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!

Waking up: My Septoplasty Story – Part 2

I awoke from a deep satisfying sleep with my first memory being a blurry vision of my boyfriend. Well, it was rather the shape of my boyfriend in a burgundy haze; the colour of the top he was wearing. I was moving past him in my bed. Bleary eyed, I blew him a kiss. He followed me into a recovery room. The room was brightly lit, and my eyes slowly started to focus. I excitedly told my boyfriend that I had been dreaming. I was so hungry and my throat was sore. I recollect eagerly telling the nurse that I was hungry and that although I didn’t eat meat or egg; that fish was okay. Maybe this was only a thought? My boyfriend told me later that he spent quite some time asking me whether I wanted to keep my mobile phone with me whilst staying in hospital overnight. I couldn’t make the decision. This scene is a confused dream rather than a memory to me. I saw the nurse gesturing with her arm and saying, “Adios”; requesting my boyfriend to leave. He gave me a kiss. He told me that my nose was bandaged, but that I looked okay.

Shortly, I was feeling more awake. There had been only one other patient in the room when I had arrived, and they had since been wheeled away. Now there was just me, in a space large enough for 5 more beds. There was a finger clip attached to my left index finger, which I believe measured the oxygen in my blood. Adhered to my chest in a seemingly random pattern, were circular stickers with electrodes to monitor my heart; these were attached to a machine situated behind my bed. Wrapped around my right arm was a blood pressure cuff which every hour, on the hour, inflated and took my readings. I was intravenously being administered, a steady supply of saline solution, antibiotics and painkillers. I was extremely well monitored.

There were numerous nurses that came to visit me and to check my vital signs. One of the nurses, evidently meaning well, spoke directly into my deaf ear; her lips pressed against it, with the intention of aiding my hearing. She must have been informed of my hearing loss beforehand, although evidently she hadn’t been briefed on which particular ear was affected. I didn’t have the energy or the emotional resolve to tell her that her efforts were being wasted on this ear. Later, after I guess a lack of adequate response on my part, she realised she was speaking into the wrong ear, and for the rest of the time she replicated her close-talking technique, into my hearing ear. I appreciated her committed determination to help me understand the proceedings. The dark green bed sheets were straightened by two other nurses, and within less than an hour of waking up I was happily straining my eyes to read a magazine. I didn’t want to go back to sleep yet. I already felt like I’d had a period of concentrated rest, albeit brief. I wanted to be conscious. I didn’t like the idea of being unaware of the activity around me.

I asked the close-talking nurse if I could go to the toilet; assuming she would hook my IV bottles onto the moveable pole, so I could wheel it behind me as I walked. Unfortunately, I was mistaken. The nurse collected something from a small cupboard and then returned to my bed with the object in question. It was a bedpan made of a thick paper material. She lifted up the dark green sheets and placed my paper throne in position and then walked away. Well, after a few minutes I concluded that there was no way my body was going to allow this to happen. Maybe it was a result of the anaesthetic. Maybe it was simply due to the fact that I hadn’t consumed any liquid all day. Or maybe, and most probably, it was because my body was in a state of stubborn shock. The toilet was only a few steps away from me bed – Why couldn’t I attempt to go there? I was lying down – Surely I couldn’t pee whilst lying down!? The nurse took the bedpan away after quite some time, without much comment.

That night was a restless one with merely fragments of disturbed sleep. My nose was packed with gauze-covered cotton, and there was a pad of gauze taped underneath my nostrils to soak up any blood. I also had gauze and tape wrapping around the outside of my nose. I could only breathe through my mouth. I was thirsty, yet I was only allowed a few sips of water that night, before the lights were turned down. I guess this, and the introduction of the paper throne, was part of the aftercare procedure for patients following anaesthesia. I had to sleep propped up at an angle to allow the warm trickle of blood from my nose to drain into the gauze. There was a clock on the wall to the left of me, and I lay watching the movement of the hands. I slept for what seemed like half an hour, yet after observing the clock, I realized only a couple of minutes had passed. Time was behaving strange. I guess this was a consequence of the anaesthetic, or the drugs I’d been given. There was a young male nurse who checked on me every hour during the night; each time making a note of my vitals. With each check he asked if I needed anything, and if I was okay. Between his checks I realized he was asleep in a chair around the corner from my bed. Early in the morning he asked me if I wanted to try and pee again. I agreed. I hoped this time I would allowed to use the facilities. But to no avail. He was soon sliding my paper throne into place. I waited and waited, urging my body to allow this unfamiliar process to happen. And then finally it did! The nurse seemed very happy with my achievement and exclaimed “Muy bien”! I had the impression that this had been a prerequisite task to be accomplished before my release. I breathed a befitting sigh of relief.

