Please Sign the Petition for More Tinnitus Research!

Give People With Tinnitus the Hope for a Cure!

This week is Tinnitus Week.

One in eight people in the UK has tinnitus and for some, the condition can be completely life-changing. Studies have found that people with tinnitus score significantly higher on the depression and anxiety scale and lower on self-esteem and well-being.

Here I am, talking about the effects tinnitus has on my life:

 

The British Tinnitus Association are focussing heavily on the importance of moving forward with tinnitus research to ultimately find a cure. They have launched a petition pushing for the government to commit more funding to tinnitus research. 

To show your support, please sign the petition for more research into finding a cure!

It’s so important to so many people: http://chng.it/HSMDM8Gv

You can also help reach more people by sharing this post and encouraging others to sign up too. Let’s make a real difference this #TinnitusWeek!

Thank you!

 

Working Together to Find a Cure for Tinnitus

British Tinnitus Association Manifesto Roundtables 2020, kindly hosted by Sir John Hayes MP. 

A discussion by Carly Sygrove, creator of the My Hearing Loss Story blog, and advocate for people with hearing loss and tinnitus. 

Tinnitus affects one in eight people in the UK, yet there is currently no cure.

My own tinnitus story began three and a half years ago when I experienced sudden hearing loss in my left ear. The moment I lost my hearing, I simultaneously gained the unwelcome whooshing and ringing sounds of tinnitus.

Following my hearing loss, I started to write a blog in order to share my experience of living without full sound and with other associated issues, including tinnitus. Through my blog, I have connected with people from all over the world whose lives have been affected by hearing loss and related symptoms. Tinnitus is one of the most common reasons why people contact me to seek support. Living with such an intrusive, yet invisible condition can be extremely difficult, and for some it is debilitating.

Although there are management techniques and devices that can mask the noises of tinnitus, there is nothing that can actually eliminate it. Knowing you have a condition for which there is no cure can be a tremendous mental weight to bear.

Tinnitus Research: How Can We Move Forward to Find a Cure for Tinnitus?

As part of the preparations for Tinnitus Week (3rd-9th February 2020), I was invited by the British Tinnitus Association (BTA) to attend a roundtable event at the House of Commons.

I would be representing people with tinnitus and joining researchers, other people with tinnitus, politicians, public health institutions and research funders, to discuss how we can progress the search for a tinnitus cure.

The Roundtable Event – House of Commons, Thursday 16th January 2020

Tinnitus roundtable

The event consisted of guests at two parallel tables, discussing how to move forward with tinnitus research.

Bringing together participants from a wide spectrum of backgrounds and specialisms encouraged an active and productive discussion. There was a focus on both the technical aspects of developing a cure and the personal opinions of those who are living with the condition.

The Technical Aspects of Finding a Cure

Although the participants in the discussion at our table were from a variety of backgrounds and with different associations with tinnitus, we all agreed that a tinnitus cure means silence.

Listening to the views and priorities of those involved in research, I learnt so much about the technical challenges of finding a cure. There are a number of issues which can impede the progress of research, and

there are matters to be considered before progressing studies further. Some of the topics discussed are outlined below:

  • The Importance of Research Into the Subtyping of Tinnitus

There isn’t just one type of tinnitus, in fact, there are many different forms of the condition.

Tinnitus may occur as a consequence of excessive noise exposure or be caused by disorders which affect the brain’s auditory function. Some types are related to the sensory system and others are a result of muscle contractions. There are also subtypes of the condition such as musical and pulsatile tinnitus. More focus needs to be placed on further identification of tinnitus subtypes in order to facilitate more targeted research. 

Co-founder of Tinnitus Rooms support group, Louise Hatch stated, “We need funding and research into subtypes of tinnitus – it needs serious attention in its own right.”

  • Difficulty Measuring the Effects of Tinnitus

Currently, there is no objective way to diagnose or measure the effects of tinnitus.

