Tag: hope

A Meeting With the White Rabbit

I was sitting opposite her, at her desk. The tip of her nose was a smudgy black, and the area between her nose and top lip was a thick oily white, with a modest covering of black whiskers. She looked at me through her thin, black-rimmed glasses. When she stood up to make me a cup of tea, I noticed a cotton wool pom-pom tail attached to her lower back…

It had been 8 months since I had lost the hearing in my left ear. It had been 8 months since I had been living with tinnitus, dizziness, a sensitivity to loud noises, and the relentless pressure in my ears. It was almost 8 months since I had last carried out a day’s work. My headteacher had asked me to come to the school to attend a meeting with her. I was nervous. I wasn’t sure what the outcome of the meeting was going to be. I couldn’t bear to be around loud noises. Returning to my position as an Early Years teacher – a teacher of 4-year-old children – was not a possibility for me at this time. I wondered if there could be any other options for me; any other work in the school that I would be able to do. I wondered if, due to the amount of time I’d been sick, I would be asked to leave.

I arrived at the school on a sunny Monday morning. As I pushed open the stubborn metal gate, I was filled with apprehension and nervousness. I could hear children playing on the other side of the gate. As I walked into the small patio situated in front of the school, I was immediately struck by a magnitude of colour. The children weren’t wearing their usual dark blue uniforms or stripy blue smocks, but instead, they were all dressed in fancy dress costumes. It was Book Day in school. There were children dressed as Mr Men characters, The Very Hungry Caterpillar, Dr Seuss’ Thing One and Thing Two, and animals, pirates and princesses. One of my colleagues promptly came to give me an all-encompassing hug. This alerted the children to look my way, and when they realised it was me, a large group of children, all of whom I had taught the previous year, ran to me and hugged me from all directions. They were chatting to me excitedly; asking me lots of questions, showing me their costumes, and screaming with excitement. My ears were hurting from the noise. I wasn’t able to focus on any of the children’s words. However, it was wonderful to see them, and to be surrounded by the energy of young children again. I stayed for a few minutes on the patio, soaking up the excitement, and receiving more hugs from children and members of staff. I had been working in this school for three years. It was a small nursery and infants school, and I had made close connections with many of the staff members, and of course, with the children. It felt so nice to be immersed again in this vibrant world. It felt so nice to absorb a little of what to me, was my former ‘normality’. I missed working as a teacher. I missed my days of creativity. I even missed the absolute exhaustion I used to feel at the end of the school day; knowing I’d applied all my energy to give my pupils the best possible start to their education I could offer.

I entered the headteacher’s office. She was dressed as the white rabbit from Alice In Wonderland. She stood up from behind her desk, and as she gave me a hug. I momentarily became aware of the humour in the situation. The irony that such an important meeting, one that could possibly affect my future work opportunities in this school, would be between me and the white rabbit. It was bizarre and felt somewhat surreal. This is the nature of working in an infant school! She asked how I was doing. She told me that because I was good at my job, she didn’t want to lose me. I hadn’t prepared for this kind of compliment, and the weight of it triggered my emotions. I could feel tears welling up in my eyes, but refused to release them; breathing deeply and wiping away any evidence of my weakened character. The past 8 months had been difficult, and my confidence was drained. She asked me how I thought I would cope as a teacher, in a busy classroom. I was honest with her, and told her I would find it extremely difficult. She said she didn’t want to set me up for failure. She then went on to suggest some other possible roles for me. There was a language school that was owned by the same company as my current school, where I could possibly work; teaching small groups of adults. There was also a possibility of working with older children. However, these didn’t seem like favourable options. My teaching background was firmly rooted in Early Years education, and it was with this age-range where my teaching passion lay. We discussed other options and came to the conclusion that working with small groups of children, away from the noise of the classroom, would be a role that could offer me the best chance of success.

After over an hour of talking about my options, my headteacher told me that she could offer me a position as a teaching assistant. It would include some time in the classroom as well as time working away from the classroom; with small groups of children who needed extra support in Literacy and Maths, and in learning English. I had an interest in working with intervention groups, and in Special Needs education. I also had experience in these areas. This role would be a way of seeing how I would cope in a classroom. I wouldn’t be letting people down or feeling guilty if I had to leave the position, as I wouldn’t be responsible for a whole class. I would earn just over a third of my wage as a full-time teacher, but this was an opportunity for me to discover my potential and also recognise my limitations, whilst doing so in a familiar environment.

