Living with Single-Sided Deafness

I lost the hearing in my left ear through sudden hearing loss in August 2016. There wasn’t a known cause for my hearing loss, I wasn’t feeling ill and I didn’t have an infection. One day the world to the left of me just fell into silence. The hearing loss was profound which means I have no functional hearing in my left ear, and for just over two and a half years I have been living my life with single-sided deafness (SSD).

People with SSD are able to hear through their ‘good’ ear, yet have a profound hearing loss in their other. I am thankful that I am able to hear with my right ear, yet living with SSD comes with its challenges.

Sound localisation is a skill enabled by having two working ears, and so with only one hearing ear, I have no idea where sound is coming from. I might hear some music or a noise, but I don’t know which way to look to see what has produced the sound. Trying to find a mobile phone that is ringing results in me wandering hopelessly around my apartment with my ‘good’ ear leading the way and looking to see if I can spot it, usually ending up back where I started and realising the phone had been next to me all along. Locating a music source is also a challenge. There was one occasion where I was walking in the centre of Madrid, where I live, and I could hear a busker playing the guitar and singing a Bob Marley song. Whilst gazing around to see if I could find the owner of the interesting staccato-type singing I stopped in my tracks with a jump as I almost fell over the person responsible; who was positioned in my path, undetected by my gazing view and lack of directional hearing.

Thinking that all sounds are coming from my right has resulted in some scary instances when crossing roads when I haven’t realised traffic is approaching from my deaf side. It has also resulted in some, in hindsight, comical moments. One day, I was sitting on a seat at the end of a row of seats, on the metro train. I thought that I could hear someone playing the accordion somewhere far down to the right of the train. I was feeling relaxed, and as I tried to focus on the tune that was being played, I saw the woman opposite looking at something next to me. I turned to my left, to where she was looking, only for me to jump up in my seat as I let out a little yelp; startled to see the accordion player was actually standing right next to me, on my deaf side.

My boyfriend automatically walks on my right-hand ‘good’ side where he knows I will hear him. This prevents me from having to continuously turn to face him with my ‘good’ ear, in attempts to catch some snippets of conversation. With friends, who often forget which is my hearing side, or for those who don’t consider it, I place myself on their left. When they inadvertently change sides whilst crossing a road or when they stop to look at something in a shop window, I find myself dancing around them; trying to position myself as quickly as possible back on their left side.

When I’m on my own in everyday places and situations I sometimes feel vulnerable. I worry about crossing the road, and not knowing which direction to move out of the way when I hear the siren of an emergency vehicle. I worry about strangers talking to me, and not being able to hear them, or even worse failing to acknowledge them; if they have addressed me on my deaf side. I unwittingly ignore people to the left of me and often notice a frown on a stranger’s face, presumably because I have failed to respond to them or to move out of their way. I find myself constantly scanning my surroundings; checking people’s faces to see if they show any sign or clue that they are speaking to me.

With single-sided deafness, I find it difficult to hear when there are other noises present. Our brains are responsible for selective listening, which is more challenging without the help of a second ear. In a noisy environment, it is difficult to focus on a single person’s voice. Socialising can be demanding amongst background noise. In restaurants and bars I have learnt to sit in a corner, or with my deaf ear against a wall and my hearing ear facing the person I am speaking to, in order to have some chance at hearing them in conversation. I have learnt that it is only possible to concentrate on listening to one person at a time.

With my single-sided deafness has come tiredness, frustration, loneliness within groups of friends in conversation, and super-sensitivity and hyper-reactivity; meaning I am startled easily by unpredictable or sudden noises. I also have difficulty multitasking and find it hard to perform another task while listening.

Yet, I have found that being able to see some humour and positives, however small, in some of the situations I find myself in, can help me stay positive. For instance, with single-sided deafness, I can block out sound during the night or when having a nap, just by putting my ‘good’ ear to the pillow. I only need to use one earphone when listening to music, and if there is someone I don’t want to listen to, I can make sure they are sitting on my deaf side.

If you or someone you know is also living with SSD, I’d love to hear from you. Please feel free to leave a comment and share some of your experiences.

 

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

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.

