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.

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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 headteachers 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 🙂

More alternative therapy: Part 2 – A scattering of needles

…As soon as he entered the room, the practitioner began to work on my neck. It felt like he was using his fists; starting from my collar bone and then rubbing them up my neck with vigorous force. My skin began to burn from the friction, and the procedure felt like it would have been more relaxing and pleasant, had it been performed with massage oil. After about 10 minutes of the neck burning massage, the practitioner began to slowly push down on my head, encouraging it to bend towards each shoulder. I couldn’t believe how far I was able to stretch. It was as though the stinging massage had loosened all the tension in my neck.

The practitioner then walked away from the massage table and when he reapproached I could see him putting on some blue latex surgical gloves. He asked me to open my mouth. He then inserted his index finger inside my mouth and started to press gently inside my cheek. His thumb pressed lightly through the outside of my cheek, so that it met with his index finger. He massaged using a pressing motion, and in small circular movements. He mumbled something about the temporomandibular joint (TMJ). This massage lasted a few minutes and was repeated on the other side of my face.

Again the practitioner moved away from where I was lying. This time he exited the room. After a few minutes he returned, and whilst leaning over me he announced, in a matter-of-fact tone, “Acupuncture”. Oh, I wasn’t expecting that! I had never had acupuncture before. I asked if it was going to hurt. He assured me that it wouldn’t. He swiftly placed the needles in different points around my jaw, forehead, and the top of my head and my collarbone. The needles felt like they were being elegantly scattered in to place. The majority of the needles glided into my skin, with ease, and caused only a slight sensation of my skin being pricked. But, the insertion of a needle in the part of my jaw below my ear, where it forms an angle to make my chin, caused immediate and intense pain. A tender soreness radiated deep into my jaw. I was in pain, I exclaimed, and alerted the practitioner to the offending needle. He responded saying, “Oh, yes that one will hurt!” I was asked to continue to lie still for 20 minutes. I heard the sound of the door close as the practitioner left the room, and I was left listening to the soft jazz and wondering how many needles were in my face, and what I looked like.

After about 10 minutes a woman, who I hadn’t yet met, entered the room. She greeted me with a jolly sounding, “Hola” and told me as she was turning the needles slightly, that she was there to do just that. A few seconds later she left the room. I was again left lying motionless on the massage table, listening to the soft jazz.

Another 10 minutes passed and again the door opened. I could see from my lying position that it was the same woman who had turned the needles, who was now entering the room. She swiftly collected the needles from my face and neck, with the ease in which they had been placed.

This new practitioner was a comical woman. She told me that she was a nutritionist and she spoke to me about my diet. She presented me with a list of suggestions for a healthy diet, that she told me she had spent time translating from Spanish to English, and to excuse any unusual translations; blaming Google Translate for such errors. The focus of the diet was on eliminating animal products, dairy, and sugar. I was amused by the Spanish theme of the diet. I was allowed a typical ‘Spanish breakfast’ consisting of toasted soda bread with crushed tomato and olive oil; this was something I assumed the Spanish clients would refuse to abstain from. Chorizo and sugary products from the Pastelería (bakery) were ‘prohibited’. I started to think about the foods I liked. Hmm, there was no mention of Marmite or PG Tips tea…There was also a list of suggestions for dietary supplements including Vitamin C powder, Omega 3, a B vitamin complex and Magnesium.

Next I was asked again to sit opposite the mirror and she began to explain some exercises, which I would need to carry out three times a day. She laughed each time before beginning her explanation and demonstration. Maybe she was unsure of her translation. Maybe she found it humorous to watch our reflections as we performed the exercises together, which involved contorting our faces into different shapes, putting our tongues in different positions, and making clicking sounds with our tongues on the roof of our mouths.  These exercises I would most definitely be preforming at home, in private!

And so my experience of the craniofacial rehabilitation concluded.  I liked the holistic approach. I would continue to attend appointments every week in the hope that some of the pressure in my ear could be reduced…

More alternative therapy: Part 1 – skin popping included!