It has been nearly 3 months since my meeting with the white rabbit. I returned to work for the month of June. It was difficult. It was an experience that proved to be challenging and demanding on my diminished confidence, and hearing. My ears were painful at the end of the day, and on returning home each day I savoured times of quietness. But I completed the month, and am proud of what I achieved. I will be returning to the school after the summer to start the new school year in my new role as a teaching assistant.

I am now enjoying my summer holidays; feeling like I earned them, and am now up to date with my story 🙂

Review of My New Ear

Receiving my new ear was a positive experience. I was hoping my CROS hearing aid would give me some hearing ability on my left side. I was hoping it was going to give me a chance of hearing some elements of speech on my left side; to help me gain some confidence in communicating with others. I was hoping my CROS hearing aid would provide me with some support with hearing in situations with background noise.

Contra Lateral Routing of Signal (CROS) is a hearing aid technology for people with unilateral hearing. The CROS system is for a user who has relatively normal hearing in one ear and has hearing that can’t be aided in the other. The receiving behind-the-ear device on the deaf side transmits the sound to a device on the good side. The user hears the amplified sound from the deaf side in their good ear. The person hears the sound from the good side naturally in their good ear, without amplification.

I would be trialling the device for three months to see if it would be useful for me. If I decided that it wasn’t helpful, then I would be entitled to a full refund.  The CROS hearing aid technology was relatively new, and I’d read that some people really benefit from their CROS hearing aids. I even read someone’s account saying that with the aid they were able to hear in background noise, and it was like they didn’t have a deaf side anymore.

I was very happy with the way my new ear looked. The aid components were a similar colour to my hair and if I chose to wear my hair down, they were almost invisible. However, I actually liked other people to see them. When travelling on the Metro, for example, I would tuck my hair behind my ears so that they were visible. I liked that my disability could now be seen. Before I received my hearing aids, I had felt some frustration at the fact that people had no visible clue of any difficulties I might be having with communication. But with my new ear, if I failed to react to someone on my deaf side, or didn’t move out of the way for someone, I had a visible reason for my lack of response. This made me feel more relaxed on public transport, and in the city. I didn’t feel like I was constantly looking to my left to check if there was someone there, or if the lips of the person next to me were moving.

The main positive outcome of my new ear was that it was really wonderful to have some sense of hearing again in my deaf ear. If someone was speaking to me on my deaf side, the aid would make a high-pitched distorted sound, similar to a ‘beep’,  for each syllable spoken. These beeps would alert me to turn and focus my attention on my deaf side. Without the aid, I would be clueless about the presence of anyone next to me on this side. It was comforting to know that if there was a sound on my deaf side, such as someone speaking, or a car approaching from the left whilst I was crossing a road, then I would be alerted.

I also had some frustrating experiences with my new ear. The component in my deaf ear kept popping out. I would fit the mould correctly inside my ear, and within minutes, the aid would have squeezed its way out, so that it was no longer fit snugly. This meant that throughout the day, I would keep having to push the mould back into my ear. Also, although I was happy that I would be made aware if someone was speaking on my deaf side, the hearing aid didn’t help me understand speech. The high pitched beeping that occurred in time with spoken syllables became an uncomfortable sensation. After my hearing loss, I had developed a sensitivity to noise, and the aids job was to amplify sound; this obviously did not help my sensitivity situation. I became frustrated because I couldn’t make sense of the beeps. I knew they represented words, but however hard I tried I couldn’t hear any difference in the tones to identify letter sounds or words. My good ear was also hindered. My brain seemed to be paying so much attention to the strange sensations and uncomfortable noises brought on by the introduction of my new ear, that it struggled to concentrate and understand speech. So in effect, the aid actually hindered my ability to follow conversation.

One of my hopes had been for the aid to help me hear better in background noise. This was not the case. The mix of music and chatter experienced in a restaurant was overwhelming for my new ear. It would produce screeching sounds and amplify all the noise I didn’t want to focus on. Going out for a meal for a friend’s birthday with a group of people, was a confidence draining experience. I was only able to focus on one person talking, if I could get close enough to them with my good ear to hear them. This meant that I wasn’t involved in the dynamics of the group chatter. I felt isolated and I resorted to smiling and nodding at people to fake my following of any group discussion or jokes. This is a similar overview of my restaurant experiences with more than one person, when I am not wearing an aid. With the aid, the screeching noises also made it difficult for my good ear to focus on conversation.