New Year Tests

It was the first week in January and I was beginning the New Year with a visit to the hospital. Since my vertigo attack, and experiencing increased dizziness during the past few months, I had been referred to a Vestibular Audiologist to carry out some tests. The vestibular system is the inner ear balance mechanism, which works with our eyes and parts of our brain to stop objects blurring when the head moves. I was at the hospital to carry out some Vestibular Function Tests (VFTs) to determine the health of my inner ear balance system; in particular that of my right and only hearing ear. In preparation for the tests I was told to eat breakfast 3 hours beforehand; to not wear makeup or face cream; and to refrain from consuming caffeine or alcohol for the 48 hours leading up to the tests.

The first test was called a Video Head Impulse Test (vHIT). A friendly looking woman asked me to sit on a chair facing a wall. On the wall was a silver sticker that was the shape of a paint splodge. She fixed some goggles over my eyes, fiddling with an elasticated strap to make sure they were secured tightly; the plastic pressing into the skin around my eye sockets. She forced my right eye wide-open and trapped it in position with the goggles. She then sat to the left of me at a small desk with a computer. I began to realise that the goggles were making a high pitched noise that I could hear in my right ear. I wondered if they were making the same sound next to my deaf ear; undetected. I figured the glasses had a camera embedded inside them, and that the data would be sent to the computer and then interpreted through some software. I couldn’t look at the screen or what the woman was doing, as she told me to focus my vision on the paint splodge. I sat there for a while whilst I heard her gently tapping the computer keys.

After about 10 minutes she stood up and said something to me in Spanish that I didn’t quite hear nor understand. She held my head in her hands, and started to move it with small sudden motions. During this procedure I had to continue keep my focus on the splodge. She carried out this process in 4 short sessions, each one lasting approximately 5 minutes. My hair kept escaping from her grasp and individual strands fell randomly to my face. She kept moving them away and commented on how fine my hair was. After the third session her phone rang and she had a chat with someone who I gathered, from a few moments of concentrating on her Spanish conversation, were family. It was still Christmastime and the feeling in the hospital was more relaxed than usual. Whilst she was speaking I took the opportunity to look at the computer screen. There was a close-up photo of one of my eyes, and two graphs that were being plotted with what I assume were the reactions of my eyes to each movement. One graph was plotted in a red curve, and the other in blue. I could see, at this moment, that my left side had received a ‘positive’ result and my right side a ‘negative’. I wasn’t sure what this meant, and the test wasn’t over yet. Once the test was finished I felt a little dizzy.

Next was the Caloric Stimulation procedure. I was asked to sit in a chair, similar to one you’d find in a dental clinic. The chair was reclined so that I was lying down and comfortable. Then she fixed another pair of goggles over my eyes. These were bigger than the previous, and pressed forcefully onto the bridge of my nose. The woman explained that the googles had cameras inside to film my eye movements. She then put covers over the lenses so that I lay in darkness. Next she gently tucked what I assume was a towel, under my chin and around my shoulders. Then, what felt like a small bowl, was placed under my right ear. She informed me that she was going to put some water into my ear and that it was going to sound very loud. She instructed me to keep my eyes open once the water supply stopped. She was going to start by using cold water and would test my right (hearing) ear first. Well, I wasn’t really prepared for what happened next.

I had imagined that a small amount of water would be squirted into my ear; perhaps a syringe-full. First, I heard a mechanical-sounding Spanish voice, coming from a machine – I think it was stating the measurement of water or pressure that had been selected for the test. Then my ear was filled with a high-powered continuous stream of water. It sounded like a storm inside my head. The sensation of the water going in felt cold and as though I was having an intense ear-clean, though it wasn’t too uncomfortable. Once the water stopped flowing, I felt it start to drain out of my ear; trickling into the bowl. I forced my eyes wide open as I had been instructed, and then the dizziness began. The woman had left my side, and I assumed she was now at her computer checking the results. It felt like a mild attack of vertigo. I watched the blackness of the inside of the goggles swirl from one side to the other, and started to feel a little sick. I was aware that the woman was saying something to me, but with some water still in my ear, I was unable to hear her. When all the water had drained, I heard a small satisfying pop and I could hear again. I told her I felt a little sick and dizzy. Once she had the results she needed, she let me rest for a while with my eyes closed. Next she performed the same routine on my deaf ear. This time the sound of the water entering my ears was silenced; a muffled gurgle. The dizziness following the water spray was slightly more intense, and again I was allowed to rest with my eyes closed, following the taking of results.

