Action On Hearing Loss Fundraising campaign

Hello blogging friends!

I am taking another short pause from my story to share something with you all that I am so happy about.

A few months ago I was contacted by the UK charity Action On Hearing Loss. They wanted to know if I would be happy for them to use my sudden hearing loss story as part of a fundraising campaign. Of course I say ‘yes’! I spoke to them about my experiences and they asked me lots of questions about how I had lost my hearing and how this has changed my life. During the last few months, they have been writing a letter about me and my experiences, and also outlining the type of research the money raised will fund.

The aim of the project is to develop a new way of getting drugs into the inner ear more effectively than the current method of injection through the eardrum. With the injection, very little of the drug gets through, and the treatment is rarely successful. This is because the inner ear is very difficult to reach. The project is developing a ‘magnetic injection’, whereby tiny iron particles can be used as carriers to deliver drugs to where they are needed. The team has developed a system which uses a magnetic field to ‘inject’ drug-carrying particles across inner ear membranes and into parts of the ear that are not normally accessible.

This could enable effective treatment of people with sudden hearing loss, as well as other types of hearing loss, tinnitus and vertigo.

Today the letters for the research appeal are being mailed to the charities supporters!

Here is a link to the webpage for online donations for you to take a look at:

https://www.actiononhearingloss.org.uk/donate/sudden-hearing-loss-treatments.aspx

I am so happy that I have been able to get involved with something that means so much to me. I really hope that enough money will be raised, and hopefully one day a treatment will be available for people who experience sudden hearing loss 🙂

Dentist mission: part 2

… A few days after my first Spanish dentist experience, I was back in the brown waiting room, waiting to be seen by the little dentist.

When I entered the dentist’s room, he greeted me again with a muffle. His younger assistant was also present, and looked keen to begin part 2 of my dentist journey. I had thought that maybe my mouth guard would be ready, but I was told they needed to take some more measurements before making it, in order to make sure it would fit my mouth properly.

The measurements were extensive. First I had to sit with a small cotton roll between my front teeth, and I was told not to close my mouth. I didn’t quite understand why I was doing this – something to do with my jaw muscles. I was accustomed to doing things by now, just because I’d been asked to, blindly obeying specialists’ instructions, unsure of what they were doing or why. I sat for some time with what was basically a small tampon between my teeth! My jaw muscles started to spasm, and my teeth felt like they were shaking.

The dentist melted some small pieces of blue mold in a metal heating basin. The basin was the size of a tissue box, and was filled with what I assumed was water. This blue mold was different to the pink putty which had been used previously to take impressions of my teeth, and was instead a soft plastic-type material with a texture similar to toffee. Imprints of my front teeth and back teeth on both sides were taken one at a time, in three stages. During each stage my translator gave me clumsy instructions in a mixture of American English and Spanish, as to what to do with my mouth. The blue hard gums were placed in my mouth and I had to bite down on them, and then cold water was sprayed from thin tubes into my mouth, followed by cold streams of air; to set the gums in shape. Next came more measurements.

I was asked to open my mouth as wide as possible, and a rectangular metal plate the width of my mouth was forcefully inserted so that it filled the whole of my mouth cavity. Attached to the plate was more gum-type substance, this time a red colour. An imprint of my teeth was made by me biting down onto the gums, and then the metal plate was removed. The next contraption featured stethoscope-style ear plugs that I had to insert into my ears, whilst the dentist moved the attached metal arms of the device around to my forehead. He used a screwdriver to slightly tighten the arms in place. My entire head was encased inside these metal arms. Then came the finale. For the final measurement I had to open wide again and the metal plate was again inserted. The ear buds and head-hugging metal armed contraption was also moved into place. I sat in the chair unable to move my mouth that was full of metal, and with my head imprisoned by the metallic arms. Yet another moment in my story of looking completely ridiculous! The buds were forced tightly into my ears and I bit down on the plate as they pushed it upwards. The dental technician lifted the ear part and the dentist used his screw driver at the same time to tighten all the screws in the device. I couldn’t help but wonder if there was a more comfortable way of taking these measurements, such as using a laser… ‘Ya!’ I heard the dentist say – ‘finished’. I carefully removed the ear part of the facial device and handed it to the dentist, and he took the contraption to the side counter and wrote down all the measurements.

