Eva’s Hearing Loss Story

‘… a few months back, I decided that I was going to do whatever I wanted to do, without hesitation…What happened? I wasn’t perfect, but I was pretty damn good!’

Following my hearing loss in 2016, I started writing a blog as a way of documenting my thoughts, feelings and observations. It is through my blog that I have connected with many people who have experienced different forms of hearing loss, all with their unique stories.

Hearing loss can present many challenges, both practical and emotional, to the lives of those affected. When we exchange hearing loss stories, we have the opportunity to increase our understanding of the difficulties that living without full sound can bring, and we can use this knowledge, and the advice of others, to develop our coping mechanisms. I have realised the comfort in sharing experiences. Sharing my story has helped me to feel part of a supportive community and I feel less alone in my hearing loss journey.

Let’s Meet Eva

I first ‘met’ Eva in April 2019, when she contacted me through my blog, two months after experiencing a profound sudden hearing loss in her left ear, very similar to mine. She also has tinnitus and some slight balance issues, which accompany her hearing loss.

Eva is 45 and is from Southern California. She enjoys hiking in the mountains and the beautiful Californian terrain, playing golf, yoga, attending her local book club meetings, and spending time with her friends and family. She was working as a director in the business office at a local college but recently stepped down from this demanding position as a result of her sudden hearing loss. She is now in a less demanding role at the college and continues to work full-time.

She has a positive approach to dealing with her single-sided deafness and is working to recover her life since her loss. Eva and I have talked a lot about hearing loss grief, something which we both identify strongly with. She recently remarked, “I hope someday soon my usual cheery self will be my default setting again and not something I have to work so hard to achieve each day. I’m getting there and have made tons of progress.” She recently acquired a CROS hearing aid and she is currently trialling it to see if it will provide her with adequate support. She says, “The jury is still out”.

Eva and I have formed an online friendship, based on regular communication through Email. She kindly allowed me to interview her, during which she gave a very honest account of her hearing loss story…

Eva, has your life changed since your hearing loss?

The first six months following my hearing loss were significantly difficult, but things are starting to settle now that it has been 9 months.

At first, I could not sleep. I do not know if it was tinnitus or anxiety, or my body freaking out due to not receiving input from one ear. I would wake up in a severe panic any time I’d fall asleep for even just a few minutes. I am sleeping much better now, my body has adjusted. It is still not as good as it was before the hearing loss (I was a great sleeper, could sleep 8 or more hours straight if you’d let me), but I am getting at least 4 hours per night each night.

I also had a lot of sensitivity to loud noise, so it was difficult to be in many situations, such as restaurants, church, family parties, etc. I kept pushing myself to be in noisy situations and I find that I am more used to it now, it doesn’t bother me very much anymore. Loud noises would sound so terrible as they entered my damaged ear and would cause awful noises, it still does but I am more used to it now.

Of course, my limited hearing makes certain situations difficult. I have to lip read a lot more, I’m getting better at it. I am very aware of where I am in a room to ensure I will be able to hear. Sometimes people call out to me or approach me from my deaf side, and I have no idea they are there. I am often surprised to see someone standing next to me, sometimes they are talking to me and I have no idea.

Finally, I feel this has greatly affected my relationships with those closest to me as it is difficult for them to understand why I am down. I try really hard not to be down, but it is difficult and I think they may become tired of my negative energy. I know I will come out of this, but it is taking time and I cannot force it. I need time to grieve.

What have you found the most challenging about living with hearing loss?

Strangely, the hearing loss itself is not the most challenging. It is challenging, but my one good ear provides sufficient hearing to function in most situations. The more challenging part is the psychological and emotional part. The grief, the depression, the anxiety, the inability to sleep, the toll it has taken on my relationships, the blow to my self-confidence.

What advice would you give to someone who has recently experienced a sudden hearing loss?

I believe meditation, taking walks, and positive journaling has helped me tremendously to cope with the psychological turmoil that comes with sudden hearing loss. I think any person, healthy or not, should start practicing meditation, so that when something terrible strikes (and it will!), you have built experience meditating. Same goes for taking walks and positive journaling. It is very difficult to get used to your entire world sounding different, the tinnitus, etc. and you can never escape it, so keeping your mind calm and focusing on other things (by meditating, journaling, taking walks) will help get you through.