I hoped the test was over, but she informed me that she would now repeat the procedure on both ears; this time with hot water. The hot water was a little more uncomfortable than the cold had been, as it entered my ear. As soon as the water began to trickle out, an intense wave of dizziness overtook me. I tried to control my breathing. I started to sweat. I told her I felt really sick. I managed to control the dizziness and the nausea, and was allowed to rest a little longer with my eyes closed. I was also instructed to keep my eyes closed as she performed the hot water test in my left (deaf) ear, but to open my eyes wide again once the water stopped. There was some discomfort as it streamed into my ear, accompanied by the subdued sound. I opened my eyes widely once the water pressure had stopped, and I was immediately hit by a surge of strong vertigo. I wanted to close my eyes. I wanted to sit up. I was told to keep my eyes open for a few more seconds whilst the results were being taken. I was sweating more. I became aware of my heart beating wildly in my chest. I focused on controlling my breath; breathing out deeply with my lips puckered tightly into a circle. I held onto the side of the chair to try and keep myself stable.

She rushed over to me and carefully brought the chair back up into a sitting position, and placed what looked like an adult nappy across my forearms and under my chin. She told me to breathe and relax. My stomach cramped as though I was going to vomit, and my head jerked forward. Nothing. I realised why it had been necessary to fast during the three hours before the test. My arms and fingers were tingly and weak; the feeling I used to get as a child from carsickness. I breathed in controlled breaths for some time, as the woman continued to do things at her computer. I started to feel better.

A familiar face appeared in the doorway – it was the specialist who I had consulted with when I first lost my hearing. She recognised me and asked me if I was OK, and she wished me a Happy New Year. The woman made me wait a little while longer after feeling better and then she gave me a sealed envelope, addressed to the ENT department, containing the test results. I would take these with me to my next consultation to discuss with a specialist.  I was then allowed to leave the room and go to my boyfriend who was waiting for me outside.

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.

Dizzy Dollies

When I was a child, I used to play a game with my sister, called Dizzy Dollies. I don’t know if this was an actual game, or just something my mum thought up as a way of keeping us occupied. The game involved spinning around, usually on grass, with arms outstretched like birds. We’d spin; our arms feeling light from the rotational force, until the dizziness became too much for our brains and bodies to compete with, and we’d fall down with a joyful thud of giggles.

Since my hearing loss, that feeling of dizziness a few moments before falling is always with me; following me around like an unwanted shadow. I now have a sense of dizzy instability, much stronger and more frequent than before my recent vertigo attack. When I’m walking around my apartment, I feel OK. My brain is accustomed to navigating my body around the small enclosed space. However, when I go outside, my stabilisers are removed and my vulnerability is exposed to the vastness of my surroundings. The movement of people on the streets and the cars on the busy roads cause a rapid development of confusion in my balance, and in turn my ability to steer my body with composure is put to the test. When I’m in a crowd, or if I turn around and see someone standing close to me, I immediately feel off balance and the Dizzy Dolly feeling hits again. Every three or four steps I feel a heaviness building inside my head combining with the ever-present pressure in my ears. This weight causes a sensation of my head being forced downwards; a feeling that quickly spreads through my body. My legs become heavy, and the floor seems to lurch towards me. I am constantly trying to find my balance. Sometimes I feel nauseated. Other times I need to sit down to regain my balance. I feel dizzy if I look around too much or too quickly. Certain types of lighting also seem to affect my steadiness, especially in supermarkets or department stores. I’ve noticed some difficulty focusing my eyes now. Sometimes when I try to concentrate my sight on a small area, my focus drifts away and I have to keep forcing it back. I don’t feel comfortable walking close to people with walking sticks, pushchairs, prams, and small dogs, in the worry that I will lose my balance and fall on them.

For the past month the only advice I have been given is to rest. And I have rested. Yet, if anything, the feeling of dizziness when I am outside seems to be worse than ever. It occurred to me that maybe resting could now hindering my progress.