The effects of tinnitus are subjective and hence hard to measure. For some people, the symptoms of tinnitus may not affect their daily lives and others it can have a huge impact. This doesn’t necessarily mean however, that one patient’s tinnitus is more severe. Some people are able to manage tinnitus more successfully than others.

The severity of tinnitus for patients may also fluctuate due to other factors, such as tiredness, weather changes and mindset. Since the effects of tinnitus are hard to measure, it is difficult to compare results in studies and for this reason, efforts to make advancements towards finding a cure are hindered.

  • The Pursuit of Identifying Biomarkers for Tinnitus

At present, a biomarker for tinnitus has not yet been determined.

A tinnitus biomarker is a characteristic identified in blood or the body that provides a measurable indicator of the presence of the condition.

The presence of a biomarker would be physiological evidence that a patient has tinnitus. If researchers are able to understand the mechanism of tinnitus, then they will be able to measure changes or progression of the condition, and the effectiveness of treatments can be evaluated objectively.

  • The Need for a Tinnitus Database

Dr Charles Large (CEO, Autifony Therapeutics), highlighted the benefits of creating a national tinnitus database with regards to moving forward with research:

“Absence of a UK-wide register of tinnitus means patients are being missed. Research trials would be the first to benefit but more importantly, it would benefit the whole tinnitus community.”

  • The Nature of a Cure

It is not yet known what form a cure will take. Tinnitus researcher, Dr Will Sedley, explained that to find a cure, researchers need to understand every level of interaction between the brain and ear, with regards to the condition. They need to discover a way to teach the brain to distinguish between real sounds and tinnitus and to filter out the latter.

The cure could take the form of a pharmaceutical drug or perhaps a further-developed type of sound-based therapy. We just don’t know yet.

  • More Tinnitus Awareness Amongst the Medical Community

Dr Will Sedley stressed the need to make tinnitus a more attractive area of research to medical students. He stated that “This is one of the most unsolved medical problems”, yet he doesn’t remember tinnitus ever being mentioned in medical school, or any question referring to it in exams.

  • Where to Allocate Funding?

If the government provides more funding to tinnitus research, it will need to be decided where the money will be allocated.

Tinnitus is not an illness in itself but rather is a symptom of a pre-existing condition, such as hearing loss, stress, inner ear disorders or migraine. Since there are various potential causes of tinnitus, do we put money into restricted tinnitus research or use it to fund other groups of research with a focus on illnesses where tinnitus may occur as a consequence?

By funding other areas of research, there is a possibility that a cure for tinnitus could be found as a result of curing an underlying condition.

What People With Tinnitus Want to See

Before the event, I spoke to some of my blog contacts, and for an opinion, much closer to home, I also contacted my dad, whose life has recently become affected by tinnitus.

Detailed below are some of the hopes people who are living with tinnitus have for future research, which largely coincide with the opinions of those at the event, who work within the area of tinnitus support:

  • More Support From GPs

A large number of my contacts expressed a desire for more help from the medical community for people with the condition. Some, including my dad, had experienced discouraging consultations with their doctors and were simply told to “get used to it”. Many people hadn’t been offered advice or support on how to manage tinnitus nor had they been referred to sources of emotional support. Perhaps successful guidance from GPs begins with specific tinnitus-management training?

During the discussion, Megan Gill (Tinnitus Hub support forum representative) emphasised how “Patients want to be heard and have a voice in research.” She spoke about the desire patients have to be listened to, and to be part of the journey of rehabilitation and eventually a cure.

  • Tinnitus Awareness and the Effect on Mental Health

Megan stressed the need for more awareness of the potential impact of tinnitus on mental health.

According to a survey carried out by Tinnitus Hub, 64% of tinnitus patients reported that the condition had caused them mental health issues, with stress, anxiety and depression being the most prevalent.

On this theme, a large number of my contacts emphasised the importance of having the hope of a future cure.

