I still have issues using the telephone, as it is hard to follow conversations, but it is much easier if the person on the other end has a familiar voice. I was advised that I could benefit from further auditory training; this is currently being investigated. Without doubt though, the implant has already improved my confidence and motivation.

I miss music, as this is still difficult to interpret clearly. I was told that the implant was primarily for speech recognition and that applying them to music is another step up on the gradual learning curve. The two factors here are identification of pitch (i.e. tuning into the correct frequency for identifying the right musical note precisely) and recognising the quality of sound due to different harmonics from various musical instruments. Again, this takes time to learn and to familiarise. I have been advised to start with small ensemble music like a folk duet as opposed to a full symphony orchestra. Progress is slow but moving forwards. As with speech, once the brain has recognised what it is hearing then it locks on and tries to fill in the gaps.

In terms of performing music as opposed to just listening to it, one instrument that I played before starting to become deaf was the bassoon. As a solo woodwind instrument, with a large orchestral setting and where the performer is responsible for intonation, this is definitely a difficult hurdle to overcome quickly. Singing has more potential, but the singer must be able to sing accurately in tune, which can be difficult. Playing something like the piano, which I do like to improvise on, is possibly the easiest starting point since pitches are fixed from the tuning of the strings.

As my progress with the implant continues, I am hoping to get involved in more external social and work activities, possibly including some charity work and music in the future.

I am confident and hope the implant will continue to improve my life.

Text taken from longer interviews with people with lived experience of hearing loss.

I think over the last twenty-four years I have experienced every type of dizziness from gripping vertigo, drop attacks, continual daily dizziness, tinnitus and deafness.

I have bilateral Meniere’s disease, Multiple Sclerosis and benign paroxysmal positional vertigo. Dizziness is with me all the time and was severe enough that I had to medically retire from my job as a critical care nurse and also rendered me unfit to drive. This often invisible symptom weaves into everyday life of someone like me, as our vision, movement and senses are constantly working, even when our eyes are shut (this is also unpleasant).

Equally the loss, grief, fear and anxiety that go alongside with these symptoms can be equally as distressing I feel. But what was once the menacing enemy that attacks me is now viewed in a friendly manner, something that needs love, compassion and support. It’s here where my Mindfulness practice has become a solid foundation of my practice as I work with each moment in a softer dance rather than a continual fight.

Each moment of awareness gives me the opportunity to open up to the experience of dizziness, nausea, tinnitus and deafness rather than to restrict in fearful patterns. Below are ways I cooperate with the way my body works and over time and application I can say have truly made my life both happy, meaningful, loving and joyful.

• When things are intense and scary: letting my attention drop down to my feet and gently talking to myself about what is happening and that I will be ok. The breath then becomes paramount for me here as I let it soothe the distress that I am feeling. With each slow breath I will use a mantra of anything soothing, like “Calm and relaxed”. This will give my mind something else to anchor on whilst I manage the severity of the symptom.
• Talk to people, be honest. I used to hide the dizziness feeling embarrassed and ashamed. This only fueled the vertigo with worrying and opening myself to the experience and sharing helped to reduce the fear that a cycle of chronic dizziness can create. Counselling and art therapy were very helpful to me.
• Pacing was a big aspect that helped, and I still learn all the time about this practice. Personally, becoming aware of cumulative demands, I was placing on my body rather than the aggressive ‘pushing through’ attitude is a mindfulness practice that has made a huge impact on my quality of life and my family too.
• My mediation practices have been the foundation and most influential part of my well-being for thirty years. These practices change, evolve and adapt as my needs do. But whether it’s a Breathworks health course or some gentle relaxation techniques there is an unlimited potential of goodness to be found with yourself and the breath. Dizziness creates a fight or flight response naturally within the body so practicing everyday with meditation, guided imagery and relaxation can work effectively at settling some of this stress response.
• Incorporating everyday activities, I love that I can manage like my art, writing poetry/prayers. Art as a creative expression has been an important aspect of how I can understand the many layers of the Meniere’s disease. Not only as a way to deepen my connection to being mindful but by also letting go of the fearful patterns that come along with distressing symptoms. The art by making a mark allows flow to happen both in my inner world and outer. The painting of the blue swirling vortex (below) is one such expression, and it has helped me to accept what at times I felt was unacceptable.
• Taking a moment that is pleasurable as significant and looking for the comfort and ease that it can bring. It’s easy for these to go unnoticed when worry wraps around your mind. Exploring new ways that bring you joy, lightness and that make a smile arise in your face. It’s very hard with the physical distress but small, beautiful moments arrive each day and they have a potency that can change how we feel.
• For me physical movement has changed drastically over the years, but I still have a daily practice that is fresh, open and helpful at maintaining as much mobility as I have. I can’t fall over on the floor and often do the physio, yoga, stretching, weights etc lying down. I use an electric wheelchair and also have severe brittle asthma, so I need to be very creative about movement, buts its possible and it makes me feel so much better and ironically more balanced.
• Mindfulness has helped me to be aware about what my body needs and to listen to the wisdom that she wants to share. Physically dizziness can lead to be feeling less confident in the body so building new ways to allow the body to move has helped me to feel better in all ways.

Now I invite the dizziness to accompany me on my day as I know we have to work in harmony together. I am now mostly a lot more at ease within my body despite it significant challenges and Mindfulness is that place of stability that I can keep returning back again and again.  

The Noise begins is an App created by PhD student Dominic Gately as a response to his own experience of tinnitus. It is an experiment, an attempt to create something beautiful out of something debilitating. It is about tinnitus, and is also a sonic escape from tinnitus, inspired by research.

More details about The Noise Begins here.