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.

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!

Small Talk with a Stylist

During the summer, while spending some time in England, I had a really great experience at a hair salon. Although I was very happy with my new style, this wasn’t the reason for the experience being great. It was great because I had a conversation with my stylist. This maybe doesn’t sound like anything noteworthy, but for someone with a hearing loss, to be able to converse in a hair salon is actually something pretty fantastic.

There is so much background noise in a hair salon. There are the hairdryers, and the music that is often played loudly to be heard over the sound of the dryers. There must be the noise of water running out of the taps from the sinks where people have their hair washed, but this gets lost amongst the other sounds. There is the noise of people talking in raised voices attempting to converse; in a battle of audio strength with the other sounds of the salon. There are generally no or few soft furnishings in hair salons – I guess it wouldn’t be very practical to have thick curtains and carpets, due to all the stray hair. With an absence of soft furnishings, there is nothing to absorb the sound, and so it spends it’s time bumping into the mirrors, bouncing off the windows and porcelain sinks; continuously combining with the additional noises being produced every second.

It almost seems like it is part of a hairdresser’s job to make small talk with their customers. A hairdresser may get to know their client’s holiday plans; where they work; where they live; if they are in a relationship and if so for how long; and whether they have kids. The salon chair is often akin to the therapists couch; inspiring people to speak about their personal lives. Since my hearing loss, I have struggled with the whole hair-cutting experience due to the amount of noise in hair salons and the conversation difficulties. I was feeling a little nervous before going to this appointment. I had waited until I was in England visiting my sister to get my hair cut; at least this way I wouldn’t have to worry about trying to speak Spanish as well as not being able to hear properly. The appointment was at my regular hair salon, though I hadn’t met the stylist before. As usual the stylist and I had a quick conversation about the type of cut I would like, and then just before the stylist left to ask a colleague to wash my hair, I quickly added (whilst cupping my left ear with my left hand), “Oh, by the way, I’m deaf in this ear.” Lauren, the stylist smiled and assured me that this was fine.

After having my hair washed, I was back again sitting in the chair facing my reflection in the mirror. During the couple of weeks prior to this appointment, I had been trying to develop my lip-reading skills naturally by watching lips during conversations, and had had some success in doing this, especially in bars and restaurants. I was keen to continue practising my new superpower-in-progress.

Even the best lip-readers are only able to understand around 30% of what is actually said by solely relying on lip-reading; the rest is educated guesswork, gathered from context.  In fact ventriloquists are able to produce a voice with little or no movement of the lips, since most sounds are produced inside the mouth where you can’t see them. And so, there is a limit to how accurate even the most skilled of lip-readers could ever be, because most sounds aren’t produced with the lips. Nevertheless, watching a speaker’s lip movements, facial expressions and gestures during a conversation can be very beneficial in aiding verbal communication.

I watched Lauren’s lips in the mirror as she spoke, and in using the shapes her lips were making along with the sounds and words I could hear, I was able to follow most of what she was saying. After telling me about her work schedule for the week, she asked me what I did for work. I told her that I teach in Madrid. She told me she had never been there, though she had once been to Barcelona and that she had loved it. She commented on her holiday saying, “You know Pans, Pans and Co’?” (This is a sandwich franchise in Spain) “Why don’t they have them here? It’s like, they have Subway here, but Pans and Co is way better. The bread is amazing! Oh, I just want a Pans!” I smiled at this remark, and the conversation continued in a light-hearted dance of words.

I briefly noted that whilst watching the movement of Lauren’s lips in the mirror, it at least meant that I wasn’t spending the time awkwardly looking at my reflection. She must have noticed my stare, and asked me, “So do you lip-read then?” My secret was out. She wanted to talk about it. Great – I was happy to discuss my new project. I told her that I was trying to learn how to read lips. Lauren then asked whether I had always been deaf in my left ear. She seemed really interested – not just the general hairdresser level of interest – she actually seemed curious about my hearing loss. I told her my story in brief. She then surprised me by telling me her story. She recounted how she had caught glandular fever multiple times when she was a child, and this had resulted in her losing the hearing in one of her ears. She told me that she had found it really difficult especially since the doctors weren’t able to tell her whether her hearing would return. Luckily it did return within 3 months. She explained how during her time with hearing loss, she used to have the sensation of being underwater; the sound and pressure of water filling and whooshing past her ears. I told her that I also have this feeling.  I described how I always think sounds are coming from my right side, and she finished my sentence by saying, “Because that’s the ear you are hearing everything through.” The conversation moved to some more general discussion about hair thickness after that. But for that brief moment, it had felt so great to have shared a few words with someone who had an understanding of my hearing loss.