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Eva also gives encouragement to others and shares her advice in my Facebook support group. In a recent post, she shared her positivity with the other group members in an inspirational comment:

‘… a few months back, I decided that I was going to do whatever I wanted to do, without hesitation. I was going to end the negative self-talk and the fear and just get out there and do my best. I got on an airplane, I swam underwater, I went dancing at posh night clubs, I went to a concert, I went hiking on jagged trails, all things I was either terrified to try (irrational fear that my ear would hurt or blow up or something crazy) or things that I thought would be overly difficult where I’d look like a fool. What happened? I wasn’t perfect, but I was pretty damn good and I felt proud and more encouraged each time. I haven’t stopped since and I find that the more I subject myself to it, the better I get at being in crazy, noisy, rocky places where I thought I’d never be able to function again.’

I really admire Eva’s optimism and motivation in moving forward with her life following her hearing loss. Thank you, Eva, for sharing your story.

 

This article was recently published by Hearing Link.

Learning a New Language with Hearing Loss

Quite surprisingly, I feel that I have developed some skills that ‘hearing people’ may not be as adept at employing in communication as those without full hearing ability; skills that actually help me to comprehend a second language.

I have been living in Madrid for nearly 5 years. During the first two years, I was actively learning Spanish. I was attending evening classes, listening to daily language-learning podcasts on my commute, and was making an effort to converse with Spanish members of staff at work.

My sudden hearing loss happened at the start of my third year in Spain, and since then there has been a marked change in my ability and confidence in learning a second language. Now, over two and a half years following my hearing loss, I still feel like I haven’t addressed this deflated self-confidence.

After I lost the hearing in my left ear, I didn’t return to the evening classes. The sessions were heavily structured around mixing learners together to work in pairs or small groups, requiring them to contribute to the discussion. During each class there would be long periods of time involving many people talking in their groups, which meant overlapping voices, bouncing around the small sparsely furnished classrooms, making hearing and focusing any particular person’s voice very difficult. There were students from many different countries, which would add another obstacle to language learning in a class; with only hearing in one ear comes a difficulty understanding the different intonations and complexities of accents.

As I gradually started to discover mechanisms to manage life with single-sided deafness, I also began to realize that the matter of learning Spanish had been unintentionally suspended during the prior months. And, since returning some focus to my Spanish communication skills, I have realised that learning a language following a hearing loss can present some challenges.

My preferred way of learning Spanish was always through hearing it: by listening to podcasts and eavesdropping on conversations. I continue to be able to recognise Spanish words which I am already familiar with, particularly ones used habitually in conversation. New words, however, pass by quickly in speech, before I have time to think about the way they may be spelt or correctly pronounced. It is now more of a challenge to hear all the phonemes in a word which makes it difficult to identify new words and phrases accurately. Previously I could hear a new word once or twice and be able to spell it. Now, it takes many listens, and sometimes I just can’t hear it clearly.

When learning a new language, it generally takes time to process what has been said in conversation or an instruction, before reacting. Often it has been moments after speaking to someone when I realise what has been said, and by that point, the conversation has perhaps moved on. Similarly, with my hearing loss, it can take a moment to consider spoken information, which I may have only partly grasped, before attempting to decode what has been said. And so, a language learner who also has hearing loss may need extra time for reflection in conversation to enable comprehension.

A pause in dialogue may suggest to a native speaker that they have not been understood when their conversation partner is a language learner. If I ask a Spanish speaker to repeat themselves or if I say ‘pardon’ to signal I haven’t heard what they have said, they often reiterate their words in English, after hearing my accent. They assume it is a matter of misunderstanding due to language ability, rather than a hearing concern. This can be frustrating. I appreciate someone making an effort to speak to me in English with the intention of being helpful, but conversely, it isn’t aiding my language learning or confidence. I know my understanding of spoken Spanish is good, but with the abundance of background noise in public places, there are rarely the ideal listening conditions to facilitate this.