Roses are Red: My Septoplasty Story – Part 1

We were waiting in a room full of voices and echoes, and were discussing how to pronounce the word for ‘surgery’ in Spanish. There was a constant movement of people in and out, and around the room. Some would walk into the room wearing orange visitor stickers. Some were carrying a single red rose wrapped in a clear sleeve. It was Valentine’s Day, and the day of my operation to correct my deviated septum; to straighten it, to allow better airflow through my nose.

I was sitting with my boyfriend in the off-white-coloured waiting room. Around the perimeter of the room were rows of chairs, with metal frames and hard wooden backs that curved slightly into the seat. In the middle of the room were two more rows of the same chairs; back-to-back. There was a dropped ceiling with suspended ceiling tiles; the Styrofoam type that are often found in offices or classrooms. Some of the tiles were discoloured or stained with the light-brown outline of irregular shapes, and were interspersed with rectangular light panels. The walls were bare apart from two Van Gogh framed prints: his Sunflowers and a painting of some wheat fields. It was difficult to judge the time of day as there was only one window, allowing a small amount of natural light to enter the room. I sat, looking around the room and watching the movement of people. There were people here of all ages. I scanned the room observing their faces. Like a detective I assessed every person in the room. Were they wearing makeup? Jewellery? Nail polish? These were things I was told to strip my body of before the operation. Were they wearing comfortable, loose-fitting clothing? I was evaluating who was here for an operation and who was simply visiting a relative or friend. There was a small door off from the waiting room, to the left of where we were sitting. Some people walked straight through this door, with confidence and without the need for permission. Others had their name called by a nurse before entering. Some people came and went. Some went through the door without returning. Everyone seemed to be here for a different purpose. Every time the door opened, a sharp unsettled feeling attacked deep down in my stomach. Was it going to be a nurse calling my name? The waiting was arduous. After about 3 hours had passed we started to doubt whether we were in the right place. My boyfriend went to check; back to the original reception desk we’d passed through before entering into the room. My appointment was for 4:30pm. It was now after 7:00pm. We were playing the game again. We were in a Spanish hospital with no idea of the procedure for having an operation here. This was new territory for us. The receptionist confirmed we were in the right place, and that they were behind schedule.

When my name was finally called it was around 8pm, and the waiting room was almost empty. I was hungry and tired, from fasting since an early breakfast. My boyfriend and I walked through the door into a corridor that opened out onto a ward. In a small changing room I dressed in a hospital gown. On my feet I put elasticated blue foot covers that looked like delicate elf shoes. I completed my outfit by tucking my hair into a blue hair net; an action that reminded me of a short period of time spent working in factories, many years ago. We put my clothes in a locker, and retrieved the key: number 1. Then we went to wait in another room in which there were about 6 beds. I sat in a chair next to a hospital bed with dark green sheets. This seemed to be a recovery room. There were patients leaving the room after being given their hospital notes and Ziploc bags filled with medication. Some patients were in beds, with a relative beside them; waiting for them to feel well enough to return home. We waited here a while longer. I started to feel nervous.

Shortly, I was asked to get into the bed with the dark green sheets. I was wheeled through the hospital, into the lift, and then through some corridors. I was aware of my boyfriend changing position, moving from behind the bed, then to my side; endeavouring to keep up with the fast moving trolley. The two nurses who were controlling the bed looked tired and had sour faces. At an intersection of corridors one of the nurses mumbled something hurriedly in Spanish. She was telling my boyfriend to give me a kiss and to wait “over there”. The two nurses hardly slowed the motion of the bed, and I could see my boyfriend was still processing what they had said. I told him to kiss me, and as he swiftly moved towards me, I observed his confused face in the moment of our separation.