Of course, whilst a cure does not currently exist, acceptance of the condition is key in moving forward and it is important for those affected to find a way of managing their symptoms to improve their quality of life. Yet, the reassurance that researchers are working to find a cure, can give those affected a level of mental comfort.

More awareness of the interrelation between tinnitus and mental health issues could have a positive effect on fundraising efforts and more researchers may be likely to embrace the challenge of finding a cure.

  • Prevention Measures

Speaking as a voice for musicians and DJs, Anne Savage highlighted the importance of promoting tinnitus prevention measures. As a Plug’em ambassador, Anne is passionate about reducing the stigma of wearing earplugs to protect hearing in environments with potentially dangerous volume levels such as gigs, festivals and clubs. In the discussion, it was suggested that perhaps there is a need for more strict decibel restrictions in the UK.

As a former teacher, I wonder whether this is something that needs to be addressed in schools, starting with a focus on volume levels in the classroom?

  • My Thoughts

Personally, I hope for more international interest in tinnitus research. I feel that this is a worldwide condition which needs a worldwide solution. I’d love to see collaboration between research institutions around the world where key focus areas of study are agreed. 

Surely, creating strong communication links in the research community and sharing outcomes and discoveries, could help drive research forward with more dynamism and impact.

Moving Forward Towards “a World Where No One Suffers From Tinnitus”

To summarise, the main priorities from the discussion were as follows: 

  • Create a UK tinnitus registry
  • Focus research on identifying biomarkers for tinnitus
  • Raise awareness of the effect of tinnitus on mental health
  • Promote prevention measures, e.g. more strict decibel restrictions in the UK

The British Tinnitus Association will combine the recommendations from both discussions and present them to government ministers in order to move forward the search for a tinnitus cure. 

The Secretary of State for Health and Social Care, Matt Hancock, has already taken an interest in raising the profile of tinnitus research on the political agenda. “I am very happy to look specifically at the case for increased research funding into tinnitus and to work with [Sir John Hayes] on it,” he responded, following the roundtable event.

It was an honour to take part in such a lively and positive discussion. I feel that bringing this level of awareness to tinnitus is a very positive step towards finding a cure. And, for me, I have a little more hope that I will one day be able to enjoy silence again.

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This article was recently featured on The Limping Chicken – the world’s most popular deaf blog! 

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.

Exciting News! – My Hearing Loss Story is Now on Facebook!

Please take a moment to Like, Share, Follow, and Comment!

Dear readers,

I’m excited to tell you that I have recently created a Page and a Private Group on Facebook for my blog! Information about both of these new features is outlined below.

The Facebook Page

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This is simply a page where you will be able to view my blog posts. Anyone can access this page and I am hoping that making my blog accessible to Facebook users will mean that I can grow a wider audience for my writing.

To view the My Hearing Loss Story Facebook Page, please follow this link

The Facebook Private Group

Screenshot 2019-11-28 at 21.00.04 - Edited

This group is not only for readers of my blog but is for anyone whose life has been affected by hearing loss. 

I hope to develop a community of people of all ages, from all over the world, and with different types of hearing loss. This is a space where you are invited to share your own hearing loss stories, ask questions, join discussions, and offer advice and support to each other.

This is a private group, which means that anything discussed will only be accessible to people who are in the group – what happens in the group stays in the group 😉 

To join the My Hearing Loss Story Facebook Group, simply follow this link and I will add you as a member.

Since the Page and Group are new, I’d really appreciate it if you took a moment to Like, Share, Follow, and Comment! Thank you as always for your wonderful support.

I hope to ‘see’ you all soon and I look forward to sharing stories!

 

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CROSSSD Study – You Can Help with Vital Research!

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I recently came across an interesting research project, whilst browsing on Twitter. The purpose of the study was to help develop the research of treatments of single-sided deafness (SSD), making it easier and quicker to find out which treatments work best and why.