After this small exchange of experiences, Lauren switched off the hairdryer every time she wanted to tell me something of importance. She also spent most of the time with her body turned so that I could look at her face-on in the mirror, and follow her lips and her words. I felt such a sense of accomplishment to have been able to understand so much more of the conversation than I had on previous trips to the hair salon, following my hearing loss. Of course I didn’t understand everything that was said, but I doubt many people do. I left the salon with a new hairstyle and some newly found confidence in my developing superpower.

“You really need to learn how to lip read.”

I walked into a busy classroom and the teacher motioned for me to go over to where they were sitting. As I approached, they proceeded to whisper a remark about a child in their class. The whispering took place behind their hand. When they realised I hadn’t heard them, they removed their hand from their face and repeated the whispered remark; making over-pronounced shapes with their lips. The classroom was noisy, and I had no idea of context to help me in decoding what my colleague had said to me. They began to chuckle. I feigned an amused-sounding laugh; assuming this was an offhand statement which required no verbal response, and that a laugh in concurrence would suffice. Yet my reaction failed in convincing the teacher of my comprehension. The comment which followed was not about a child, but instead was directed at me. My colleague was obviously irritated at my inability to hear them, and the comment was made in response to this annoyance. It was conveyed with intense clarity. Each word was enunciated in a loud voice: “You really need to learn how to lip read.” I heard it perfectly. I left the room without a verbal response.

A couple of days later, again I went in to the same classroom and again my colleague signalled for me to go over to where they were sitting. They proceeded again to whisper a remark about a child in their class. I didn’t hear them, and again the same words were spoken: “You really need to learn how to lip read.” This time however, the comment was made twice. Both times I was unresponsive. Although I hadn’t heard them clearly the first time, I knew what had been said, though I wasn’t able to voice a response. I stared, aghast, at my colleague as they reiterated themselves, looking at me with a mixed expression of irritation shifting towards smugness; smirking at their own wit. How could they think this was appropriate, even funny?

I am accustomed to letting go of frustrating moments. I can shrug off aggravated looks from strangers when I fail to move out of their way in the supermarket, or when I don’t respond to them when they address me on my deaf side. I have learnt not to concern myself with raised annoyed voices, and irritated repetition of words. I even try to find retrospective humour in times of mishearing. I was surprised at my reaction to my colleague’s comment. My usual response of smiling to create a barrier; in protecting myself from such remarks was, for that moment, deactivated. My openness in talking about my hearing loss and explaining how it can make communication difficult, especially in noisy environments, was momentarily paused. After receiving the comment I felt vulnerable, weak, confidence drained. This colleague was someone who had asked me questions about my hearing loss and had shown interest in learning about my tinnitus. I thought they had some understanding. I failed to form a verbal response because I was in shock. I was upset. I was disappointed.

I have since had time to contemplate the interaction and have structured a response for any similar situation in the future. I should have said to my colleague that while I’m sure it wasn’t their intention, that their comment hurt me. I should have told them that I understand it can be frustrating for people to have to repeat themselves, and that this frustration may be elevated when they are busy. I would like my colleague to know that I am beginning to find myself watching lips during conversation, in situations where there is a lot of background noise, or when someone has a strong accent. I am using the shapes and movements of lips to help me translate the jumbled sounds into some meaning. I should have also told them that they had a valid point – although it could have been conveyed with some compassion or during a confidential moment. I should learn how to lip read. Not because my colleague thinks so, but because it seems like the natural next step for me in developing my communication skills.

In future I would like to give some information to my colleagues about lip reading. I would like to suggest ways of helping someone who is trying to read lips. Just because someone has experienced a hearing loss it doesn’t mean, by some kind of transferred skill, that they are instantly able to lip read with ease. These skills take time, practise and patience. I would like to explain that background noise and lack of context can make lip reading extremely difficult. That reading someone’s lips whilst they are speaking behind their hand is impossible, and that over-pronounced lip shapes are not helpful for the reader.

This experience has drawn my attention to the lack of understanding my colleagues may still have of my situation. Despite having explained some of the communication difficulties I face, I know it is easy for people to forget. I don’t look any different to how I did before my hearing loss. I am thankful for the people who ask questions, who listen, and who try to have some comprehension of my condition. Yet some people may not feel comfortable to ask questions. If I don’t explain how this type of comment can make me feel, then how are people going to know what an upsetting impact such a comment may have? Next time I will explain. Now I feel ready to respond to any similar remarks in a strong and positive manner, as the hearing loss advocate I am learning to become.