During my time sitting in the dentist chair, the dentist and the technician had been chatting continuously. It seemed like the younger of the two was trying to pursue a conversation about a trip he’d recently been on, whereas the older was intent on explaining the measurement procedures to him, step by step.

Oh, but they hadn’t finished. The doctor was concerned about my jaw. I hadn’t mentioned anything about my jaw to him, or the fact that I had suddenly lost my hearing nearly 8 months ago. They only knew that I was deaf in one ear and that I needed a new night guard. The dentist was explaining and gesturing to the younger, and was pointing to parts of my mouth as he mumbled insistently. I heard the Spanish word, ‘articulación’ – which I thought meant ‘movement’, but when I later translated it, I found it meant ‘joint’. The little dentist spent some time feeling my jaw joints again. He asked me to open and close my mouth, and to move my bottom jaw forwards. He then asked his companion to stand opposite me and I had to smile widely at him as he observed me. I felt a bit like an animal in a zoo, or some kind of unusual specimen to be prodded and observed. I think they were talking about the deviation of my teeth and jaw. I hadn’t previously told them any information about the maxillofacial specialist in the hospital…maybe next time I would tell them more of my story. But at the moment I was impressed with how thorough they were being with their observations. The little dentist seemed interested in finding out more, and in trying to help me. He was obviously extremely knowledgeable in his specialism.

They would send my measurements to the laboratory, so that my night guard could be made. I was to wait for them to call me, and would return in about 10 days to have it fitted. They also wanted to do another x-ray of my jaw, which they described as a cross-section, so they could see what was ‘going on in there’. The dentist shook my hand, taking his mask off to say goodbye, and he gave me a friendly and almost a humble smile.

I ended up returning to the dentist before I received their phone call. About a week after I had been measured for my mouth guard, one of my back teeth broke, of course it was on my left side. It had broken due to my teeth clenching – a clear sign I was in need of the mouth guard. This was also strong evidence to the amount of pressure I must have been putting on the left side of my face.

Let’s see if wearing a night guard helps reduce some of the pressure in my ears…

Dentist mission part 1

I was sitting in a waiting room, waiting for an appointment to get a new night guard for my teeth. The type of mouth guard I needed was similar to the ones that boxers or rugby players wear to protect their teeth. This type of dental guard however is custom made, in order to fit individual mouths comfortably. I had been aware of grinding and clenching my teeth whilst sleeping, for at least 15 years, and had recently been waking up in the middle of the night with my teeth clenched tightly together. It was as though my subconscious was intervening and was now warning me when my teeth were engaged in this habit.

I already owned a mouth guard which I wore on my bottom teeth, and which had been made over 10 years ago, when I lived in England. I had worn this guard on and off for many years. In the past, when I went to the dentist, the only question I was ever asked about the guard was whether or not I had one. Nobody ever asked me how old it was. It had been expensive to have made, and I never thought about getting another one. It was only recently after my consultation with the Maxillofacial doctor; who seemed confounded that I had been using the same guard for over 10 years without having it adjusted, checked or replaced, that I realized perhaps I should get a new one. Of course, our faces change with age, as do or jaws and teeth.

The relationship between teeth grinding and clenching, and problems with the temporomandibular jaw joint (TMJ) causing problems with the ear are well documented. Curious that this connection was never mentioned by any of the many ear specialists I had consulted with. Typical symptoms of a TMJ disorder include ‘hearing loss, an earache, tinnitus, a sense of ear fullness, and vertigo’. Hmm I had experienced all of these, and continued to do so with all except the vertigo. I had even read stories of people who had suffered a hearing loss, and then after wearing a night guard for some months, their hearing had gradually returned. I was not hoping for this kind of miracle, but I did have some optimism that a new night guard could help reduce some of the pressure I was feeling in my ears and my head; this being the most difficult of my symptoms to tolerate.