With my hearing loss came a difficulty in gauging the volume of my voice when there are other noises present. If I speak in Spanish and I don’t receive a response, I quickly lose confidence in my words. I usually assume I have pronounced or phrased something incorrectly. But, maybe at times, the issue isn’t my Spanish, rather that I simply speaking too quietly and am not being heard.

Quite surprisingly, I feel that I have developed some skills that ‘hearing people’ may not be as adept at employing in communication as those without full hearing ability; skills that actually help me to comprehend a second language. My hearing loss has prompted me to develop my skills in interpreting tones and in extracting meaning from fragments of dialogue. I am accustomed to filling in gaps left by undetected or misheard words in speech. When someone I know well, such as my boyfriend or my sister, makes a quick comment without first getting my attention, I may hear a collection of tones rather than words. Using my familiarity with their common speech patterns and knowledge of context I can often make a correct assumption regarding what they have said, sometimes without actually hearing a single word. When applied to communication in Spanish, I am able to use this skill to make conjectures, and while this method isn’t conducive to gaining a thorough understanding of a conversation, I am generally able to grasp the essence of a discussion.

I never really appreciated how much I depended on my hearing when learning Spanish. Although it can be challenging and may demand a lot of patience, hearing loss isn’t a barrier to learning a new language. There are many ways to learn a language and there are many resources available, such as phone apps and podcasts with transcripts. I now realise that in order to continue progression in speaking and listening tasks with my hearing loss, I will benefit from focussing more on the written aspects of Spanish. Visual familiarity with new words and sentence structures will help me identify these in dialogue. Perhaps, most importantly, I need to concentrate on building my confidence in continuing to learn a language without full sound.

If you have experience of learning a new language with hearing loss, I’d love you to share your stories and any tips you have. Please feel free to leave a comment.

 

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

 

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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 therapist’s 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 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 a 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 the 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 into 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.

Working With My One Ear

I used to almost consider my hearing as a super strength; it was a sense I relied heavily on as a teacher of young children. In fact, a couple of years ago I underwent a hearing test, as part of a staff medical assessment, and the audiologist commented on how remarkable it was that I was able to hear even the quietest of tones above the background noise of the children in the corridor. As a teacher, I was able to identify the owner of any voice in the classroom, without having to turn and see their face. I was able to pinpoint the precise location of where a voice was coming from, and could swiftly turn around to face the person who had made the tiniest of noises or uttered a sound in the quietest of voices; with an ease of motion gained from years of experience teaching infants. Only after my hearing loss did I realize how much confidence I placed in this ability. My superpower was now gone, and I was learning to survive in a classroom, and a school setting, without it.

I had resigned from my job as a teacher of 4 and 5-year-olds. Working full time in a classroom wasn’t an option for me anymore, due to the amount of noise exposure I would have. My new job was working as a learning assistant. My new job involved some time supporting a teacher in the classroom; some time covering teachers when they would be in meetings or planning lessons; and some time working with individuals and small groups, in a quiet environment, outside of the main classroom.

With only one hearing ear, I am unable to locate sounds. If a child speaks to me in a classroom, and they are not standing in an obvious position, I will have no idea where the child is situated, and will spend some moments looking around trying to determine their position. Similarly, if I am sitting in front of a class, and a child shouts something out, I cannot rely on my listening skills to identify the culprit, and will instead search for a guilty-looking face. With time I have discovered that, when a child makes an inappropriate noise, if I say, “Who was that?” in a stern voice, without moving to look, the other children will immediately turn or point to the perpetrator!

There is the difficulty of being unable to focus on spoken word over background noise. If a child tries to speak to me in the classroom when the rest of the children are busy carrying out activities, I have to make sure they are on my hearing side, and very close to my ear, in order to be able to hear what they are saying. There have been times where I am concentrating on something a child is saying to me, on my hearing side, when all of a sudden I have felt a vibration or a whisper of a breath in my deaf ear, and I’ve turned around, only to be startled by a child speaking intently into this ear!