As someone with SSD, who has been unsuccessful in finding an aidto help overcome the difficulties imposed by this type of hearing loss – namely challenges in localising sounds and understanding speech in noise – I was keen to do whatever I could to help support this research project.

The study is part of a PhD being undertaken by the audiologist and researcher, Roulla Katiri, and is supported by the National Institute for Health Research (NIHR), Nottingham Hearing Biomedical Research Centre (BRC). I wasn’t sure whether I would be able to participate since I am currently living in Spain and the project is based in the UK. So, I sent a message to Roulla to see if there was anything I could do to help. Roulla’s reply was simple and clear – since I have been diagnosed with SSD over 12 months ago and have trialled a hearing aid, I was a perfect candidate to take part in the consensus.

Here’s a little bit more about the study…

The purpose of the study is to develop a common set of ‘outcomes’ to help researchers decide whether a treatment works. In the field of treating SSD, ‘outcomes’ are the things that should be measured when deciding if a hearing aid or an auditory implant is effective.

Examples of ‘outcomes’ are:

  • The ability to localise sounds
  • The impact of SSD on quality of life
  • The ability to hear in noisy places such as restaurants

Different research studies often measure different outcomes, meaning it can be difficult to compare or combine measurements. This makes it hard to identify which treatment works best. If all future studies measure the same common set of ‘outcomes’, research can be moved forward faster.

This is all explained really nicely in this short video (2:19 running time):

The information gathered from this study will help others with SSD; and audiologists, like Roulla, to be able to recommend the best treatment for SSD, when considering the individual requirements of their patients.

My experience completing the study…

As a participant, I was provided with very clear information about the purpose of the study, how to complete it, and how my information would be used.

The survey is comprised of tables of outcome statements like the one shown below:

Snapshot 1

All I had to do was score the outcomes as to how important I felt they were to measure, for SSD treatments according to my own experience. To do this I was required to select a score on a 1 – 9 importance scale, by simply clicking on the relevant part of the table.

Before completing the study I was a little concerned. This is a cause I am very passionate about, and I was worried about making the wrong selections. However, I soon realised that there couldn’t be an incorrect answer – my opinions were all that mattered. I was also slightly worried I might change my mind about some of my scores, after submitting the survey. But, should this be the case, there was going be a second round of the study, where I would have the opportunity to view a summary of the other participants’ scores for each outcome. If I wished to change any of my scores, after reconsidering my initial decision, I would be able to do so in Round Two. I really couldn’t go wrong!

The phrasing of the outcomes was easy to understand and the survey took approximately half an hour to an hour to complete. If I felt particularly strongly about any of the outcomes, I also had the opportunity to add a comment. If I had needed to take a break, there was the option to save my progress and to continue when I had time.

Who can take part?

You can help if you are:

  • A member of the public with severe-profound SSD for over 12 months
  • A healthcare professional with experience of SSD, such as: 
    • Audiologists
    • ENT doctors
    • Funders, relevant charities workers e.g. Ménière’s Society, researchers around the world who work in the field of SSD

If you don’t satisfy any of the above criteria, you can still help by increasing awareness of the CROSSSD study. You can share this blog post, or the relevant information, on your social media platforms. Or, you can simply mention the study to friends or family members who have SSD, or who know someone who does.

It is an international study. The more diverse the applicants, the better the overall representation of people will be – from all walks of life, all ages, and from around the world. If the survey is completed by people from a wide variety of different backgrounds, this will give researchers a better understanding of the key outcomes that will help provide effective treatment for the greatest amount of people.

A final note…

It’s so great that this research is being conducted and I am really happy to be able to help contribute to this study and to give my opinion on what really matters regarding treatment for SSD.

