Sounds of Madrid

There are days where my unilateral hearing can make me feel so vulnerable. Going outside can be such a challenge, and one that I have to mentally prepare myself for every day. I live in a city, and as soon as I open the apartment block door, I walk out into a mess of noise. Loud deep roars of traffic and the chatter of people forces me into a bubble of isolation. When I am surrounded by sound I cannot sense when there is something approaching my deaf side. I do not realize when someone is walking next to me, or if a bike or car is about to pass me by. When there are background noises, it is difficult for me to focus on conversation; I can’t hear individual sounds clearly, and my ear and head fill with pressure from the sounds, which also adds to the difficulty in understanding speech. If I am outside by myself, I try to keep my deaf ear to the wall, or next to the traffic, so that my good ear has a better chance at hearing noises of significance. When I’m outside with my boyfriend or friends, I have to keep them on my hearing side, and find myself constantly looking at them, to check if they have said something to me.

Traveling on the metro is uncomfortable. The loudness of the train approaching and the screech as it nears the platform can be almost unbearable. Once on the train, there is a bell sound and an announcement of each stop. This bell can be piercingly loud. Before arriving to a station, a recorded announcement says: “Próxima estación [name], correspondencia con línea [number]”: “Next station [name], transfer with line [number]”. Some metro lines have announcements to mind the gap between the train and the platform. Some trains have a whistle sound when the doors close. The metro is a challenging bombardment of sounds. I worry when I’m traveling alone that people might talk to me, and I won’t be able to hear them, or even worse, not even realize they are speaking to me, if they are on my deaf side. They don’t know I can’t hear them. I always worry about seeming rude if I don’t respond to people.

Madrid is a city that is bursting with the music of performers and entertainers. Every part of the city has its own soundtrack. People hop on and off of metro trains; wheeling their portable amplifiers, and various instruments: panpipes, guitars, violins, even miniature pianos. In metro stations, and in fact anywhere in the city, you might encounter a man playing his violin to the soundtrack of Titanic. You might encounter someone playing drums, made of pots and pans or other recycled materials, to a fast backing track beat. You might encounter another violinist, this time without a backing track, and passionately playing a well-known piece of classical music. You might encounter guitarists strumming guitars wildly and singing with raw passion. When walking into town, you can hear a Spanish guy sitting on the side of the street playing his guitar, singing Bob Marley songs in his own unique style; short high-pitched staccato sounds.

This intrinsic creativity, that is present in every part of Madrid, is enchanting. But it is also something that now presents me with a challenge. Now I am trying to enjoy the sounds of Madrid again. Now I am trying not to focus on the tinnitus that the loud sounds of music can bring, and not to focus on the perpetual worry of missing a strangers words. Instead I want to focus on learning to enjoy this wonderfully noisy city that I live, and that I am trying to love again.

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The first time… Part 2: being brave and feeling proud

When I first experienced my hearing loss, I couldn’t contemplate doing normal things such as going to a bar; which is a big part of the culture of Spain, where I live. I remember walking around the city, watching people spilling out of bars chatting sociably, and wondering if I would ever be able to feel comfortable again in this kind of animated environment; alive with noise. Then one day my best friend invited me to go to a bar where she was exhibiting some of her photos. I didn’t want to say no. I didn’t want to let her down. I wanted to see her, and her photos. So, the first time I went to a bar, with unilateral hearing, was to see my friend’s exhibition. Of course it was going to be noisy, and I was mentally prepared for this. When we arrived, I immediately submerged myself in the sounds of vibrant conversation.  I managed to communicate with everyone and listened to them by tilting my head and making sure my good ear was facing them. Although it was exhausting and my tinnitus was ringing aggressively, I was really proud of myself for confronting such a challenging situation.

The first time I went, with unilateral hearing, for a haircut, I was so nervous. I knew the salon would be noisy and I knew the hairdresser would want to chat with me. I didn’t want her to think I was being rude if I failed to respond to her during conversation. So when I was sat on the chair explaining to her what I’d like to have done with my hair, I also told her that I was deaf in my left ear. She barely had a response, apart from saying “OK” and giving me a smile.  As she was cutting my hair she sometimes spoke to me on my deaf side. When she was blow-drying my hair, it was impossible for me to hear her, and she continued chatting happily. I could see her mouth moving in the mirror, but didn’t know how to answer her. Yet she didn’t seem to be phased. I guess hairdressers see so many different people every day, with so many issues, and learn to take it in their stride.