I was on my own now. I was wheeled to a corridor where I was left without comment from the two tired nurses, for what I guess was about half an hour. I lay in the bed with my good ear facing the wall. I could hear people; I think they were behind me down the corridor. They were the voices of women speaking in quick passionate tones. They didn’t sound happy. Someone was shushing them continuously. During my wait, a few people came to talk to me, and to read my medical notes. They all asked me similar questions: Where was I from? How should they pronounce my name? Do I have any allergies? All this was conducted in Spanish. I was happy to talk to people as they came to my bed. Talking was a distraction. During this time I was told that I would have to stay in hospital overnight, as it was now late, and there wouldn’t be time for me to recover from the anaesthetic. One of the members of staff asked me if I was warm enough. I told her that my feet were cold, and she folded a blanket, placing it over them. The anaesthetist also introduced himself. I think he said his name was Pablo. He was handsome, and had a kind face.

Without warning my bed began to move backwards. As the bed reached a doorway, the trolley was turned around and I was facing one of the tired nurses from earlier. I was going into the operating theatre. I remember the colour green. I made an effort not to observe the room too much. The kind nurse, who earlier had asked me if I was cold, came to speak to me. She questioned me as to whether I had noticed the feeling of warmth on my feet. She had positioned a heat lamp over them, and I thanked her. The anaesthetist was situated on my deaf side, and he was kneeling down, talking to me whilst holding my hand. Simultaneously he was using his other hand to pat my arm; trying to find a vein. I smiled as he talked. I couldn’t hear him. After a moment I told him I was deaf in my left ear, and he told me he would talk louder. He said jokingly that he would try to make the sound of his voice bounce off the wall opposite, and then back to reach my good ear. The cannula was inserted with a quick sharp sting, and the anaesthetist asked me to breathe some air from a mask made of thick black rubber. I breathed in the air, and then breathed in some more…

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 traveling to the surface, escaping into the air with a with a crackling sound. These sensations are sometimes accompanied by a 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 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 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 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…

One year on… My thoughts on my sudden hearing loss

It is one year since the day in the auditorium when I suddenly lost the hearing in my left ear. It has been a year spent attending appointments with various specialists, a year of being observed and tested, and a year of taking different medicines and trying hearing aids. I spent almost a year without working; trudging slowly through my days, with the feeling of frustration weighing heavily down on me. A year has passed and there have been no answers, and no improvement in my ability to hear. It has been a year that has damaged my confidence. A year that has chipped away at me; with every hurdle and setback diminishing my character. Yet it has also been a year of building myself up; grasping at ways to find strength through my adversity.

It still feels very recent. I still wake up every morning to the realization that I can no longer hear in my left ear. A part of me continues to cling on to the tiniest of hopes that one day I will miraculously wake up with the full ability to hear; that my hearing will re-emerge as quickly and as spontaneously as it disappeared. This hope is an inherent part of me that I’m unable to control or even want to suppress. Yet, this doesn’t mean I haven’t accepted the reality of my situation.

In addition to becoming deaf in my left ear, I have been left with: tinnitus, a sensitivity to loud noises, the inability to identify where sounds are coming from, and difficulty hearing in background noise. Yet worst of all, there is a relentless feeling of pressure I feel in both ears, though more so in my left. It is these other issues that are proving to be more difficult to manage than the hearing loss itself.

