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.

My New Nose

Last year, on Valentine’s Day, I had my septoplasty. I had a deviated septum, which veered to the left; my deaf side. For as long as I could remember, I had been unable to breathe through my left nostril – something I hadn’t paid much regard to until my hearing loss and the onset of the associated feeling of pressure in my ears and head.

The pressure is often the most difficult symptom to manage. It is more prominent than my tinnitus. It is ever-present, unlike my sound sensitivity for which the degree of severity is dependent on environmental sounds. With more pressure in my ears comes more dizziness. I would try almost anything to help relieve some of this discomfort as it is extremely hard to disconnect from.

Following a consultation with a particular specialist, in which he stated with confidence that the reason for the feeling of pressure in my ears was because I couldn’t breathe properly, I had elected to have the septoplasty operation. Not all specialists had given me this opinion, and so I tried not to get my hopes up regarding an improvement in my ear discomfort. The straightening of my nasal septum would enable airflow through both nostrils which, at the very least, I hoped would help me sleep better. I also had a faint hope that it could result in a reduction in the feeling of pressure in my ears and head.

The outcome of the surgery wasn’t quite what I had hoped for. The operation had been a success in that my septum was now straight. However, although I was now able to breathe air ‘out’ of the left side, I was unable to inhale. Unfortunately, the nasal valve on the left side of my nose collapsed following the surgery. This meant that every time I tried to breathe air in, the weakened side of my left nostril caved into the nasal passage; blocking the airflow. If I wore a nasal dilator strip, which I opted for during the night, I was able to breathe through both nostrils. But, as soon as the strip was removed, my nasal valve collapsed again. And so, after my septoplasty, I was still unable to breathe naturally through my left nostril and for this reason, the operation also had no impact on my associated ear symptoms.

This year I was offered another procedure to help me breathe, and of course, I agreed to it. The surgery would involve reshaping my nose to correct my breathing problem. I still refused to give up hope for having the minimum comfort of being able to breathe properly. Moreover, I retained my guarded hope for some relief from the persistent ear pressure. 

I spent the weeks leading up to my surgery exploring how my new nose would feel. To simulate my anticipated, improved breathing function I would press my left index finger on a patch of skin next to the left side of my nose and pull the skin away from my nose gently; opening up my airways. The feeling of breathing through both nostrils was wonderful and the pressure around my nose was clearly reduced. I ignored the confused and sometimes disturbed looks passers-by would give me and I’d smile with delight at the thought of this extraordinarily oxygenated state could soon be my new ‘normal’.

I had the open rhinoplasty surgery six days ago and am recovering well. The operation experience was very similar to my septoplasty. I awoke from the anaesthesia with my nostrils full of packing. There was gauze taped under my nose to catch the blood that steadily drained for the next couple of days. The first two days were predictably the most difficult. I was in a significant amount of pain, and it was very uncomfortable trying to eat or drink anything with my nose blocked with dressings. When I returned to the hospital 2 days following the surgery, the specialist removed the nasal packing and I immediately felt a lot more comfortable and had some marvellous breaths of air through both nostrils. On leaving the hospital I felt quite lightheaded from all the air I was able to breathe.

Recovery will take time and patience. My nose is full of stitches and is very sore. My face is bruised and swollen and at present, I resemble an old bruised potato. My nose is currently congested due to swelling, and I am not allowed to blow it, so it feels like I have a very bad cold. But, I am hopeful for some more wonderful full breaths of fresh air. I am hopeful for better sleep. And, I am still holding on to my most cautious of hopes; for some reduction in the constant feeling of pressure.

…I also wonder what my new nose will look like.

And…The Results Are in

It was results day. I was sitting on a hard plastic chair in the health centre waiting-area, muddling through the Spanish sentences in my head that I wanted to make sure I remembered to say to the specialist. There was an echoey buzz of noise from the conversation of other patients and the rattle of metal trolleys; full of medical folders, being transported to the consultation rooms. I tried to focus on breathing deeply to calm myself. Waiting rooms, the act of waiting, speaking in Spanish about health topics, and the worry of not understanding or hearing the specialist, are all things that make me feel nervous. 

After a short time, I was greeted with a “hello” by a doctor who I immediately recognized from a previous appointment. I smiled and replied “hello”, instantly feeling much of the tension in my body melt away at the realization that we would be communicating in English.