I love eating out in restaurants; in fact it’s one of my favourite things. If I go to eat in a restaurant however, there are only a few tables that are accommodating to my needs. The best table for me is one that is in a corner, with a chair situated in a position that will allow my deaf ear to face a wall, and my good ear to face the direction of any possible conversation. The worst positions are: at a table in the middle of a room; sitting with my back to where the waiter will approach; and anywhere where my deaf ear is directed towards the waiter – This will result in me jumping up in my chair in surprise as I turn to unwittingly see a waiter standing next to me, who I hadn’t sensed was there.  The first time I went for a meal in a restaurant, with my unilateral hearing, was when my boyfriend’s sister came to visit. We went to a Thai restaurant on a weekday, and earlier than the average Spanish person eats. The restaurant was almost empty and I managed to get a good position at a table. Although there was very little noise from people talking, I found the Thai music that was being played, a distraction. My good ear struggled to filter out the music and it was difficult to focus on conversation. It was quite a difficult experience, in terms of my hearing related problems and communicating. But I was really proud of myself for going, and it was worth the struggle, to have the experience of eating Thai food in a restaurant.

Every time I did something for the first time, I gained a bit of confidence. Things weren’t easy and often weren’t pleasant, but every day I was trying to do something ‘normal’. I was positive I would be able to enjoy things again. I just needed to familiarize my body with the new experiences and learn strategies to deal with any new issues. My life was still going to be full of experiences; it was just going to be a bit different.

The first time… Part 1

My life became a collection of firsts. I was doing normal everyday things, yet for the first time with unilateral hearing. Normal things became new experiences. Simple tasks became difficult missions.

I began with attempting basic activities; ones that I hoped would prove not to be too noisy or tiring. My boyfriend and I tried to think of quiet things to do in the city where we live. We would go on short walks around the city or spend time in a park. The park became one of my favourite places. In the park, there were no immediate sounds of traffic, only the occasional muffle of cars in the distance. The gentle chatter of people in the open air proved a helpful distraction and assisted in drowning out my tinnitus. It felt relaxing to be in an open space. However, in order to get to the park, I had to first walk through the city. Opening the front door of our apartment building unlocked a world of noise. Going outside meant putting myself in a position where I felt physically uncomfortable from the pressure that filled my ear and head when I am surrounded by sounds. It would have been much easier to stay in the comfort of my own home, where I could control the sounds that surrounded me. But I enjoy doing things. I enjoy going out and exploring the city. I’m young, and I didn’t want to hide in our apartment. It was just going to take some time getting used to the new challenges I would be facing.

We started to go to more art and photography exhibitions. Often, when they were quiet, and there was space to move leisurely from painting to painting, a gallery was an untroubling and almost a soothing place to be. However, I realized that even galleries could present me with a challenge. One of the first exhibitions I went to was a photography exhibition. I had been looking forward to it. I had seen it advertised and we went on one of the first days of opening: this should have been a clue to the overcrowded environment that would await us. As we entered the room, we were surrounded by beautiful photos that had been in the world’s newspapers. Yet we were also surrounded by people. The photos were displayed on walls; either side of a narrow space that curved round in an arch, back to the entrance. There was hardly any space between each person, and everyone was shuffling around the small area, waiting to view the next photo. Everybody was talking. I could almost feel the voices bouncing from wall to wall. The sound had nowhere to go and was confined to the small densely populated space.  This experience left me feeling exhausted, disorientated and deflated.

Then there were the trips to the supermarket. These proved to be really difficult, and still continue to challenge me. There is an intensity of sounds in a supermarket that I had previously been unconcerned with. There’s a loud fan for the oven where they make the bread. There are people speaking over the PA system. There is supermarket music and people talking. In the supermarket, it is very difficult to filter all the background noise and I cannot focus well if someone is speaking to me. In the supermarket, there are the random people who always choose to speak to me: the old man who wants to talk about what kind of bread I’m buying and then starts to tell me about his son who is living in England; or the lady who’s asking for my help to find where the cleaning products are. These interactions are a challenge.  I can’t hear what the person at the checkout is saying to me. I have learnt that usually they are asking how many bags I need; if I am playing by cash or card; or if I have a store points card. I have learnt to just ask them to repeat themselves, if I don’t know what has been said to me. Then, if I really can’t hear what they have said to me, I just give them a smile. As I am English and living in Spain, and still in the process of learning the language, perhaps my lack of hearing is often disguised as a lack of understanding.