The unique challenges that come with living with SSD are not limited to hearing difficulties. People with SSD may also be living with other related issues such as tinnitus, sound sensitivity and fatigue. Those affected may experience psychological and social issues due to difficulty following conversation, which can make communication at social events exhausting, causing stress, anxiety, and reduced self-esteem. Hearing difficulties and mental health issues can also put stress on professional and personal relationships. And, possibly the most difficult issue is that SSD is invisible; people with SSD may feel alone and isolated in their daily struggles.

Please, take a moment to share this post or the information below. And, if you satisfy the criteria to participate, please take the small amount of time to complete the study. It’s quick. It’s simple. Your help could vastly improve the lives of people with single-sided-deafness.

For more information, visit the following website: www.nottingham.ac.uk/go/CROSSSD

Or contact Roulla to register your interest: roulla.katiri@nottingham.ac.uk

The study will close beginning of November 2019.

Hey Rosey – My Music Festival Story

I was dancing! I was smiling! Some of my hearing loss grief was lifting, and this stifled part of my personality; this love of live music, was being reignited.

The room was small with black dividers forming the walls. It was simply furnished with a black coffee table and, in contrast to the dark surroundings, two white sofas which lined adjacent walls and were pushed together in the far right corner of the room. The air was stuffy and I moved my hair back from my forehead with my hand. Sitting on one of the sofas, I took a sip of my gin and tonic in an attempt to remain composed and to try and coax my fantastically overwhelmed grin to feign a cool smile. A sense of relaxed intimacy filled the air as more people entered the room, and music began to sound in gentle tones. Despite the warm atmosphere, a confused mixture of feelings had taken hold of me: astonishment, excitement, and absolute joy. I was a stranger to this level of attention, this kindness.

At the beginning of this year, I was involved in making a radio documentary for the BBC World Service, which detailed some of my experiences following my sudden hearing loss. During a moment in the recording, I found myself in an emotional situation. I was in an empty music venue and was explaining that I would no longer be able to go to live music events, due to my sensitivity to loud noises; a consequence of my hearing loss. I realised I would never be able to see my favourite band, The National, play live.

Many aspects of life have changed for me since the day I lost full sound. I have found that it is often the small, more personal effects of losing my hearing that carry the most impact. Tiny chunks of my personality have been broken away by some of the cruel repercussions of my hearing loss. When dealing with tinnitus, dizziness, ear pressure and sensitivity to sound, I sometimes feel that my focus is driven away from the things I love; the intrinsic pieces of my personality that make me, me. I have always enjoyed music, in particular going to summer music festivals. This love of music had been repressed; forced into quietness by the accompanying conditions to my hearing loss.

A few months after the documentary recording went live, I was contacted by the National’s manager and was invited to go backstage to meet the band before a show they were playing at MadCool; a music festival in Madrid, where I live. Of course, I was very excited at the prospect of meeting the band. Yet, it was also difficult to imagine this as an experience I would be able to enjoy, or perhaps even tolerate. After all, I had spent almost three years avoiding loud noises and live music events. But, it was a wonderful opportunity and one which I couldn’t refuse. I explained my sound sensitivity issues with the tour manager and was told that, if I felt comfortable, after the Meet and Greet I could watch the concert from the side of the stage where it would be much quieter than the audience area.

The weeks leading up to the event, I was nervous and excited. I was nervous about the festival noise and volume levels. I was nervous about meeting the band. I was determined to enjoy this day as much as possible. I was in a privileged situation and was going to make the most of it, though I knew the day would bring challenges.

As well as having noise sensitivity issues, I have also been advised by specialists against attending live concerts. I needed to ensure that I wasn’t going to be in any position that could cause noise-related hearing damage. And, above all, I needed to feel comfortable. I was going in prepared. I packed a bag with my earplugs and some ear muffs. I was ready.

My boyfriend and I arrived at the festival on a very hot day. The vibrations of the sounds as we approached the outdoor venue caused some pain in my ears; I had forgotten the strength of live music. Luckily, we didn’t have to spend much time in the main grounds of the festival.