She asked me how I was doing and I told her that I was OK, although I still felt dizzy every day. I explained how I believed that the dizziness was influenced by many things –  crowds of people, tiredness, loud noises, salty foods, changes in weather etc. She said that all these things can cause dizziness, though doctors are not always quite sure of the reasons. Next, she asked me whether I’d had any more vertigo attacks since the last time I had consulted with her, and I answered, telling her I hadn’t.

She then looked at the results of my vestibular tests. “This is good,” she said. She told me that the results showed that my ear was working well to keep me balanced.  I asked her if she meant my right (hearing) ear. She replied with regard to both my ears, saying that my balance system was working to a satisfactory degree. She explained that she was reading some numerical results and that the graphical representations of these results were not currently available – there had been a problem with the printer part of the test-machine when I had taken the test. She said she would need to see the graphs in order to have more understanding of how my vestibular system was functioning. She had a surprisingly positive tone to her voice; something I wasn’t accustomed to hearing in a consultation room.

She conjected that perhaps the diagnoses of endolymphatic hydrops or Meniere’s disease were incorrect, and suggested an alternative reason for my dizziness and unsteadiness being vestibular migraines. I paused for a moment to consider this. I had witnessed my mum experiencing symptoms of traditional migraines for most of her life; something which still continues to affect her almost daily. I wasn’t however, particularly informed about migraine due to inner ear disorders. During these few seconds of contemplation, the specialist had already started to question her new hypothesized diagnosis. She said that although the test results noted a good result, it was probably more likely that I have endolymphatic hydrops or the early stages of Meniere’s disease. She backed this theory up with the evidence that I have pressure in my ear and the fact that consuming salty food also makes me noticeably dizzier and exacerbates the feeling of ear pressure. I had become accustomed to this kind of fluctuation of opinion concerning my diagnosis. Inner ear vestibular disorders are difficult to diagnose, and I was aware that my symptoms could be associated with more than one condition. She said that regardless of the diagnosis, she was happy because the results were good and showed that my brain and ears were working together to keep me balanced.

She then asked me about my experience with vestibular rehabilitation. I told her that I hadn’t noticed a difference in my everyday life, as I still felt dizzy in many situations. She responded unexpectedly by telling me that I had made a lot of improvement during the sessions and that I had almost doubled my test scores, following the treatment. I was happy about this as I had worked hard, and I secretly congratulated myself on my efforts. It seemed that although I was managing my balance more successfully, this didn’t equate to feeling more stable. I was still regularly feeling off-balance and dizzy, yet this was part of my condition. The therapy couldn’t cure these factors, it could only help me manage them more effectively.

I would consult again with the specialist in a couple of months. She reminded me to go immediately to the emergency department of the hospital, should I have any issues, however small, regarding my ears. She also told me to make sure I get plenty of rest, continue to drink lots of water, and keep my salt intake to a minimum. She wrote down the phone number of her receptionists and told me that I could phone them and ask to see her if I ever had any issues with my ears.

I left feeling comforted by the quality of care I had received, and confident that I was doing the best I could to support myself with this condition, whatever it may be.

Follow the Yellow Brick Game

After waiting a few minutes while the results of my initial posturography test were recorded I was asked to play some more ‘games’. I assumed this was the beginning of the vestibular rehabilitation. I was hoping this therapy would help train my balance system to manage the feelings of dizziness I was experiencing everyday.

This time there were only three bricks on the screen, arranged in a V-shape. Again, one square at a time changed from red to yellow, and I had to make my stickman move into the square that was, at that moment, yellow. The movements were simpler than they had been in the test, and the position of the yellow square appeared predictably; moving around the V-shape in a clockwise sequence. The ‘game’ was repeated, this time with the yellow bricks appearing in an anticlockwise sequence. Next, the metal plate I was standing on was programmed to be more sensitive, and the ‘game’ was played again, this time with lots of swaying, trying to keep my balance whilst controlling my stickman.   Then, all these ‘games’ were repeated but with the bricks forming an inverted V shape (like the capital Greek letter Lambda). When the plate was moving with increased sensitivity, I felt a little sick, and my stickman soared clumsily across the screen; dipping in and out of the target brick, like a staggering drunk trying to walk along a straight line.

I was asked to exit the booth and the nurse took the harness off me. My legs felt weak and wobbly and she held my shoulders to support me.  I put on my boots and was told to sit back in a chair so that I was comfortable. The nurse turned off the lights and the room relaxed into darkness; apart from a slither of natural light peeking from behind the window blind.