Working in an Infant school is a demanding role for someone with a sensitivity to noise. The children are young, and so naturally are often noisy. As well as the obvious loudness of children’s voices in the classrooms and the corridors, there are also some difficult situations I can’t always predict or plan for. There is the painfully-loud noise of a fire alarm drill; the loudness of music played in assemblies and music lessons; the intense volume of other staff member’s voices in staff meeting debates that often overlap with each other, becoming unintelligible to me.

There is my lunchroom nemesis. The school dining hall is a space with an absence of soft furnishings. There are neither carpets nor curtains to absorb the abundance of sound produced in this room. Inside this space are long tables, and glass windows that frame the full length of one side of the room. The opposite side of the room opens onto to a small utility area, featuring a large-scale kitchen sink. This area is used for rinsing the children’s lunch trays with a high-powered rinsing tap. During lunchtimes this room is an abundance of energy. The long tables brim with children. The room fills with chattering voices, the clinking of cutlery, the banging of plastic trays against bins to rid them of any leftover food, and the sound of jets of water spraying into a metallic sink. The sounds seem to bounce around the room from the glass windows, to the hard floor, and to the metallic kitchen area; rarely being absorbed, and mixing with the new sounds being made every moment. I have been using my time spent in this room as part of my sound retraining therapy; getting used to everyday sounds I find challenging, and to help my brain tolerate noises that at present seem too harsh or too loud. As well as battling with the discomfort of the noise in this room, I also have the issue of socializing. Lunchtime is often the only time members of staff have, in the school day, to have a quick chat. In this room, if someone sits next to me on my hearing side, I can usually conduct a conversation with a little effort; making sure my ear is close to the person speaking. However, if someone comes to sit next to me on my deaf side, I won’t hear them approach. This means I continuously check this space to see if anyone has sat down. If there is already someone sitting there, I find myself constantly observing their face to determine whether or not they are talking to me. I often find myself eating my lunch quickly to avoid the noise exposure and communication difficulties. I know this isn’t helpful in moving forward in dealing with my nemesis, but sometimes, when lunchtime arrives, I’m so tired and it’s hard to concentrate. The other scenario is that I make a big effort to start and hold a conversation with the person sitting on my deaf side. This means I have to turn my body around to face them, to have any chance of hearing their dialogue. This makes eating my lunch a difficult task, and hence means more time spent in this room; my nemesis.

Then there was The Cough. I was in a classroom, covering for a teacher, and every few seconds one of the girls would burst into a deep chesty cough. I encouraged her to drink water whenever she felt the need to, but this didn’t seem to provide her with any relief. Over the course of the hour during which I was in the class, I spent my time duelling with The Cough. Every time I spoke, there was a cough interruption. In the presence of The Cough, it was as though any audio in the room at that moment was being censored. Just like when watching something on television when there is a bleep censor used as the replacement of a profanity, or for when classified information is used; this was the consequence of The Cough. So, whilst sitting in front of the class, trying to teach, every few moments, I was for a few seconds unable to hear anything other than The Cough. I was also unable to gauge whether the volume of my voice was at an audible level. Similarly, I was unsure of how much to raise my voice for it to be heard over The Cough, without raising it so much as to be shouting. Then when a child spoke to me in the moment of The Cough, I had completely lost the battle.

There was an awkward moment at the end of the school day. I was again, in a class covering for a teacher. It was the end of the school day and I was reading a chapter from a story to the children. Within moments of beginning to read, a parent came to the door. She opened the door, and she wanted to speak to me. The door was at the opposite end of the room from where I was sitting with the children. I walked across the room to the door, and predictability the children burst into conversation. I walked towards the lady who was standing at the door. And so, the rumbling of chattering continued. The parent at the door was someone I was unfamiliar with. She began to speak to me. I couldn’t hear her. I moved my right ear towards her, closer to her mouth, to give me a chance at gaining some understanding of what she was saying. Well, I was momentarily perplexed by what happened next. The lady turned to face me. She put her hands on my shoulders, and proceeded to kiss me on both of my cheeks! She had unknowingly mistaken my advancing towards her in order to hear her, as an attempt to initiate this customary Spanish greeting! I observed the tradition, in a brief confused state, and uttered a nervous laugh. I then continued to stand ‘too close’ to her as she proceeded to speak to me. I’m sure she felt the awkwardness, but I’m also very sure she had no idea of the reason for it.