My consultation with the maxillofacial doctor, which by this time was 6 weeks previous, had concluded with her recommending some treatments for me to try. One of her recommendations was that I embark upon some craniofacial rehabilitation. This is a form of physiotherapy that can help temporomandibular (TMJ) (jaw joint) disorders, by using a variety of methods; understanding the relationship between the neck and shoulders, and the head and the TMJ.

This would be yet another alternative method I would try, to see if the pressure in my ear could be reduced, by addressing issues with my jaw. At this point in my story I was continuing to see my chiropractor, who was also doing jaw adjustments. I was also wearing my new night guard to help with my teeth clenching and grinding, whilst sleeping. Maybe this new therapy would complement the other things I was trying.

I had come to terms with the fact that the hearing in my left ear wasn’t going to return, and I was developing strategies to manage my life with unilateral hearing. However, I wasn’t prepared to accept that I would have to live the rest of my life with the constant discomfort of the feeling of pressure in my ears. The doctors had been unable to provide me with any medical-based relief, and so there was nothing to lose by seeking alternative help.

I arrived at the clinic on a Tuesday morning in May, and quickly found myself sitting in yet another waiting room. It was early in the day and I was the first person waiting. The clinic had a clean feel to it. There where white walls, and a light coloured wooden floor. In front of where I was sitting was a light wooden coffee table, with a white candle placed in the middle. Also on the table was a small metal tray in which sat an ornament of a Buddha, alongside some incense sticks. On the wall opposite me was a circular logo, with an outline of a head pictured sideways-on. Above the head, were the words ‘Integrative Craniofacial therapy’. To the right of me, hung a small print of one of Picasso’s paintings; adding a slight touch of lively colour to the otherwise sterile-white wall. Around the room were a variety of different sized leafy pot plants; some small, and perched on top of shelves, and some bigger and nestling into the corners of the building. The feeling of serenity was complete when the music speakers were turned on; initiating the low and warm tones of Nina Simone singing jazz, that floated around the clinic.

First I met the main specialist. I immediately recognized him from the website, and I believe it was he who had originally set up the practice. He asked lots of questions. This initial meeting was conducted at swift pace and with seemingly professional efficiency. He asked me questions about my general health, my diet, whether I was stressed, and about my sleeping patterns. He didn’t seem surprised when I told him about my sudden hearing loss. He scribbled down notes in scrawled handwriting. He felt around my neck and jaw and asked me to open and close my mouth a few times. He said I have issues with my TMJ muscle. He then took me to the room adjacent, where I met another practitioner, this time a woman.

The woman spoke in English and gave me a lot of explanation about what my treatment would consist of. She explained how first she would work on my lower back, and then gradually work upwards towards my neck and face. She began by massaging outwards from my spine. I sat in my underwear, on the edge of a massage table in front of a mirror. I watched as she worked her way up to between my shoulder blades. The therapist was very friendly and seemed to be using her time with me as an opportunity to practise her English speaking skills; which I was very happy about, as it meant that I was able to relax and forget any language-based stress. Whilst I was gazing into the mirror, focusing on nothing in particular, she told me she could see (without touching me) that there was inflammation on the left side of my jaw. I glanced up and looked at my face in the mirror. I could see the inflammation too. I had seen it in my reflection since the day I’d lost my hearing. Yet I couldn’t recall if there had been swelling there before my hearing loss.

I was then asked to lie down on my stomach, on the massage table. She started pulling at my skin around the base of my spine. As she pulled there was an occasional loud popping sound. This was a new experience that no amount of massages enjoyed and endured whilst living in Thailand could have prepared me for. It was quite a painful and uncomfortable experience, yet was also quite satisfying – like tension was being forced away from my back with every pop. The practitioner explained that she was releasing my skin from the bone.

I asked the practitioner if she’d ever seen anyone who’d suddenly lost their hearing. She said she had. She said she had seen people with all sorts of problems: problems with facial muscles, problems with senses, neck problems etc… The walls around the small massage room were decorated with posters. The posters were diagrams of the mouth and teeth. The posters showed the connection between the ears, nose and throat. The posters showed how issues with the neck can affect other parts of the body and face. Hmm, these were all familiar issues.