After enjoying some time in the artists’ area, the band’s tour manager came to collect us. We followed her as she moved briskly, and within seconds we were walking down a black corridor with labelled doors on either side. I glanced up and read one of the labels: ‘The Smashing Pumpkins’. Oh my goodness! – We were in the artists dressing room area!

We reached the end of the corridor and I stopped for a moment at the realisation that I was about to meet my favourite band. “This is really happening, isn’t it?” I said to my boyfriend. Until this moment, I hadn’t quite believed it.

We turned left and walked straight into The National’s dressing room. It felt like entering a scene from a film. The first person I saw was one of the guitarists, Aaron, standing in the doorway playing his guitar. He greeted me and introduced himself. We were quickly introduced to the other band members and I had a brief chat with Matt, the lead singer. My boyfriend was busy talking to some of the other band members when Matt asked me to sit down on one of the white sofas. He told me to choose a good spot. I didn’t know what he meant by this, so I placed myself to the left of where he sat down (my hearing side) so that whatever happened, I would have some chance of hearing him.

Matt was joined by Gail, one of the female vocalists on their new album, and they were handed a sheet of song lyrics. I read the title: Hey Rosey.

And then, without any announcement, they began to sing. Music played in beautiful acoustic notes and the gentle tones meant that I was able to listen and enjoy it without pain. I thought perhaps the band were rehearsing before going on stage. But, very soon I realised they were playing solely for us. There wasn’t going to be a group of special guests as I’d expected – we were the only ones! This song was ours. I took a sip of my gin and tonic.

When Matt, the lead singer, began to sing I was reminded of a time a few years ago when my boyfriend bought me some new headphones. They were much better quality than I was used to, and to test the sound quality I played a song by The National. The music sounded so clear, almost like I was sitting in the room with them. At the time I commented that it was like a private serenade through my headphones. But, at this moment, I realised it was nothing close.

I tried to take it all in; looking at the faces of the band members, listening to the music, and enjoying the atmosphere. I wanted to be able to remember these moments; sharing this intimate display of creativity.

After the music stopped, I continued talking to Matt. He asked a little about my condition and he commented on how generous he thought I had been in sharing my story through the documentary.

Continuing the theme of the documentary that had brought me to this moment, I asked Matt whether there was a sound that he treasured. He paused for a second. Then suddenly he was visibly struck with emotion. He threw himself back in his chair and held his head in his hands, and replied, “The sound of my daughter giggling…her giggling.”

Soon, we were ushered into a black van and were taken to the backstage area. The stage manager showed us the setlist of songs and explained where we could stand on the stage. I was hoping I would be able to enjoy this, without the worry of hearing damage or sound sensitivity issues.

We watched as the band entered the stage, a few metres from where we were standing. Then the concert began.

I was wearing my earplugs and was able to tolerate the volume level of the music. From the side of the stage where we were standing, the vocals were sometimes difficult to hear, yet the feeling of music dancing through my body filled me with excitement. This energy, I hadn’t experienced for almost three years.

Matt dedicated the song Hey Rosey to me. Unfortunately, I didn’t hear him say my name, but my boyfriend alerted me, and I saw Matt waving. I waved back with unreserved delight. I was dancing! I was smiling! Some of my hearing loss grief was lifting, and this stifled part of my personality; this love of live music, was being reignited. I was filled with exhilaration. I thought I would never be able to go to a live concert again, and here I was, watching my favourite band from the side of the stage like a rockstar!

I have come so far on my hearing loss journey. In the documentary, I spoke about how I was trying to be aware of the sounds that I love, and to not take them for granted. This love of music will always be a part of me, and I hope to be able to continue to appreciate music throughout my life, whatever my hearing capacity. And, if this was to be the last concert I’ll ever attend, rest assured I enjoyed every moment.

Thank you to The National, Shaun Gibson from Straight and Narrow Artist Management, AJ Faber, and everyone else who made our backstage experience so special. Thank you also to Chelsea Dickenson from Audio Always who, without her documentary, this would never have happened. It was a truly amazing experience and one which I will treasure. You have all made my smile brighter.