Living with hearing loss and associated symptoms poses everyday challenges. Even though I have had no actual improvement in my symptoms, I have a better understanding of my hearing loss. I am improving my coping techniques every day; achieving small triumphs that feel like fairy steps of success. Notably, the discomfort I used to feel when this first happened, when going outside my apartment into a world of noise, has now become a habitual sensation. Although it is very present, it is something I rarely think about; an unpleasantness that has now been forced to the background of my focus. Loud noises are still painful. The sound of emergency vehicle sirens, motorbike exhaust pipes, and the clattering of dishes, all cause me physical pain deep inside my ears. But I have also discovered some noises that bring me comfort. The sound of a gentle river, the wind brushing past tree branches, and rustling leaves force my mind from giving attention to any unwelcome sounds of tinnitus. I have found that wearing headphones helps to block out the noise of the Metro and noise associated with trains and public transport. For short periods of time I am now able to listen to my IPod through my headphones, and can enjoy music and listen to storytelling podcasts; this is something I thought I would no longer be able to find pleasure in, due to my sensitivity to noise. I have developed my understanding of practices that can affect my condition. I now realise that if I drink alcohol, eat something with a high salt content, or if I don’t sleep well, my tinnitus will be stronger. The presence of loud tinnitus and tiredness, in turn, means I will find it difficult to concentrate well on hearing tasks. Socializing 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. I have also learnt that with large groups of people and circular tables comes a lot of frustration!

It has been a year of firsts. There was my first run since my hearing loss, where I started to feel so much stronger, and more ‘myself’. There was my first train journey, where I watched the beautiful countryside through the train windows, with the sun on my face, and when I felt so happy to be listening to music through my headphones; thankful for the hearing I had left. There was my first time in a restaurant since my hearing loss, which taught me so much about the importance of selecting a table wisely.

It has been a year of being proactive; writing articles for hearing loss websites, and getting involved in fundraising campaigns for deaf charities.

It has been a year of ‘silly deaf moments’ and mishearing words: sitting with my boyfriend on a terrace and mishearing him say the word ‘parmesan’, and instead hearing ‘lederhosen’, and wondering why my boyfriend would want such a thing sprinkled on spaghetti!

It has been a year of feeling vulnerable. When I’m on my own in everyday places and situations, such as the supermarket or walking down the street, 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 worry about cars pulling out of parking spaces, and not registering them until they are moving towards to me. I worry about crossing the road and hearing the siren of an ambulance, and not knowing which direction to move out of the way.

It has been a year of frustration. I am frustrated in train stations and airports where I can’t hear the Public Address systems clearly. I become frustrated with bars that play their music loud, or that are bustling with chatter too loud for me to tolerate. I am frustrated at people who speak in mumbled words, or who turn their head away from me during conversation; meaning I am unable to hear parts of what has been said. I am frustrated at feeling like a burden with every time I have to ask someone to repeat themselves. I am sad that I am now unable to continue my career as a teacher in a lively classroom. Yet I am proud of myself for returning to work in a less demanding role, which in actuality is one of the most challenging things I have ever done. I still feel upset with myself when I struggle in conversation. It’s tiring trying to listen to conversation or to communicate for long periods of time. It’s tiring to be around noise. I am tired a lot of the time from trying to listen. I feel frustration in learning simple things again, such as keeping my balance whilst walking downhill. I feel frustration at there being so many questions that doctors don’t know the answers to. What caused my hearing loss? Is this going to happen to my right ear as well? Why do I often feel dizzy when I’m walking, yet rarely when I am running? Why does shopping centre lighting, stormy weather, and crowds of people, cause me to feel dizzy?

It has been a difficult year also for the people closest to me. I know it is hard for people to know what to say to comfort someone who is not ‘getting better’. I know it is difficult to know how to help. My friends and family have lived through this with me and have shown me overwhelming support. But, it is my boyfriend who has lived the experience closest to mine, and who has felt not only the frustration that I have, but has also learnt with me how to deal with my hearing loss. The unfaltering support, patience and care he has shown me, and continues to do so has undoubtedly given me strength to deal with the new challenges I now face.

This year has been difficult. Yet this year has had a huge impact on my personality, where my priorities now lie, and the way I view my life. I am stronger as a result of this year. It is also because of this year that I have realized the enjoyment I have in communicating through writing. By recording my experiences and thoughts in my blog, I have made sense of my feelings and gained strength. I hope also to have given others an insight into my world, and some of the difficulties experienced by someone with hearing loss.  Writing is a pleasure; one which I can thank that day in the auditorium for the moment the world to the left of me abruptly fell into silence.