I then asked the practitioner more directly if she thought my jaw problems could be connected to my hearing loss. She immediately replied, “Yes”, as though it was a question that didn’t require any thinking time to answer. She then quickly added, “But obviously I don’t know what’s going on inside the ear…” When I told her that my MRI scan results had been normal, that there was no virus, that my blood tests had been normal, and that the doctors couldn’t explain my hearing loss, she said, “Well, if they don’t know, then 99 percent I think it could be connected to your jaw.” She also mentioned some other possible attributing factors including stress, serotonin levels, and hormones.

After about half an hour of massage, the woman left the room and the original guy returned…

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…

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!

My first run – Starting to feel normal again

Six months after experiencing sudden sensorineural hearing loss in my left ear I decided I was ready to go for a run. My body had been through a lot during the past few months. The hearing loss had been a shock. I had felt frightened and helpless. My body had felt like a vessel used for experimentation; exploring the effects of different types of drugs on my condition: anti-inflammatories, nasal sprays, intravenous steroids, intravenous anti-viral medication, injections of steroids through my ear drum and different types of vasodilators. My body had felt delicate and vulnerable; I had experienced side effects of weakness, loss of weight, low blood pressure, tiredness and dizziness. But enough was enough; I wanted to start to feel more normal again. I love running. Running always makes me feel happy. It makes me feel strong. It is also a time where I can completely forget about any worries or unwanted thoughts. I wanted to switch off from the recent past.

I had asked my chiropractor, the week before, as to whether he would recommend that I start running again. I remembered that, when I first met him, nearly 4 months ago, he had asked about what kind of exercise I did. Due to the problems I was having with my neck, he had encouraged me to take a rest from running until my neck was feeling better. At this time, I was also dizzy and taking medicine that my body was struggling with, and so didn’t feel strong enough to able to go running anyway. Yet now I wasn’t too dizzy and I wanted to feel stronger. I missed running and thought it might help cheer me up, and help me on my road to recovery. It was also another thing that I would be able to do for the first time with unilateral hearing – another experience to say I have tried, since living with single-sided deafness.

I waited for a few days after visiting my chiropractor, to go for my run. I wanted my first run to be on a sunny day. I wanted my first run to be a good run. I wanted to wake up, see the sunshine, and be spurred on by the beautiful Madrid weather, to go outside and have a go! I did exactly that. I had checked the weather forecast beforehand and it was going to be a nice day. I got out of bed when my boyfriend had left for work, and I rushed to the window. The sun was shining optimistically in the sky, and I decided today was the day.

Putting on my running clothes, I noticed how my body had changed since I had last worn them in the summer before I lost my hearing. My legs were thinner and my bottom was flatter and my stomach looked small and weak.

I walked briskly for 15 minutes to the nearby running track. It is difficult to run on the streets of Madrid as there are always lots of people around, even during the daytime. I didn’t want to feel vulnerable whilst stuck in the traffic of people. I enjoyed the sun, and breathed the air; taking strong breaths to fill my lungs. I find that when I go running, I realize what a small part of my lungs I actually use during everyday activity. Shallow breathing is a habit of mine, as I am sure it is for many people. It’s almost like we forget to breathe, and it’s actually quite an effort to fill your lungs with every breath, when you’re not used to doing it.

When I got to the track, I was surprised at how many people were there enjoying their morning exercise. I immediately started to run; making sure I was moving slowly and focusing on keeping my shoulders slightly back and good posture. I was listening to a storytelling podcast though my running earphones. I didn’t pay attention to the noise of the tinnitus in my ear that resounds with increased stubbornness when the sounds of the outside world are blocked by ear phones. I didn’t pay attention to the fact that I could only hear the story in my right ear. I was purely happy. I was running in the sunshine, enjoying listening to stories. I was feeling normal again.

The only time I thought about my hearing loss and the pressure and tinnitus in my ear, was when I actually realized that I hadn’t thought of these problems.  So the only time I thought about these issues was actually thinking about the absence of thinking of them! Exercise is well known to be a distraction from life’s worries. This was my proof. My first time running with unilateral hearing was a success.

I sent my sister a message later that day, telling her about my achievement. She replied and wrote that she was so glad that I had been for a run and that I was ‘getting my Carlyness back’ 🙂