Although the majority of my colleagues are aware of my hearing loss, people often seem to forget. Words are habitually spoken to me in passing in a busy corridor, or across a noisy classroom. I consider these moments a complement. I must not be visibly struggling.

Above all, I am tired. I am working in the hearing world, yet this is a world that I don’t entirely fit into any more. The level of concentration and energy needed to focus on the spoken word all day is exhausting. Working in the hearing world, I am always visually scanning my environment in order to identify the potential movement of speaking lips. With the exhaustion comes, at times, almost deafening levels of tinnitus. With tiredness and noise, the pressure in my ears builds, like a balloon skin being pulled tight; a balloon full of air pushing against the inside of my ear and spilling out into my head, causing my ears to hurt, and the hum of a daily headache.

Every day is a challenge. Working life is still really difficult and I often feel completely drained. But I am glad to be filling my days. I am happy to be making progress in getting some ‘normality’ back into my life.

Specialist Appointment Part 2: Ear Bubbles, a Blocked Nose… and a Plan

…The specialist only briefly addressed my noise sensitivity. It had been my understanding from my previous appointment, with the previous specialist, that the reason for me meeting with this particular Ears Nose and Throat (ENT) doctor, was to receive some sound therapy. This therapy would help retrain the auditory processing centre of my brain to accept everyday sounds. Instead of therapy, I was given a suggestion of a procedure I could perform by myself. The advice I was given during this consultation was to subject my hearing ear to noise or music, at a volume level which I found too loud, for a period of 20 minutes. I was to do this 3 times a day. I was given the example of listening to nature sounds on my headphones, whilst keeping the volume as loud as I could possibly bear it. The ENT specialist told me that eventually, I would be able to turn the volume up to higher levels. He told me that there were special hearing centres I could go to, but these would cost money, and it was customary and also effective for patients to carry out this treatment themselves. I found it curious that in the same appointment in which I had been told to avoid loud noises in order to protect my only hearing ear, I was also told to subject the same ear to noise that would cause me discomfort.

After feeling yet a little more deflated on realizing the only therapy or support this specialist was going to offer me, was the small piece of advice he’d just given me, and not a series of therapy sessions, which I had been hoping for, I started to hastily ask my friend to enquire about a few more issues; as the feeling of outstaying our allotted time started to encroach upon us.

I asked my friend, who had accompanied me to help with translation, to question the specialist about the operation I had been told about months ago, which would straighten my nasal septum, in order to help me breathe more easily. The specialist had no visible response to this enquiry, and he continued scribbling notes into my medical history booklet. With perseverance, intent on maximizing my time with the consultant, I asked my friend to mention the feeling of pressure I have in my ears, and about my bouts of dizziness, and to ask if there was anything I could do to relieve these symptoms. Without raising his head to acknowledge us, he pointed to an examination chair across the room from where we were sitting, and he mumbled something inaudible. I obediently went and sat in the chair. I had sat in this chair before. I hoped that I wasn’t going to have the customary experience of having a viewing tube inserted into my nose, for the third time. The specialist put on a head mirror and some surgical gloves, and then he reached for an examination tool. This tool appeared less sophisticated than the viewing tube. The tool resembled a pair of metal pliers; with thinner handles, and two hooked jaws. He inserted the contraption into my nose, with both of the metal hooks sliding into each nostril respectively. He swiftly and forcefully lifted the handles of the device upwards at an angle, to view inside my nose; examining the structure of my septum. He said that my nostril was completely blocked on the left side, due to the deviation of my septum. I already knew this. I have been unable to breathe through my left nostril for as long as I can remember. I had also had this same discussion, two times previously, in this same room, with two other former specialists. This information was in my medical notes, in the booklet that was sitting on the desk in this same room.