The dentist surgery was in an old style apartment block. The waiting room felt as though it was probably once someone’s living room, many years ago. The room was square and dark padded sofa chairs lined three of the walls. There were no windows, and the walls were a plain dismal-cream colour. Around the bottom of the walls was dark brown skirting. There was a dark coffee table, situated in the space made between the chairs, with Spanish magazines arranged on top, in three piles. It was simply decorated, with two large framed pictures, one on each chair-lined wall. In the far corner, situated up high, near the entrance was a small box TV playing a Spanish soap opera with subtitles and low volume. As well as the low rumble from the TV, jingly-sounding elevator style music attempted to liven up the atmosphere. The surgery had looked so clean and white on the photos on the website. This definitely did not resemble the sterile and shiny images that had been advertised.

The receptionist called me to her office to speak with her. She had a confident, sociable and easy going attitude. I stumbled my way through the general health questions and she corrected my Spanish a few times, each time smiling with friendliness. She was the kind of person who made me feel like she immediately liked me. Perhaps it was the child-like Spanish I was speaking to her. For this appointment I hadn’t prepared any Spanish phrases or helpful vocabulary. I had become accustomed to meeting new specialists, doctors and receptionists, and the taking of basic details didn’t feel too scary anymore. I then went to sit back in the waiting room.

Shortly I was greeted by the guy with whom I had spoken on the phone, who had given me an appointment within 45 minutes of me phoning. He was younger than me, and spoke to me in a mixture of Spanish and American-sounding English, as he lead me to the dentists room. When I entered, I was met by a small old man, who was wearing a medical face mask, dentist overalls, glasses with magnifying mirrors attached, and whose bald head was covered in age spots. He muffled a greeting through his mask, and I wondered what he looked like under the medical disguise. He resembled a little mole, as he shuffled calmly around the room. He asked me why I was there and whether I had had a ‘ferula’ before. Ferula is the Spanish word for mouth guard – this was my new medical Spanish word of the day. He asked me to perform some jaw movements as he felt around my head and under my jawline. He also examined my teeth. He mumbled constantly into his face mask, directing his speech towards his companion. I could only hear and understand a little of what he was saying. The younger dental technician spoke to me in his broken American English and explained that they would need to do an X-ray to make sure the night guard would fit properly, and then they would be able to do the molds of my teeth. After that, the dentist left the room, and that was the last time I saw him during this appointment. The dental technician took me to a room to have the X-ray. Later he filled my mouth with pink putty to form the molds, chatting happily at me whilst my mouth was unable to move. I would return the following week…

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 trialing 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 traveling 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 to my deaf side. Without the aid I would be clueless to 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 mold correctly inside my ear, and within minutes, the aid would have squeezed its way out, so that it was no longer fitted snugly. This meant that throughout the day, I would keep having to push the mold 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 motor cycle 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 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.

 

Underground scanning

Back to my story…

Two weeks after my consultation with the Maxillofacial doctor, I went for a bone scintigraphy scan. The scan was to be performed in the basement of the hospital. I walked down some red painted steps into a concealed underground hospital corridor. It was a world of large metal pipes and echoes. Since the scan involved radiation, I guess it was to be performed in an isolated area to protect other patients. The first step of the scanning procedure was an injection of radioactive dye. I was then asked to wait in a room with around twenty other people. The room was square, and painted a tired off-white colour. At the entrance to the room were two toilets. There were no posters on the walls. The perimeters of the walls were lined with plastic chairs. In one corner was a table covered with a plastic table cloth and large bottles of water and plastic cups. I was told to drink at least 5 cups of water, and to use the toilet as much as I needed to. I had to wait for the dye to travel in my blood stream around my body. I watched as people’s names were called. They were asked to go to the toilet, and then they would go out of the door of the waiting room for their scans. As time went on I watched as people started to become agitated with the long wait. One old man started to pace back and forth, leaning heavily on his walking stick. Another man positioned himself near the door, making himself very visible; seemingly hopeful to be the next person called. I waited for 5 hours.