Whilst searching on the internet for practical advice, I came across a blog entitled ‘Life with Sudden Sensorineural Hearing Loss’. It was written by a girl named Dana, who had experienced sudden hearing loss in the summer of 2007. In her post ‘Be Active’ Dana describes her return to college after losing the hearing in her left ear. She writes about the challenge of her ‘roller coaster’ bus commute, and the instability she felt when riding the escalator:

‘I made my way to the escalator, gripped the railing firmly, and focus my eyes on my feet to prevent losing my orientation on the long descent to the metro platformThe movement, the echoy noises in the metro, and a constant sense of chaos.’

These experiences were incredibly similar to mine. I felt some comfort in knowing that someone else had also undergone these challenges when traveling on public transport, following a hearing loss. Dana explains how her daily commute became easier during the successive months. Then over Christmas she worked from home, and didn’t have to worry about her hearing and balance. When she returned to her classes in the New Year, she comments again on her commute:

 ‘The bus ride to the metro was just as terrifying as it has been my first week in September. All progress that I’d made on my balance was lost.’

Dana consulted with an audiologist who carried out extensive tests of her hearing, eyes and balance. She also listened to Dana’s story about how her balance had improved during the autumn, and after asking follow-up questions the audiologist gave her a simple instruction:

“You’re healthy but your balance is off. From here on out you need to retrain your brain constantly where your new balance is. And to do that, you must simply stay active. That’s your prescription – to stay active.”

Dana summarizes that ‘During my several sedentary weeks in December, my brain had completely forgotten all of the lessons I had taught it.’   

Maybe this is what has happened to me. I have been told to rest, and resting has enabled me to feel stable in the small surroundings of my apartment. But by resting every day, and spending a lot of time indoors, my brain hasn’t needed to work to constantly recalibrate my balance. Perhaps I need to retrain my brain to manage my stability in more challenging situations. Maybe I need to become accustomed to being outside again; to feel more confident traveling on the Metro, riding escalators, and walking on busy streets. Maybe the best thing I can do to help shake this Dizzy Dolly feeling is to ‘stay active’.

In the lack of any better suggestions, this is the prescription I am choosing to fill. I have had enough of resting. I am an active person. I enjoy walking and running, and being outside. I have rested enough. This condition is unpredictable, and I can’t spend my days waiting to feel better. I certainly don’t want to be always waiting for the next vertigo attack. I need to focus on continuing with my life as best as possible. I will endeavour to ‘stay active’ and attempt to lose this unwelcome shadow of dizziness.

“I know a song that’ll get on your nerves, get on your nerves, get on your nerves…”

Have you ever had a song stuck in your head? – An unwanted earworm that keeps playing over and over? A catchy piece of music that continually repeats through your mind, long after it has finished playing? This is similar to how I would describe my tinnitus. But instead of the notion of the song, there is actual ‘noise’, and the music never stops playing. There is no end to the record.

Tinnitus is defined as the perception of noise or ringing in the ears or head. The noise is not from an external source, and can manifest itself in many forms. The varying sounds have been described as whistling, whirring, clicking, screeching, hissing, ringing, buzzing, pulsing, whooshing, or even musical. Tinnitus is a symptom of an underlying condition such as hearing loss, ear injury or circulation problems. From the moment I lost the hearing in my left ear, I simultaneously gained these unwanted sounds. My life became noisier.

My tinnitus feeds off salt and sugar, caffeine and alcohol, and feasts on a lack of sleep. Exposure to loud noise makes my tinnitus worse; giving it energy, enabling it to accelerate or become louder, and more prominent. Sometimes it is so loud that it is difficult to hear or concentrate on ‘real’ sounds. Sometimes it steals my attention from conversation. My tinnitus seems to be related to the pressure I feel in my ears and head. Louder or faster tinnitus means more pressure, sometimes culminating in a pain that feels like the inside of my ear is being stretched to full capacity; to the point of something bursting.

For some people their tinnitus comes and goes, and for others it is constant, chronic and persistent. Mine is ever-present. It will often fade into the background of my days; everyday noises will usually mask it, forcing it away from my attention. Yet, there is the cruelty of finding a peaceful moment, or going for a walk in the countryside, and realizing the tinnitus has no ‘real’ background noise to overcome. It bounds into the foreground, onto the stage for full attention.