Across the room, opposite where I was sitting, was a thin tube about a meter long, and supported in a vertical position by a clamp.  Inside was a small red LED light which moved slowly up and down the length of the tube. I was instructed to follow the movement of the light with my eyes. I’m not sure how long I watched the light; the passing of time became difficult to judge whilst concentrating. It was perhaps only a few minutes, and my eyes started to merge the image of the red light together with its black surroundings, losing visual focus. Next, the light clamp was loosened and the tube was rotated into a horizontal position. I watched again, this time, as the red light moved from side to side.

Next, the nurse turned on what looked like a children’s bedside lamp. It was a black, short cylinder-shape. The face of the cylinder that went all around the lamp was decorated with a rubrics cube-type design. Small square lights of red, yellow, blue and green were arranged in two rows of repeated patterns. When the lamp was switched on it started to revolve slowly and I was asked to look at each green square light. My eyes focused up and down as the lamp turned, following the positions of the green squares. Then I focused on the other colours one by one; observing around 12 repetitions of each colour.

Finally, I was shown some exercises which I would need to carry out twice daily. I stood, with a chair in front of me as support, and looked at myself in the mirror opposite. The nurse stood behind me so I could copy her actions, from watching her reflection, as she demonstrated the exercises. The exercises focused on moving my head in different directions first with my eyes open and later with my eyes closed.

For two weeks I completed a half-hour session every day; harnessed into the booth, followed by a 15-minute calm-down period watching the lights. I started to learn more about the ‘game’ and the rehabilitation process. I realized there were different difficulty levels for the yellow brick ‘games’. The metal base, on which I stood, could be programmed to be different levels of sensitivity so that a higher sensitivity setting meant that a small shift of weight could make the cabin move quickly. Sometimes I would start on 40% difficulty and work my way to 70% during a session. Sometimes the red bricks were further apart, and there were varying amounts of bricks. Some of the ‘games’ involved my stickman moving back and forth between just 2 bricks, and other times there would be 8 bricks, all separated. Each brick remained yellow for 10 seconds and each level lasted for 5 minutes. After two weeks of intensive therapy I was assessed again; completing a test similar to the initial platform posturography.

I would return in a couple of weeks for one final session, followed by a consultation with a specialist to discuss the progress I had made and also to talk about the results of my vestibular tests.

Human Pong

I arrived at the health centre on a Monday morning to begin a two-week course of vestibular rehabilitation. I wasn’t really sure what to expect and hadn’t done any research about the procedure online, before turning up to my appointment. I was feeling optimistic, as I had read stories about others who had benefitted from this type of therapy. Before starting the therapy, I would be doing a Computerized Dynamic Platform Posturography test. This test can be used to assess and evaluate the relationship between the three parts of the balance system; the inner ear, vision, and the sensors in the muscles and joints.

A nurse greeted me, and I followed her into a small room. She asked me to remove my boots and then inquired about my name, age, height, and whether I had been in the health centre previously.

Next, I was asked to stand up and the nurse began to attach a safety harness to me. I put my arms through the main part of the harness, like a waistcoat. She fastened it at the front and then secured another part between my legs; pulling the loose end of the strap tightly. I was then asked to walk into an open-backed grey booth. The nurse clipped thick metal clasps – similar to the kind rock climbers’ use – through the two loops of the harness, close to each of my shoulders; connecting them to two straps that were hanging from a horizontal pole at the top of the booth. She then helped me to position my feet, slightly apart, on the metal plate at the base of the booth. I stood, wearing only socks on my feet, my body strapped into place inside the booth; quickly realising the coldness of the metal plate, and feeling slightly vulnerable, yet also intrigued as to what was going to happen next.

I was facing the inside wall of the booth, and in front of my eyes was a blank screen, slightly smaller than an A4 piece of paper. My first task was to focus on the screen with my eyes open, keeping my balance. I assumed a computer was recording any shift in my body weight as I endeavoured to remain steady. Next, I had to close my eyes. I could feel my body sway as I went into darkness. I then had to open my eyes again, and within a moment I felt my surroundings move. The metal platform and the booth walls moved slightly and I was asked to maintain my balance. I was aware that the nurse was standing behind me during the entire procedure, and in addition to the harness that was fastened securely, I knew her hands were ready to support me if I fell. I then had to close my eyes again whilst the plate or the booth, or maybe both (I wasn’t sure) was moving. It was difficult to keep my balance and I stumbled slightly. Finally, I was asked to open my eyes again whilst the plate was moving. On opening my eyes I felt a wave of dizziness, but nothing too severe.