Then, without further explanation, I was asked to leave to room. I was instructed to go, for perhaps my fifth visit over the past year or so, to have a tympanometry test. A tympanometry test is often used to assess the function of the middle ear. The results of tympanometry are represented on a graph called a tympanogram. This is a graphic representation of the relationship between the air pressure in the ear canal and the movement of the eardrum, and the tiny bones in the air-filled middle ear space. When the eardrum is disturbed by a sound, part of the sound is absorbed and sent through the middle ear while the other part of the sound is reflected. The information derived from tympanometry provides information regarding middle ear function, especially Eustachian tube function.

The nurse who carried out the test was a nurse I was familiar with. She was friendly and jolly and seemed intent on carefully explaining everything to me. In the interest of respecting her, much appreciated, caring nature, I acted as though I was unfamiliar with the procedure. She kindly explained the process to me, through my friend; my translator. An ear probe was promptly placed, first into my hearing ear, and then into my deaf ear, to test the responses. As the probe in my hearing ear caused the air pressure in my ear canal to change, I heard some low-pitched tones. When my deaf ear was tested, it remained silent, with only the sound of tinnitus prevailing. While the pressure was changing, measurements of my eardrum’s movement were being taken and recorded. The test was over in a few minutes. When the nurse examined my results, she scrunched her face into a painful expression. She asked me if I have the constant feeling of being in an aeroplane. Yes! I have an unceasing pressure in my left ear, and though not as pronounced, in my right ear too. It is the feeling of pressure, comparable to being in an aeroplane and not being able to pop my ears. I also have the occasional sound of little bubbles similar to those in the foam made by bubble bath, or bubbles in fizzy drinks travelling to the surface, escaping into the air with a crackling sound. These sensations are sometimes accompanied by sharp deep and momentary pain. Yes! This pressure is causing me constant discomfort and is more difficult to manage than my actual hearing loss. Yes! This pressure I feel is what I’ve told every specialist about. Yes! This wonderful nurse had immediately identified this as a significant source of discomfort and was showing empathy towards my situation. She was the first person in over a year of consultations, to not just read my results and identify a problem, but to actually show some understanding of the unpleasantness I was experiencing.

I returned to the consultation room and showed the doctor my tympanogram. After regarding it for a moment, he told me with confidence that the reason I have the feeling of pressure in my ears is because I can’t breathe properly. This is not what I’d been told before. I had been told that there could possibly be a link between my inability to breathe effectively through my left nostril, and my ear pressure. I had believed that the pressure was a consequence of my hearing loss. The onset of the feeling of pressure had, after all, coincided exactly with the moment I lost my hearing. I told him that it had not been communicated previously to me that the issues with my nose were the certain cause of the discomfort in my ears. He repeated with a vehement assurance that the pressure in my ears was a direct result of my difficulty breathing. This was something new to me.

The specialist then questioned me about my sleeping habits. I told him how I have struggled to sleep, to the best of my recollection, for most of my adult life. I told him how I find it difficult to fall asleep, due to problems breathing. I told him how my brain seems to wake me up just as the rest of my body feels like it’s going to sleep. I told him that I am only able to sleep effectively whilst lying on my left side. If I sleep on my right side; the side of my functioning airway, the nostril closes up which means I can’t breathe at all through my nose. He told me that I needed the septoplasty. This operation would straighten my septum, allowing for better airflow through my nose.

There are long term effects of a deviated septum. In my case, having a deviated septum has meant that not only have I had many sinus infections, but I also often get throat infections; as I regularly breathe through my mouth. The blocked nasal breathing due to septal deviation also has a negative effect on the Eustachian tube, which means drainage from the nose is not efficient. If what the specialist was saying was correct, having the operation could lead to better tubal drainage from my nose, and as a result, this could relieve some of the pressure I am feeling in my ears.

My hope for this operation is that it will help me feel more comfortable whilst sleeping at night, as I will be able to breathe through both nostrils. After some time I should start breathing through my nose more during the night, and therefore shouldn’t wake up as much; as a result of having a dry mouth, or as a response to my body warning me that I am not managing to get enough oxygen into my lungs. In consequence, I hope I will also feel more refreshed when I wake up. My most cautious hope, however, is for an eventual reduction in the pressure I am feeling in my ears.

And so, after over a year of rapid changes of emotion, I am once again feeling hopeful…

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 into 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 with 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 the 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 on 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 of 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…