The scan took about 20 minutes. The machine was white, and resembled an MRI scanner. At one end of the machine, there was a ring doughnut-shaped compartment. Positioned at the entrance to the centre of the doughnut hole, was a long examination table that had a groove that ran through the middle of it. I was asked to lie down on the table. My body slotted into the groove. My head was supported with a pillow, and another pillow was placed under my knees. I was then wrapped up in a blanket, with my arms hugging my body, and a belt was fastened around me. I imagined that my blanket-swaddled body resembled a snug fitting battery in a remote control battery compartment. The technologist positioned another part of the machine around my head, and then she went into a small room behind a glass screen and turned on the machine. The robotic arms of the machine rotated slowly around my head, making loud clicking sounds. Next the battery compartment started to move like a conveyor belt towards the entrance to the doughnut. I was transported inside the doughnut. I looked up and saw the top of the machine was only a few inches from my head. I focused my stare on a small area of the machine above my head, so as not to move, and to prevent my thoughts from drifting to contemplation of my confinement. More loud clicks followed, and more images were taken.

About a week after I had the scan, I met again with the new ENT (Ears Nose and Throat) specialist. He said he was happy to see me looking well, and asked if I was back at work yet. In my previous consultation he had been concerned about my well-being. I told him I hadn’t yet returned to work. He said I would have to try soon, but he was worried about me being in an environment with lots of noise, as he knew I’d find it difficult.

Then he changed the subject of discussion. He asked about my breathing; in particular whether I had any difficulties due to my deviated septum. He asked whether I breathe through my nose or my mouth. I was asked to sit in a big black chair opposite his desk. He then performed a Fiberoptic Nasopharyngoscopy. This is an imaging technique, using  a long thin black flexible wire with a light on the end, that is inserted into the nose. It can allow visualization of the nasal cavity, septum, and other structures. The specialist slowly fed the viewing tube down my good (right) nostril, until I could feel it brushing past my throat. My eyes started to water involuntarily. I remained in rigid stillness. This was a procedure that one of the other specialists had done before, so I knew the level and type of discomfort I would experience. Then he removed the tube and started to insert it into my deviated (left) nostril. This I had never had done before. He got as far as the top of my nostril; the furthest area you can touch with your finger. Then he stopped. He said the nostril was completely blocked due to deviation of my septum. But then, to my bewilderment, he continued to feed the tube into my nose; forcing it further down towards my throat. I was in extreme discomfort. My eyes continued to produce uncontrollable tears that streamed down my face. He carefully removed the tube. My body was shaking. The specialist told me that my left nostril was completely blocked. He said that I couldn’t breathe through this nostril – this I was obviously something I was aware of.

I then sat down again at his desk, more relaxed now, and he asked if I wanted to have an operation to correct my septum; that would help me breathe better. He said I would probably need the operation in the future anyway. I said I’d like to wait for the results of the jaw scan first, and then if everyone was OK with that, then I’d prefer to have the operation sooner rather than later. I thought it would be better to have an operation in the present, rather than in old age. Also, I’d like to be able to breathe better, especially when I’m trying to sleep. He said he thought this was a good plan. He said that correcting my breathing should help to make me feel more comfortable, and could possibly help with some of the stuffiness I was feeling in the left side of my head, since my hearing loss. I would meet him again in a month.

Two weeks after the bone scintigraphy I was back at the hospital for a consultation with a maxillofacial (jaw) specialist to get my results of the scan. I was going to find out whether I had Mandibular Condylar Hyperplasia (a rare bone disease that causes asymmetry of the face amongst other things). My boyfriend accompanied me for this appointment, as I was feeling nervous. The specialist explained that the results of the scan showed that I didn’t have the rare bone disease…Breathe…She said that it did however show deviation of my jaw. I was then led to the adjacent room where I sat in a dentist-style chair and she examined my jaw; asking me to open and close my mouth. She told me there was a problem with my jaw muscle. My boyfriend asked whether my problems with my ear could be related to my jaw issues. She answered discernibly carefully, saying that ‘the ear pressure could be associated with the jaw’. She wrote down recommendations of treatment for my jaw problems on a piece of paper for me:

  1. Go to a dentist and have a new night guard made. This would protect my teeth and jaw muscles from night-time clenching.
  2. Try taking Robaxisal (a muscle relaxant) for 5-10 day cycles. The specialist felt my jaw was probably in spasm. This medicine could help release some of the tension.
  3. Seek treatment from a specialist in craniofacial rehabilitation  – this is a type of physiotherapy for the jaw.