Next, the screen in front of me was switched on and a stickman, enclosed in a line square, appeared on a blue background. The nurse explained that I was the stick man; when I moved, so did the little man on the screen! The movement seemed to be controlled by my leaning and the pressure my feet were applying to the metal plate. There were numerous ‘jeugos’ – she described the tests as ‘games’. The concepts were simple, and the first ‘game’ resembled something very similar to a human version of the old Atari computer game, Pong. A circle – I imagined this as the ‘ball’ – moved predictably across the screen, back and forth between two vertical lines – the ‘players’. The aim of the ‘game’ was for me to follow the movement of the ‘ball’ with my stickman body. The ‘players’ unlike in the original Pong were stationary. I swayed from side to side on the metal platform, trying to keep on course with the ‘ball’. This was more difficult than I’d anticipated, and my stickman body flew around erratically for a few shots before I was able to control my movements and balance well enough to roughly follow the ‘gameplay’. Just as I thought I was getting the hang of it, the speed of the ‘ball’ increased so that it was being ‘hit’ between ‘players’ at a much faster pace. Again my stickman body was flinging itself all over the place, and I found it difficult to keep up with the ‘ball’. This Pong-like ‘game’ was repeated so that the ‘players’ changed positions and were represented as horizontal lines at the top and bottom of the screen with the ‘ball’ and me moving upwards and downwards with each shot. The final Pong ‘game’ was played whilst the platform made some movements which of course made it more challenging.

Pong

The final ‘game’ comprised of basic red and yellow-coloured squares that looked like representations of bricks. Eight squares were arranged in the centre of the screen, together forming a rough oval shape. All the squares started off as red, apart from one that was yellow. This square would remain yellow for 10 seconds before changing back to being red. The consecutive square in the oval shape would then turn yellow for 10 seconds before changing back to being red, and so on. The aim of this ‘game’ was to move around the oval shape, with my stickman body, to each consecutive yellow square. When the ‘game’ began, an off-balanced wobble of my legs caused the stickman to be launched again wildly across the screen, before I managed to take more control. The movement of the metal platform beneath my feet caused the sensation of being on a boat that was very sensitive to movement. The more I swayed towards the yellow squares, the more the surrounding booth moved, making me feel unbalanced; causing unsteady movements of my stickman. I played the ‘game’ to the best of my ability, though it was difficult to maintain position inside the squares, and my stickman swayed around the perimeters; dipping in and out of them. With some time, however, my confidence and ability increased and I started to feel competitive. The ‘game’ was repeated, with the yellow square moving around the oval shape in the opposite direction, and again with more sensitivity and movement from the foot-plate.

vestibualr rehabilitation screen

 

Once the ‘games’ were completed, the nurse printed some results. I saw some sets of bar graphs and values on the screen in front of me, but they weren’t discussed. I was told to stand still and wait a moment. I supposed these results would inform the doctor as to how well my balance system was functioning, enabling them to tailor the therapy to my needs.

Hearing Me – A Documentary for the BBC World Service – Now Available to Listen to!

BBC World Service

It’s been two and a half years since I suddenly lost the hearing in my left ear, and today I am celebrating all I’ve achieved since my hearing loss.  Thanks to the BBC World Service, I am very happy to share this glimpse into my life without full sound.

Hearing Me is now live to listen to! Please note, a transcript is also available through the same link – just scroll down the page to download:

https://www.bbc.co.uk/programmes/w3csynqv

Another big thank you to Chelsea Dickenson (Audio Always) who spent 4 days following me around Madrid with a microphone, and who showed me just how much energy and attention goes into making a radio documentary.

Please take a few minutes to listen and share. Thank you 🙂

Hearing Me – A Documentary for the BBC World Service

BBC World Service

Something exciting happened last month!

I was involved in making a radio documentary for the BBC World Service, which describes some of my experiences of living with hearing loss and tinnitus, and also reminds us not to take our hearing for granted.

I feel so lucky to have had the opportunity to take part in this, and to be able to share my story.

Hearing Me, is now up on the BBC World Service’s schedule: https://www.bbc.co.uk/programmes/w3csynqv

The documentary will be played several times so that people in different time zones can listen to it. You can find these by clicking ‘more’ below the programme information.

Afterwards, it will be available online through the same link as above, and it will also be part of their ‘The Documentary’ podcast series: https://www.bbc.co.uk/programmes/p02nq0lx/episodes/downloads

Please note there will a transcript to enable listeners to follow the dialogue.

A huge thank you to Chelsea Dickenson and Audio Always for creating such a personal and creative piece, I absolutely love it, and hope my readers/listeners (!) all do too!