The amplification of sound from my new ear of everyday city noise such as motorcycle exhausts, building works and sirens, was at times very uncomfortable. Therefore a walk around the city would result in me opening up my aids or covering them to stop them working when confronted with one of these overly intense sounds. My life in a busy city didn’t seem to be a suitable place for my new ear. The city noises when amplified were just too uncomfortable, and weren’t helpful in aiding me to decode speech or make sense of the noises around me. The only place where the amplification of noise didn’t cause too much noise discomfort was at home…but home was the one place I felt like I didn’t really need to wear my hearing aid. At home, I could generally hear OK when speaking with my boyfriend in the relatively quiet environment of our apartment.

There were also some strange experiences. One day, I had fitted the right component of the aid into my ear, when I started to hear what sounded like a radio. I had no idea where the noise was coming from. I thought that it was maybe something to do with the Bluetooth connectivity of the aid. Later I thought that it could have been noise being picked up from the television that was playing in the living room. Another time, I fitted the aids into my ears, and I realized that they felt much better; The sounds being produced seemed more natural and I wasn’t receiving the uncomfortable screeching noises. Then I realized the reason they were feeling more natural, was because the battery had died – The aids weren’t turned on! I was hearing normally in my good ear but without the interference of the beeping from the device into my deaf ear!

I had willed my new ear to work for me, but it hadn’t provided me with the support I had hoped for. After three months of wearing it, I returned my CROS hearing aid. I felt some sadness when saying goodbye to my new ear as it had provided me with some hope.

 

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Day Four With My New Ear

My boyfriend and I had planned to go to Cercedilla, a nearby mountainous town, an hour from Madrid by train. It is a beautiful town surrounded by nature, and is a perfect place for hiking. We were going there for the day to escape the busyness and noise of the city, and to enjoy a gentle walk in the mountains.

It was day four of wearing my hearing aid. I had already tested out my new ear whilst watching television and whilst walking outside. I was going to use this opportunity to try my new ear in some other, more challenging, situations; the Metro and on a train.

The first test was the Metro. I was standing with my boyfriend on the platform waiting for the train to arrive. Since losing the hearing in my left ear, and gaining a sensitivity to sound, the noise of the Metro approaching the platform can feel painful and unpleasant. I can feel it piercing deep inside my ears. Whilst wearing the hearing aid, this uncomfortable feeling was accentuated and my immediate reaction was to try and cover both ears with my hands in an attempt to soften the noise. When the train was approaching, a guy came to ask us for something. He was speaking to us and making animated gestures with his body. The noise of the train and his voice were processed by my hearing aid and were turned into a harsh series of beeps. I couldn’t understand what the person was saying. Every word he spoke made a metallic beeping sound when it reached my new ear. My boyfriend explained later to me that the guy had first spoken in Spanish. My boyfriend hadn’t understood the guy and had told him he was English; he hadn’t wanted to encourage conversation with the seemingly unsavoury character. The guy then replied in English, expressing to my boyfriend that he wanted to go to a café. I hadn’t comprehended any of this small exchange of words. I hadn’t even realized that the unusual character had spoken in two different languages. All the sounds of the Metro station were amplified in my new ear; the bell sound to signal the train approaching and the screeching noise of the decelerating train. My new ear was supposed to be helping me to hear better in the presence of background noise. This was not the case. The amplification of sounds and the accompanied beeping noises were dominating my listening skills, which in turn was distorting and obstructing the understanding of my good ear. Normally, without any hearing aid, I could have moved closer to the guy who came to speak to us and put my good ear next to him. I would have been able to hear some of what he was saying. The hearing aid had actually hindered any chance I had of following the conversation. I felt a momentary sense of deflation crushing me. Confusingly, however, I also felt some optimism. Although the metallic noises I was hearing in my new ear weren’t actual words and although they were distorted and difficult, it was still comforting to hear something; anything in my deaf ear.

Whilst sitting on the Metro I also noticed something positive. I was sat next to a girl who was sitting on my deaf side. She was talking to her friend who was standing up next to her. Normally everything would fall into silence on my deaf side on the Metro, and I would be oblivious to the world to the left of me unless I turned my head to see the activity. But this time, with my new ear, I was faintly aware that the two girls were speaking. Although I couldn’t hear any helpful letter sounds or words, I was hearing a slight beep for each syllable they were speaking.