Every day I was learning new ways to tackle the issues that I was now facing as a result of my hearing loss. Every day I was going outside into a world of noise, and trying to continue to experience life as much as possible.

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.

Who would have thought that losing your hearing could be so noisy?

There is more to my story, but I am taking a pause to explain a little about dealing with the effects of my sudden hearing loss…

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 with 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. 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 am sensitive to loud noises, and with loud noises my head fills with pressure. The kitchen is a 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 also have times where I feel dizzy. It is not the full-on vertigo that I had when I first experienced my hearing loss, but instead more of a light headed sensation, usually when I stand up from a sitting position, or when I am walking outside and there are lots of people around. 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. Everyday at this moment, I wish for silence.

There have been difficult times where I have lost confidence or when I’ve experienced moments of sadness and the feeling of loss. There are some days when I feel deeply sad. 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. 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 letting me down like this. I’ve lost a part of me that played a big role in enabling me to interact with the world. I need to grieve. 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 believe that it is the things that are different about us that make us unique. I want to enjoy the hearing that I do have and feel grateful for it.

Taking corticosteroids

When I left the hospital, I was given a prescription for Prednisone tablets, which are a type of corticosteroid. I was to take them for four weeks, each week decreasing the dose. As I have mentioned before, corticosteroids are different to the type of steroids that you hear about athletes abusing.  They mimic the effects of hormones that your body produces in your adrenal glands, which are just above the kidneys. If they are taken in doses that exceed your body’s usual levels, corticosteroids can suppress inflammation. They also inhibit your immune system, which can help control conditions in which your immune system mistakenly attacks its own tissues. If you stop taking Prednisone abruptly or taper off too quickly, some people can express withdrawal symptoms such as severe tiredness or body aches. Another reason for gradually coming off corticosteroids is that this gives your adrenal glands time to resume their normal function.

With taking corticosteroids can come many different side effects. For me there were 4 main ones. The most noticeable effect for me was the loss of my muscle tone; very quickly I lost the definition in my arms and my legs. It was nearly autumn-time in Madrid, but the days were still often warm. I would enjoy going for short walks with my boyfriend, and in the warm weather I would sometimes have bare legs. Every day, when I looked down at my legs, they seemed to get thinner and thinner. I called them my Bambi legs. At first the sensation when walking, was as though my body was really light and I felt like I was almost gliding. Later, my legs started to become achy and wobbly, and I would become tired much more easily. Next were the hamster cheeks. I had read that people who take steroids can have a redistribution of fat. As the days went on, my cheeks seemed to get fuller. This side effect however, didn’t bother me too much. My face has always been very slim, and slightly puffy cheeks actually didn’t look too bad. I felt lucky, for the first time in my life, to have such a thin face, as I know that this is a side effect that can really upset takers of Prednisone who start off with more rounded faces. Similarly, another side effect was the little tummy bump that seemed to be growing with every tablet I took. It wasn’t that the tablets were making me fat, in fact my arms and legs were getting thinner, but that I had a little distribution of fat around my tummy that didn’t seem to be a result of how much I ate. Then there was the crying; this started when I was in hospital. At first I put my teary outbursts down to my situation: I was scared and tired and felt helpless. However, I realized that I didn’t seem to have any control over my emotions and would randomly start crying. These emotional eruptions continued during my weeks of taking the Prednisone at home. I would find myself thinking about my situation, about possible causes for my hearing loss, and about a future with unilateral hearing, and I would break into a mess of tears. I guess that when thinking about my condition, it was quite a normal reaction to become upset. However, there were times when tears were just unwarranted; sometimes my boyfriend would come back from work and I would be happy to see him, so I would cry. He would get me a cup of tea, and I would cry. I ended up telling him to ignore me when I was crying, especially when I was in the hospital and he had enough to worry about, than me bursting into tears at regular intervals. After taking corticosteroids for only a few weeks, I have so much sympathy for people who have to take this kind of medicine for longer periods of time. I know corticosteroids can save lives, but it is with the risk of some nasty side effects.