At night-time there are no ‘real’ sounds to mask it. At night-time it loves the limelight; gobbling it up with glee. The more I focus on it, the more layers of noise I discover. The foundation layer is the sensation of being underwater. I am under the sea, swimming deeper and deeper; water whooshing past my ears. With more focus, electronic-sounding agonized moans begin to emerge. A violin enters the stage; playing a continuous high-pitched and out of tune note that wavers painfully up and down in tone. The sound of an old metal kettle materializes, boiling with the shrill continuous whistle; demanding to be taken off the heat. Occasionally there is a piercing spark of noise; like the sound you’d expect your finger to make if you were turning something magically to ice. Sometimes the moans sound like melancholy singing. A penetrating fog horn begins to sound. A burst of crackling radio static joins the chorus, as the knob of an analogue radio is turned; seeking out a resonating frequency and occasionally skipping past the notion of a word or a piece of music.  I make pictures with my mind. I form images around the sounds. The more I focus, the more elaborate the scenes become. Wailing prisoners bound and shackled, all in a row, somewhere in the distance. Someone is trying to scream, but is not able to make the desired sound, just a sharp continuous squeal. There is someone drying their hair in another room…

… When I stop feeding it my attention, it’s back to swimming underwater.

My tinnitus is like being in an argument I don’t want to be part of. I am engaged in a duel I didn’t sign up for. At times it can be a torture. I am always fighting. I stay busy. I take my mind off it. I surround myself with everyday sounds.

I find myself observing people on the street, on the Metro, in bars, restaurants and parks. I wonder whether they too have these unwanted noises. Are they too trying to ignore the record that won’t stop playing?

I choose to ignore my tinnitus with as little effort as possible. Since the more effort used, the more attention it receives, and then it starts to win the battle. It’s a paradox I must fight. I wish for the noises to stop. I dream of relishing a quiet moment, but I can’t remember silence.

Another consultation with another specialist – Part 1: Distractions

The first thing he said to me was that I would never get my hearing back. There was no greeting. In fact he didn’t even lift up his head to look at me, as he spoke these opening words.

I was in the hospital again for a consultation with another specialist. My usual Ears Nose and Throat doctor (ENT) had gone to study in England, and so I was again preparing myself to tell my story to a stranger.

Prior to meeting this new specialist, I had carried out some hearing tests. The first test, as always, was a pure tone test, which tests the ability to hear a number of different tones (beeps), using a pair of soundproof headphones. Next was the usual bone conduction test which measures the ability to hear tones, by placing a small bone conductor behind the ear. Normally, these are the two tests I undertake before speaking to a specialist. This time however, I had been asked to carry out an additional assessment: a speech recognition test. This test is similar to the pure tone one, but instead of listening to different tones, the patient listens to words spoken at different volumes, which they are then asked to repeat. The speech reception threshold shows how well the individual hears and understands ordinary conversation. I had carried out this test before, when I had consulted with the specialist in London. That test had been conducted in English; this time however, I would be doing it in Spanish. When I completed the test in my mother tongue, I found that even if I couldn’t clearly hear the whole word, I could guess what the word was; based on the associated tones I could hear, and my knowledge of the English language. This time I was obviously at a disadvantage. I am not fluent in Spanish, and this felt more like a language test than a hearing one. The audiologist assured me that the words would only be two syllables and would be very basic.

Well, the test started off OK, with me repeating a few simple words being played into my good ear. Then things got more difficult. I found I was concentrating so hard on listening to the two syllables of each word that I either ended up missing the start of the word or the end of it. And, as asking the audiologist to replay the word wasn’t an option, I ended up just saying the one syllable that I knew I had heard. This carried on with me grimacing at every non-word I was saying. Then the audiologist turned up the volume and I was in immediate pain. I looked through the glass screen at her and pulled a distressed face. She spoke into her microphone and asked if it was too loud. I told her it was, and she said she would turn the volume down. She assured me she had done this, yet I continued in pain, with the distressed look on my face, as she continued to play more words at me. I was relieved when the test was over, and when she came into the booth where I was sitting to change the headphones over, in order to test my deaf ear. I then sat patiently whilst the test was carried out on my deaf ear; aware that the audiologist was on the other side of the screen, busy playing Spanish words into my deaf ear, yet unable to hear them. Some minutes went by, and then she played the words really loud into my deaf ear. I was again in discomfort, yet she didn’t turn down the volume. The noise was distorted, yet I was able to attempt to vocalize some of the sounds. Then the test was over, and I was asked to wait outside.