The second test was the train station. On entering the train station I simultaneously entered my bubble of noise. Noises of train announcements and the chatter of people merged together. In large covered spaces with many sources of noise, the sounds seem to bounce off one another and encircle me; forcing me into my bubble. It is a bubble of misunderstanding and bewilderment. It is a bubble of pressure that dominates the inside of my head and ears. It is a bubble of isolation. My new ear was supposed to be helping me to hear better in the presence of background noise. Again, this was not the case.

As to be expected, the train was also bustling with the chatter of adults, and with the weekend excitement of children’s voices. On the train, I opened the battery compartment of my hearing aid on my deaf side, so as to stop my new ear picking up the train noise. I decided that I would prefer my left ear to be in its world of deafness; ignorant to the bustle that surrounded it. I played music from my iPod into my good ear. It was a beautiful sunny day. I’d been avoiding wearing earphones. I’d been avoiding music. It had previously felt too intense in my good ear. But on this day, above all the chatter and train noise, it felt amazing to be listening to music in my little world. On this day, although the tests of my new ear had proved somewhat disappointing, my body was showing me that it was starting to adjust to my unilateral hearing. Being able to listen to music for a short time without too much discomfort was a small but wonderful improvement. It was some encouragement. Small triumphs were spurring me on. During the train ride, with my music playing and the sun shining, and with my view of Spanish countryside whizzing past my window, I was holding back little tears of contentment.

Frustration

The next few weeks after leaving the hospital, blended into months. I finished taking the corticosteroids and I had 4 injections of steroids into my ear, each a week apart. Yet there was still no improvement in my condition.

Friends and family were keen to ask me how I was feeling. They saw that I was out of hospital and assumed that everything was OK. But it wasn’t. I was struggling through every day with deafness and other related issues: sensitivity to noise, light-headedness, tinnitus and the ever-present pressure in my ear and head. I almost felt like I was letting people down; telling them that I was not feeling any better. I looked like my usual self but was feeling awful. There was no visual evidence of the discomfort and frustration I was feeling. My problem was completely invisible. If I had a visible scar, maybe people would be able to empathize with my situation a little easier. I wanted to tell them something positive, and I didn’t want to upset anyone, by responding honestly. I didn’t feel any better. Nothing had changed since the day in the auditorium when this all began.

Everyone seemed to have a story about an ear problem. There were stories about ear infections and tinnitus, and about ears feeling clogged when flying. Many people also turned into specialists; asking me if I had recently been swimming or if I had been on an aeroplane? Did the hospital specialists check for ear wax? People didn’t really know what to say to me. I know that they wanted to sound positive, helpful, sympathetic…I did appreciate their support. People just wanted to show they were thinking of me. I would have done the same if one of my friends or family were in my position. I would have wanted to help solve the mystery and for everything to be better. I didn’t want to sound negative, but I didn’t want to lie to people. Sometimes the truth is difficult to share, and it can also be difficult for others to hear; especially when they have feelings invested in the person sharing the news.

I couldn’t go to work. Being an Early Years teacher demands having energy; being able to tolerate high levels of noise, being able to go up and down stairs without feeling lightheaded, being able to hear in background noise, being able to sing and dance without feeling dizzy. The children in my class were only 4 years old. They needed a teacher who could give them the care and attention they deserved. I missed being in a classroom. I only briefly met my new class, who I instantly loved, and who I felt like I’d abandoned. It was so frustrating. I could walk and talk and breathe and see. I looked the same. But to be able to do my job properly I needed to feel better.

I was having meetings every two weeks with my doctor to inform her of any updates. She also seemed to be getting frustrated with the absence of any change in my situation. Every time I met with her I would tell her that I felt the same. One time she explained to me that it was difficult for her also. Usually, she can give her patients some form of hope. Usually, she can give her patients a diagnosis, or prescribe some medication, and then with time, symptoms will improve. Usually, people show some form of recovery and this gives them hope. However, in my case, there had been no change in 10, 11, 12 weeks, and she knew it was difficult for me. She told me to take comfort in the knowledge that my hearing loss wasn’t a result of a more sinister problem, such as stroke or a tumour.

There was still hope. 12 weeks after the day of my sudden hearing loss, I went to see a specialist at the hospital. He told me that sometimes hearing can come back spontaneously within the first 6 months after the occurrence of hearing loss. I was told to wait and see if my hearing would improve naturally. I would go back to see the specialist in 3 months, and if there were no changes in my condition, they said a hearing aid might help me.