…Next stop the dentist…

Deaf Awareness Week

Hello everyone. This week is Deaf Awareness week, and today I am taking a break from my story.

I’d like to introduce you to Richard over at https://2bottlesofmilk.com/.

As well as writing about being a dad of two, Richard also writes about his son Leo’s hearing impairment. Leo was born with hearing loss, and Richard’s blog shows the fitting of Leo’s first hearing aids when he was a baby, and documents Leo’s Cochlear Implant Journey. Richard and his family are raising hearing loss awareness by posting a variety of guest blog posts throughout the week, from people who have experiences of different types of hearing loss.

Please take some time to have a look at his site throughout the week!

Below is my guest post that will be featured on Richard’s blog this Thursday. My post gives an overview of my experience of Sudden Sensorineural Hearing loss (SSHL)

Nine months ago I was sitting in a school auditorium, listening to a guest speaker giving a presentation. I am a teacher of Early Years children, and this was part of the school training sessions, a week before the start of the new school year. I lifted my head up from writing some notes, and out of nowhere came a loud screeching sound that filled my head with pressure. The sound grew quieter into a dull ringing, but the pressure continued and I was soon feeling light-headed and disoriented. This is how I lost the hearing in my left ear. There was no accident or known infection or virus that caused it. There was nothing inside my ear blocking the sound. It was not a gradual deterioration. My hearing just disappeared. I had experienced something called sudden sensorineural hearing loss.

The treatment that followed was anti-inflammatories and nasal sprays prescribed by my doctor. When these didn’t help, I was referred to a specialist, who told me to go to the hospital where I received a week-long course or intravenous corticosteroids and anti-viral medication. I continued taking the corticosteroids for another four weeks after leaving the hospital. I also received four injections of steroids directly into my ear, each a week apart. I went for an MRI scan which ruled out a tumour as the cause of my hearing loss; which of course I was relieved by. Yet nobody was able to find a cause of the loss of my hearing. Despite the medication and treatments I received, there was no improvement in my condition. I am now severely deaf in my left ear.

The obvious problem with being deaf in one ear is that I can’t hear. I have read about other people’s stories of sudden hearing loss and it seems that everybody’s experiences are unique. Many people lose their hearing in similar ways such as hearing a pop in their ear or feeling a fullness sensation in their head accompanied by pressure. Yet the after-effects can differ a lot. For me, it is not the actual deafness that is the main issue I am dealing with, but rather the other ‘hidden extras’ that come with my condition. Of course, I get frustrated by not being able to hear well. How many times can I ask my boyfriend what he has just said to me? How many times can you ask someone to repeat themselves, before they decide that what they were saying ‘doesn’t matter’? But I am facing more challenging issues than just having unilateral hearing.

With only one hearing ear, I have no idea where sound is coming from. I might hear some music or a noise, but I won’t know which way to look to see what has produced the sound. Sound localization is a skill enabled by having two working ears, not one. I find it difficult to filter out background noise. When I am in a place with sounds such as traffic, people talking or music, and somebody tries to speak to me, I cannot hear them unless they are standing very close to me on my hearing side. Another issue I am having is that I developed a sensitivity to sound. I find loud noises painful and with loud noises, my head fills with pressure. The kitchen is an orchestra of cutting sounds: water running and clinking as it splashes in the metal sink, kitchen pots and pans clanging together, the ping of the microwave and the beeping of the washing machine, and the oven fan that blends the other sounds together; making a mass of pressure in my ears. Another uncomfortable part of my day is when I open the main door to the block of apartments where I live, and am immediately faced with city sounds of traffic and people. Eating crisps, or anything crunchy such as crusty bread, sounds so loud and distorted in my head. This was originally something I found really difficult to cope with, but seems to be getting better with familiarity.