Over 3 hours later I was called in to a consultation room to speak to the new specialist. The head-teacher of the school I work in had kindly suggested my Spanish friend accompany me for this consultation, to help with translation. I had been told that this new specialist would be giving me some therapy to help me cope with my sensitivity to sound. I had also been told that this new specialist didn’t speak any English. I knew I had an adequate level of Spanish to be able to understand the main points of discussion. I would however, find it difficult to describe any sensations associated to different volume levels or types of sound.

Well, thank goodness my Spanish speaking friend was with me. The specialist mumbled his way through the entire consultation. He barely even moved his lips as he spoke! As someone with a hearing loss, it is very difficult for me to understand someone if they do not speak clearly. Even my hearing friend who speaks Spanish, had to move closer to hear what he was saying, and also asked him to repeat himself on more than one occasion. As someone with hearing loss I also find it difficult to hear speech if there is any background noise. And, a few minutes into the appointment, the distractions commenced.

We were sitting in a small square consultation room, and at the far end of the room was an open doorway which led to a corridor where staff were busily chatting and walking from room to room. In addition to the almost inaudible muffled tones being uttered by the specialist, the added distraction of the staff in the corridor further hindered my ability to follow what the specialist was saying. Then two people entered the small consultation room. One of people was a young-looking guy wearing a white lab coat. He proceeded to the sink on the right-hand side of the room. He turned the tap on, and started to do something which sounded like it involved a scrubbing brush... Chat chat chat, clomp clomp clomp, swoosh swoosh swoosh, brush brush brush… mumble mumble mumble…The brushing and the sound of water flowing rapidly into the sink, mixed together with the corridor noise, forcing the specialist’s mumbling to grow more distant. The other person who had entered the room was a female nurse, who proceeded to the left-hand side of the desk where we were sitting. She started flicking through a stack of patient’s files; pulling them out of slots of a metal trolley, and flicking some more… chat chat chat, clomp clomp clomp, swoosh swoosh swoosh, brush brush bush, flick flick flick… mumble mumble mumble… the specialist’s indistinct tones were drowning in background noise. At one point he even had a piece of paper covering his mouth, which meant that I wasn’t even able to observe any slight movement of his lips to gain some clue as to what he was saying. What if I was a lip-reader?! I imagined a page from a puzzle book; the kind where there is a line drawing where you have to circle what’s wrong with the picture.  Well, if the aim of the puzzle was to highlight the aspects of this scenario that were making it a difficult environment for communication for someone with hearing loss, I’d be circling almost everything on the page.

I watched as the specialist quickly scanned the A4 booklet of notes that had been written about me, by his predecessors. I took a breath and focused on staying patient and prepared myself for the usual inquiries that would force me to relive the difficulties the past year had brought. Predictably I was soon asked the standard questions. When did it happen? Was it sudden? Have you tried a hearing aid? He told me that my right ear was functioning well. I assume he must have discounted the results of my speech recognition test, to come to this conclusion. He told me that the most important thing was to look after my right, only-functioning ear. He advised me on my diet. Since losing my hearing I have had various doctors and specialists suggest many things that I should not be eating or doing, in order to protect my remaining hearing. This time the list included, amongst many other things; no alcohol and no caffeine. I was told to avoid using certain types of hair dye, gold, and numerous types of antibiotics. There were countless other things on the list that could prove toxic to my ear, of which I had no idea what they were. I was to avoid loud music and high noise levels. My friend explained how I work in a school. The specialist said that a school environment was OK…I often think that people don’t realize how loud a classroom, or an infant school playground can be!

The specialist had a blunt manner. He seemed to be highly knowledgeable in issues regarding the ear; having all the textbook-theory knowledge, yet none of the practice. There was no evidence of him showing any understanding of how sudden hearing loss can affect someone’s ability to understand speech, not to mention their self-confidence or other associated emotional factors. He even managed to upset me; when he asked me how long I’d been living in Spain, and he commented how my Spanish should be better after such an amount of time. Hmm, maybe after obviously being a consultant for such a long time, he should have more on an understanding how to address patients with hearing loss?!…Nevertheless, as the consultation continued, my friend and I remained collected. We asked our questions, and finally we started to form a new plan of action…