Click here or below for the dressing room acoustic session.

 

 

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How to Talk to People with Hearing Loss

I was recently contacted by Julia Florentine who has just published a book with her mum and her colleague. The book is for friends and family of people with hearing loss on how to communicate effectively and is entitled “How to Talk to People with Hearing Loss“.

The purpose of the book is to explain what people with hearing loss find useful from their communication partners so that the reader can learn to be a better communicator. It aims at helping people to understand the communication difficulties people with hearing loss (in particular, age-related) may have, so that they are equipped with the tools to speak more effectively with someone without full hearing.

Although my hearing loss isn’t age-related, I can still identify with the information in this book and think the tips would be relevant to communicating with someone with any form of hearing loss.

Among other things the book outlines ‘Two Major Myths About Hearing Loss’, ‘Five Most Common Questions Answered’ and ‘Ten Tips for Effective Communication’.

The section I found most relevant to my needs was ‘Ten Tips for Effective Communication’.

I’m sure with different types of hearing loss, the weight of importance will be concentrated on different areas, yet all points carry significance. The main tips that I would like people to know are 6, 7, 8 and 10:

6. If I do not hear you the first time, repeat with different words. Don’t say the same word I did not hear over and over again.

7. Try to limit or avoid background noise. I do not hear well in noisy environments.

8. Talk to me on the side of my better ear.

10. Hearing under adverse conditions can be exhausting. Sometimes, I need a break.

The book doesn’t just provide the tips, it also examines them; suggesting and explaining helpful actions.

I’ve been thinking about the information highlighted in number 10 regarding listening fatigue and realised that this is something I haven’t really talked about to anybody, apart from those who are close to me. I think the reason for this is because there are many other points that I feel others need to know. In particular, I inform people of my hearing side and the fact that I may need to sit close to them to hear them and to watch their lips for clues. I try to make sure I tell these two pieces of information to anyone who I will be having a prolonged or regular communication with. These details are conveyed for practical reasons. The fact that I am tired, doesn’t seem essential to explain.  It seems more like a personal detail.

Yet, the effort involved in listening can be very demanding. Even just meeting with a friend for a coffee can leave me feeling exhausted, and I often have to go home afterwards to lie down and rest my ears and brain. A great amount of concentration is needed to hear the main aspects of a conversation, to process this information, whilst trying to focus on keywords over background noise. It can be tiring attempting to keep up with the change in context, at the same time as endeavouring to hear questions; striving to give appropriate answers. During any conversation, I continually urge my tinnitus not to steal my attention, I deal with sound sensitivity issues, and all the while trying to look at ease with the situation. And so, it is not surprising that trying to follow a conversation, let alone joining in with it, can be quite a mission for someone with hearing loss.

I am aware that people with hearing aids may turn them off when they get home after work or being in a noisy environment, and this allows them to rest their ears and takes away the pressure of trying to listen or respond to conversation. I am quite envious of this. It must be a relief to be able to tune out after being around noise all day. Similarly, I often wear an earplug in my hearing ear when carrying out noisy tasks, such as washing dishes – this gives my ears a rest from noise.

I found it interesting that the point about listening fatigue had been included in the book, as it is not really a tip, but rather an insight into life for someone with hearing loss. It is a point that I would like others to know about me, but one which I rarely voice. I would like people to know that it is an effort to converse. Unlike some issues related to hearing loss, everyone can relate to feeling tired. Perhaps this understanding and awareness could promote empathy.

If you would like more information about the book, it can be found on Amazon, through the following links:

UK: http://bit.ly/hearinglossbook

US: https://amzn.to/2HzgBXd

Spain: https://amzn.to/2w6Yp1W

I hope Julia’s book will help enable more effective communication between those with hearing loss and their communication partners.