One of the most upsetting things is that I have realized that many of the things I love involve noise. I love music and listening to podcasts on my IPod. Now I no longer can enjoy music how I used to. I have programmed my earphones to filter all the sounds from music into mono so that it ensures I don’t lose the sound of the drums or vocals when using only one headphone. However, this obviously means that all the sound goes into my right ear, which is already dealing with enough right now, and soon becomes uncomfortable with the intensity of the noise.

I regularly feel exhausted. I’m not sure why. Perhaps it’s my body trying to adapt and cope with feeling off balance and sensitive to my surroundings. Everyday sounds are tiring. With tiredness comes the difficulty of concentrating on individual sounds, which in turn makes the process of hearing conversation difficult. I also have continuous tinnitus in my deaf ear.  For me, my tinnitus is rarely just one constant sound, but rather a mixture. Some common sounds for me are: the sounds of swimming with my head underwater, bells, ringing and whooshing – like the sound from those corrugated plastic tubes that children swing in circles to make a noise.  During the daytime I am often able to disconnect from my tinnitus, as there are usually other ‘real’ sounds to occupy my hearing. However, when I am lying in bed trying to sleep I hear only my tinnitus. Every day at this moment, I wish for silence.

There have been difficult times where I have lost my confidence or when I’ve experienced moments of sadness and the feeling of loss. I sometimes think it would be easier to have been deaf in one ear all my life, than for it just to happen to me. I know how great music can sound in stereo. I know how easy it can be to talk with people and hear their responses over background noise. I know how it feels to enjoy the loudness of the cinema or to experience the force of live music at a festival bouncing through your body.  I also know there are people going through much more difficult and scary things. Yet it is only human nature to feel sad. I have felt angry at my body for letting me down. I lost a part of me that played a big role in enabling me to interact with the world. I am starting to deal with it. I will keep trying every day, to tackle the new challenges that come with my hearing loss. Eventually I want to be able to embrace my hearing loss, and not let it upset me, rather for me to take control. I want to enjoy the hearing that I do have and feel grateful for it.

Playing the game: another hospital appointment

Going to a hospital consultation, in a country where I only speak a little of the language, is not dissimilar to my time spent as a child playing adventure games such as Monkey Island, on my old Amiga computer. Yet instead of following the misfortunes of the hapless Guybrush Threepwood as he struggles to become the most infamous pirate in the Caribbean, the focus is on me, an English girl; half-deaf and with limited Spanish, trying to fathom her way around a Spanish hospital system. Yeah, it doesn’t sound as interesting, and it’s not, but it presents a puzzle in itself nonetheless. As in such adventure games there are questions, feelings of apprehension, and puzzles that must be solved before progressing with the story and moving forward in the game.

My game begins with the intense feeling of nervousness whilst sitting in the waiting room. I sit asking myself various questions: Will the specialist speak English? Will they listen to my Spanish and take me seriously, even though I’m obviously not fluent? Will they slow their speech down so I can understand some of the words? Will they be OK with writing down the names of any necessary tests, so that I can go home and Google them? Will I even hear them when they call my name!  My main hope is that they will be patient with me.

The next part of the adventure is the actual consultation. If I am not fortunate enough to meet a specialist who speaks English, I feel the difficulty level increase immediately, and uneasiness starts to claw at me. Trying to make sense of what a specialist is saying, involves me grasping at the words of which I know the meaning of, and putting them together as quickly as I can. Sometimes I find myself listening and trying to concentrate so hard, that I actually end up not concentrating at all. Sometimes I succeed in listening carefully and I manage to understand some words. However, in the time it takes me to make sense of the words, I end up missing the rest of what has been said. On occasions I am handed papers and may be told to take them to another department or area of the hospital, or to use them to inform another member of staff as to the nature of a follow up appointment. The next level follows my journey as I walk around the hospital following signs, and then coming to the realization that I have no idea where I’m going, or why I’m even walking around clutching my paperwork in the first place!