Every week, on a Tuesday, I would go to the hospital for steroid injections in my ear. There was about an hour each time, immediately after having the injections, that my ear felt more ‘open’, like there was slightly less pressure. But after that hour usually followed a headache and some pain deep inside my ear, with any small improvement diminishing to nothing.

It took a few weeks to get the results from my MRI scan. My doctor printed off the information, and told me that everything was ‘normal’. Although I was happy that there was nothing sinister on the scan such as an acoustic neuroma, I also felt somewhat frustrated, as we were still no closer to knowing what had caused my hearing loss. I found myself constantly searching on the internet for an answer, because it seemed like nobody else had one to give me.

Time to go home

It was Friday and what I was hoping would be my last day in the hospital. My roommate had also been told that she may be able to go home on this day, and when we awoke that morning we greeted each other with optimistic smiles and crossed our fingers.

During my week in the new room, friends came and visited me nearly every day; visitors who all came with stories and who were all bearing gifts. One day, my friend who was heavily pregnant at the time, came to visit. She shuffled radiantly in to my room, carrying an enormous and beautiful tropical-looking plant. She is only a small lady, and I could barely see her behind the long green leaves, and the red cellophane wrap which surrounded the plant. She made me giggle with stories about her pregnancy. She was only a couple of weeks away from her due date, and she told me how she felt like her hands and feet were so swollen that they resembled pig’s trotters! She also spoke about the various methods she had been trying in order to go into labor, and how she was going to start drinking some special herbal tea that she hoped would lead to a successful result.  After chatting for a long time, we said goodbye; both wishing the other well with the new challenges life was going to bring. Another friend, who I have worked closely with for around 2 years, came to see me with her husband. This friend is much taller than me, and she gives the best hugs. When she entered the room, she enveloped me in her comforting embrace. She lives outside of the city, and she brought me figs from her garden and told me all about what had been going on at the school I work at. On the Thursday evening, two other colleagues came to visit; one Italian and the other Spanish. They brought me a big card with drawings from all the children in my class, and it made me feel sad to not be able to be there with them. Again these friends told me about more news from my school, and updated me on how the children in my class were doing.

Whilst in hospital I had been desperately looking forward to normal everyday life. My boyfriend and I had talked about what I would do when I got home: take a long shower, put on clean pyjamas, eat spaghetti, go for a walk in the sunshine, watch a film together, have a cup of tea, eat Marmite on toast, sleep in my own bed… The normal seemed so exotic to me now!

My roommate showered promptly that morning. Her doctor visited the room early and I could hear him making preparations for her departure. I felt so happy for her. After the doctor had gone, she went to our cupboard and took out some clothes. Shortly she emerged from our bathroom, in a fitted flowery dress, and looking revitalized. I had to wait to be disconnected from the IV machine, and then I went to have a consultation with a specialist. It was the same specialist I had seen on the Monday. There had been no improvement in my situation. I still couldn’t hear in my left ear, and I was also finding loud noises uncomfortable, and was experiencing tinnitus and fullness of pressure in my ear. I was told that I would need to take Prednisone (a type of corticosteroid) for four weeks, in decreasing doses each week. I would also continue with the intratympanic steroid treatment of having injections in my ear, every Tuesday for three more weeks, and I would need to make an appointment for an MRI scan. I was still hopeful that the medicine would start to work in tablet form, and the thought of being able to properly relax and rest in my own home also made me optimistic for a recovery. When I got back to the room, I quickly showered and put on the grey dress that I had worn a week ago when I was admitted. It felt great to be wearing normal clothes. Soon after, I was again attached to the IV medication and I waited, sitting on my bed, for my paperwork to arrive and to indicate my time to go home. I waited a few hours. I said goodbye to my roommate and we gave each other a hug and wished each other a quick recovery.  It wasn’t too long before I was walking to a taxi, holding on to my boyfriend with relief. It seemed so bright outside. Very soon I was home.

Two weeks later it was the day of my MRI appointment and I received a message from my friend. She wrote that today we would both be in hospital. Beneath her message was a photo of my friend with a joyful smile, in a hospital gown, waiting for her baby to arrive.