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!

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.

Attack

It was a Monday morning and I awoke to the sound of my alarm. I had been sleeping well at night-time, for the past month or so, yet continued to wake up feeling drained. I was exhausted. I began to make my way through my morning routine, without the need to think about my actions. I methodically put the kettle on; took two mugs out of the cupboard (one for me and one for my boyfriend) and dropped tea bags into them; took out my water bottle from the fridge; and put a green tea bag into my flask, ready for work. I then headed to the bathroom to continue my habitual preparations for the day ahead.

Whilst in the shower, for a few moments I appreciated the feeling of the water on my head and body; washing away some of my sleepiness. Just as always, I began to cycle through the components of the advancing day in my mind; pondering over tasks to be completed during this time. And then it happened. Without warning, my eye-sight became blurry. I started to feel hot. Within seconds my surroundings inside the shower cubicle were spinning. I felt an uneasy disconnection from my body, similar to the feeling of unsteadiness that comes from drinking an excessive amount of alcohol. I could feel myself becoming short of breath. My ears were full with the feeling of pressure; causing a sharp pain. My legs started to feel weak, and I rapidly pushed my hands flat against the shower cubicle as I supported the weight of my body down towards the tray; moving into a crouching position. I needed air. I awkwardly forced the shower screen open. Then the nausea hit me; one last blow from the attack. I crawled to the toilet and allowed my head to bow heavily over the bowl. On my knees, my elbows pressed against the hard plastic of the toilet seat, I shakily positioned my arms upwards; enabling my hands to cradle my head in position. I stared wearily at the toilet water as it seemed to whirl around erratically.

After what I guess was about five minutes of extreme body weakness and breathing deeply into the toilet bowl to stabilize myself, I managed to crawl across the floor to where I had earlier dropped my night clothes. I was able to dress myself in my vest top and shorts and I slowly grasped the bathroom door handle; carefully testing the strength in my legs as I started to stand up. I began to walk the 15 or so steps towards the sofa. I was still feeling fragile. My body felt like it was in a continuous fall against the wall which I leant on with all my weight; shuffling through the kitchen into the living room.

I sat on the sofa and stared at my mobile phone. I couldn’t focus properly. I didn’t want to have to make the phone call. I didn’t want to have to call in sick again. I had only been back at work for a month since the summer holidays, and had already taken 2 days absence due to illness. I started to consider whether I could go to work. Could I cope with the motion and the crowdedness of the Metro train? Would I be able to walk up and down the stairs at school? Could I tolerate the classroom noise? Of course I couldn’t.

After making the call, I made my way to the bedroom, continuing to support myself with my hands against the wall. My boyfriend was still sleeping, as I slowly and carefully pulled my body onto the mattress and wrapped myself in the covers. I was cold. My boyfriend’s hand began to touch my hair, as if examining it with confusion; somewhere in the midst of sleep. I realized my hair was wet. I didn’t know whether I had finished washing it before the attack had happened. I didn’t wake my boyfriend. His alarm would be going off soon.

I spent the day on the sofa and slept away the hours. The reality of what had happened didn’t really occur to me until I woke up later that day.

Even though I often experience dizziness, I hadn’t had an actual vertigo attack since the day of my hearing loss; two years ago. This new attack brought the difficult times I had dealt with during the past two years, to the forefront of my mind. In the past, I’d been given numerous possible diagnoses to explain my hearing loss: Meniere’s Disease, Cochlear Hydrops, and Endolymphatic hydrops. Irrespective of the ultimate diagnosis, there was no escaping from the ramification of the abnormal fluctuation of fluid in my inner ear. Like a big slap in my face, this new attack forced me to comprehend the reality of my situation. I was never going to be able to get away from this. It wasn’t going to get any better. I was, in this moment of contemplation, emotionally back to where I was 2 years ago: scared at the prospect of living with this unpredictable condition.

“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.