Four weeks after my appointment with the new ENT specialist, I went to the hospital for my referral with the maxillofacial doctor. The upper jaw is referred to as the ‘maxilla’, and the type of doctor I would be seeing, specializes in treating problems related to the hard and soft tissues of the face, mouth, and jaws. I went to the hospital by myself. As usual, my game began with me sitting and waiting anxiously in the waiting room. A mixture of questions were eagerly pushing themselves forward; fighting to be at the forefront of my mind. I scanned the faces in the room. There were people here of all ages. I had found myself sat next to an old man, who kept coughing loudly into a crumpled handkerchief. Whilst battling to ignore the interrogation of persistent questions in my mind, I couldn’t help but glance at a few individuals around me; studying their faces, and wondering why they were here. I’d focus for a while on someone’s features; looking at the shape of their jaw, and assessing the symmetry of their face, until I felt they had sensed my stare, and were about to look back at me. I’d then quickly move my eyes away from my subject.

My name was called, and I walked into a small room. Immediately the specialist started speaking in Spanish. Difficulty level up! I started to answer her questions, and I apologized that my Spanish wasn’t good. She reassured me by saying it was OK. The doctor had a young face, dark hair and radiated compassion. She listened to me as I explained how I had suddenly lost my hearing. She was writing everything down. Then she examined my jaw. She asked me to open my mouth as wide as possible and she felt the joint. She then asked me to close it. I repeated this a few times and she asked if I had any pain in the joints. She placed a tiny piece of card with measurements on, next to my front teeth, and told me my teeth were 3mm to the left, off centre. Then she told me that I was going to do a test. If the results of the test were negative, the treatment would be physiotherapy and wearing a night-time mouth guard. But, if the test showed that I have…then…Oh dear, my skills of following the Spanish conversation were dwindling. I had missed some important information. I told her I didn’t quite understand. She told me not to worry, and the main thing was that first I would need to do the test. I asked her to write down the name of the test and condition she was referring to, so I would be able to research it later at home. Then I was handed some papers and told to go to the receptionist.

Next I went around the corner to the receptionist. As she was speaking to me there was also another woman in the small room, speaking very loudly on the phone. I couldn’t hear my next instructions.  I apologized to the receptionist and said that I didn’t understand and that I couldn’t hear very well. She kindly accompanied me out of the door, handed me some more papers, and directed me to take them to a window down the passage. I thanked her.

Next level. I then walked forwards as far as I could go – which is the direction I was given, and wandered around for a bit. Then it hit me, the moment of realization that I didn’t know what I was doing or where I was supposed to go, or why! I spoke to a nurse who was talking to another nurse in the corridor. She directed me and told me I needed to get a ticket and then go to a window. I walked again in the direction she told me, but didn’t find a ticket machine. Hmm puzzling…I spoke to a man who was sitting at the Information desk in the entrance, and he printed me a ticket. Oh, there wasn’t a ticket machine – this man was in charge of tickets! Then he pointed to the first window and told me I was next. Next for what, I wasn’t sure! I handed the woman behind the glass screen my papers, and she was very patient as she spoke to me. I had to put my ear into the small opening of the glass, so I could hear some of what she was saying. I managed to make appointments for the test and also a follow up appointment. Then I went back to the receptionist in the maxillofacial area, and showed her my papers. She checked them. She seemed happy with my accomplishments and we said our goodbyes.

When I returned home I Googled the words the doctor had written down for me. The ‘gammagrafíatest was a ‘bone scintigraphy‘.  I would be having an injection of a dye of radioactive material. This dye would then travel around my body and emit radiation. Then a camera would take pictures of how much of the dye accumulated in my jaw bones. It was a test to rule out a condition called ‘condylar hyperplasia‘ which is a rare bone disease that affects the jaw bone, and causes asymmetry in the jaw amongst other things.

Anyway…Game over, for this day at least!