Stranger Things: My Septoplasty Story – Part 3

At 8am the night-shift nurses said their goodbyes to me, and new staff started to enter the room.  An hour or so later I was given some antibacterial hand gel to clean my hands, and was presented with a yogurt, a clear jelly, a pack of plain biscuits, and some thick sweet fruit juice. I devoured it all. I paid only momentary notice to the difficulty I was having in swallowing food and eating, whilst only being able to breathe through my mouth. A doctor then promptly came to give me my medical notes and said I could go home. My boyfriend arrived and a nurse changed the bandage on my nose. This time the bandage was wrapped around, leaving a small opening, showing a glimpse of the tip of my nose. My boyfriend later commented that it looked like a beak and that I should paint it yellow. Soon I was sitting up in a chair, back in the first recovery room in which I’d been the night before, just before my operation. We were given my medical notes, a Ziploc bag with painkillers and antibiotics, and an appointment for the next day for me to have the packing removed from my nostrils.

The rest of the day I spent in exhausted fogginess. I lay on the sofa and dozed intermittently; happy to be home. My boyfriend bought groceries, made soup, and washed my hair; which made me feel a little better. My nose was extremely uncomfortable. It felt like the worst congestion I could imagine; like having a terrible cold, but not being able to blow your nose. As the day turned into evening I became increasingly uncomfortable. The congestion seemed to be spreading to my throat, and breathing was becoming more of an effort. My bandage was quickly turning red. I frequently had to clear my throat of bloody mucus, which was unceasingly replenishing in supply. By the end of the evening, whenever I attempted to swallow; little pink bubbles of mucus foamed in the small opening in my beak.

That night I slept. It wasn’t a restful sleep, more of an exhausted crash. I kept waking myself up with the loudest of snores; a consequence of my mouth breathing. On waking each time I realised my discomfort, and I made numerous trips to the bathroom to spit out more mucus. Then around 5am I woke in a panic, almost unable to breathe. I went to the bathroom with the feeling of something stuck in my throat. Whilst looking at my reflection in the mirror through tired eyes, I forced the muscles in my throat to contract and relax in order to remove the obstruction. Then it slowly appeared. I gently pulled on the offender; some gooey, mucus soaked gauze. It was like something from a horror film. I was just happy that the rest of the packing from my nose didn’t follow.

The next morning I had my appointment at the hospital. I walked into the consultation room, and was happy to see the initial doctor I had spoken with, when I had first lost my hearing. Today she spoke to me in Spanish.  She examined my throat for gauze, and then with a thin metal hook, she removed the packing from my nose. I had an immediate sense of relief. Oh my goodness, I was so much more comfortable. The specialist asked me to try to breathe through my nose. I had a few wonderful moments of clear airways. I was breathing through both nostrils! I felt a little lightheaded. Then rapidly the airways started to clog. The doctor carried out the usual nasal examinations; inserting the thin rigid tube with the light on the end, and then using the metal pliers-type tool to lift up the end of my nose and view my nostrils. She cleaned out my nose using a spray that stung slightly, and told me that the operation had gone well.

When I arrived home that day, I realized I could smell the soup from the night before. It hadn’t even occurred to me that I couldn’t smell anything the previous day. My nose freely dripped with blood all day. I resembled the character Eleven, from the television series Stranger Things, though I was unknowing of what magic I was performing during my nosebleeds.

It has now been 9 days since my septoplasty operation. I still have numbness in my top front teeth and on a small patch of my palate. The headache, stuffiness and pain from the congestion is lessening every day. My nose is still sore, and I am still very tired. A couple of days ago I discovered stitches on the left side of my septum, which I assume will dissolve or fall out over time. Every day I have to perform nasal irrigation to clean out my nose. This entails using a specially designed plastic bottle with a thin applicator spout with a plug on the end, which fits into the nose. I fill the bottle with water and add a salt solution, and then squeeze the bottle; allowing the water to travel through one nostril and then come out through the other. My right nostril is now clear. Although I am not yet able to breathe air in through my left nostril, due to the swelling and stitches, I have been able to breathe air out of this side of my nose; which I wasn’t previously able to do. This is already a positive result.

My next appointment at the hospital is in a couple of weeks, and I am in excited anticipation for the day when I am able to breathe with ease.