Living with Single-Sided Deafness

I lost the hearing in my left ear through sudden hearing loss in August 2016. There wasn’t a known cause for my hearing loss, I wasn’t feeling ill and I didn’t have an infection. One day the world to the left of me just fell into silence. The hearing loss was profound which means I have no functional hearing in my left ear, and for just over two and a half years I have been living my life with single-sided deafness (SSD).

People with SSD are able to hear through their ‘good’ ear, yet have a profound hearing loss in their other. I am thankful that I am able to hear with my right ear, yet living with SSD comes with its challenges.

Sound localisation is a skill enabled by having two working ears, and so with only one hearing ear, I have no idea where sound is coming from. I might hear some music or a noise, but I don’t know which way to look to see what has produced the sound. Trying to find a mobile phone that is ringing results in me wandering hopelessly around my apartment with my ‘good’ ear leading the way and looking to see if I can spot it, usually ending up back where I started and realising the phone had been next to me all along. Locating a music source is also a challenge. There was one occasion where I was walking in the centre of Madrid, where I live, and I could hear a busker playing the guitar and singing a Bob Marley song. Whilst gazing around to see if I could find the owner of the interesting staccato-type singing I stopped in my tracks with a jump as I almost fell over the person responsible; who was positioned in my path, undetected by my gazing view and lack of directional hearing.

Thinking that all sounds are coming from my right has resulted in some scary instances when crossing roads when I haven’t realised traffic is approaching from my deaf side. It has also resulted in some, in hindsight, comical moments. One day, I was sitting on a seat at the end of a row of seats, on the metro train. I thought that I could hear someone playing the accordion somewhere far down to the right of the train. I was feeling relaxed, and as I tried to focus on the tune that was being played, I saw the woman opposite looking at something next to me. I turned to my left, to where she was looking, only for me to jump up in my seat as I let out a little yelp; startled to see the accordion player was actually standing right next to me, on my deaf side.

My boyfriend automatically walks on my right-hand ‘good’ side where he knows I will hear him. This prevents me from having to continuously turn to face him with my ‘good’ ear, in attempts to catch some snippets of conversation. With friends, who often forget which is my hearing side, or for those who don’t consider it, I place myself on their left. When they inadvertently change sides whilst crossing a road or when they stop to look at something in a shop window, I find myself dancing around them; trying to position myself as quickly as possible back on their left side.

When I’m on my own in everyday places and situations I sometimes feel vulnerable. I worry about crossing the road, and not knowing which direction to move out of the way when I hear the siren of an emergency vehicle. 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 unwittingly ignore people to the left of me and often notice a frown on a stranger’s face, presumably because I have failed to respond to them or to move out of their way. I find myself constantly scanning my surroundings; checking people’s faces to see if they show any sign or clue that they are speaking to me.

With single-sided deafness, I find it difficult to hear when there are other noises present. Our brains are responsible for selective listening, which is more challenging without the help of a second ear. In a noisy environment, it is difficult to focus on a single person’s voice. Socialising 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.

With my single-sided deafness has come tiredness, frustration, loneliness within groups of friends in conversation, and super-sensitivity and hyper-reactivity; meaning I am startled easily by unpredictable or sudden noises. I also have difficulty multitasking and find it hard to perform another task while listening.

Yet, I have found that being able to see some humour and positives, however small, in some of the situations I find myself in, can help me stay positive. For instance, with single-sided deafness, I can block out sound during the night or when having a nap, just by putting my ‘good’ ear to the pillow. I only need to use one earphone when listening to music, and if there is someone I don’t want to listen to, I can make sure they are sitting on my deaf side.

If you or someone you know is also living with SSD, I’d love to hear from you. Please feel free to leave a comment and share some of your experiences.

 


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Small Talk with a Stylist

During the summer, while spending some time in England, I had a really great experience at a hair salon. Although I was very happy with my new style, this wasn’t the reason for the experience being great. It was great because I had a conversation with my stylist. This maybe doesn’t sound like anything noteworthy, but for someone with a hearing loss, to be able to converse in a hair salon is actually something pretty fantastic.

There is so much background noise in a hair salon. There are the hairdryers and the music that is often played loudly to be heard over the sound of the dryers. There must be the noise of water running out of the taps from the sinks where people have their hair washed, but this gets lost amongst the other sounds. There is the noise of people talking in raised voices attempting to converse; in a battle of audio strength with the other sounds of the salon. There are generally no or few soft furnishings in hair salons – I guess it wouldn’t be very practical to have thick curtains and carpets, due to all the stray hair. With an absence of soft furnishings, there is nothing to absorb the sound, and so it spends it’s time bumping into the mirrors, bouncing off the windows and porcelain sinks; continuously combining with the additional noises being produced every second.

It almost seems like it is part of a hairdresser’s job to make small talk with their customers. A hairdresser may get to know their client’s holiday plans; where they work; where they live; if they are in a relationship and if so for how long; and whether they have kids. The salon chair is often akin to the therapist’s couch; inspiring people to speak about their personal lives. Since my hearing loss, I have struggled with the whole hair-cutting experience due to the amount of noise in hair salons and conversation difficulties. I was feeling a little nervous before going to this appointment. I had waited until I was in England visiting my sister to get my hair cut; at least this way I wouldn’t have to worry about trying to speak Spanish as well as not being able to hear properly. The appointment was at my regular hair salon, though I hadn’t met the stylist before. As usual, the stylist and I had a quick conversation about the type of cut I would like, and then just before the stylist left to ask a colleague to wash my hair, I quickly added (whilst cupping my left ear with my left hand), “Oh, by the way, I’m deaf in this ear.” Lauren, the stylist smiled and assured me that this was fine.

After having my hair washed, I was back again sitting in the chair facing my reflection in the mirror. During a couple of weeks prior to this appointment, I had been trying to develop my lip-reading skills naturally by watching lips during conversations and had had some success in doing this, especially in bars and restaurants. I was keen to continue practising my new superpower-in-progress.

Even the best lip-readers are only able to understand around 30% of what is actually said by solely relying on lip-reading; the rest is educated guesswork, gathered from the context.  In fact, ventriloquists are able to produce a voice with little or no movement of the lips, since most sounds are produced inside the mouth where you can’t see them. And so, there is a limit to how accurate even the most skilled of lip-readers could ever be because most sounds aren’t produced with the lips. Nevertheless, watching a speaker’s lip movements, facial expressions and gestures during a conversation can be very beneficial in aiding verbal communication.

I watched Lauren’s lips in the mirror as she spoke, and in using the shapes her lips were making along with the sounds and words I could hear, I was able to follow most of what she was saying. After telling me about her work schedule for the week, she asked me what I did for work. I told her that I teach in Madrid. She told me she had never been there, though she had once been to Barcelona and that she had loved it. She commented on her holiday saying, “You know Pans, Pans and Co’?” (This is a sandwich franchise in Spain) “Why don’t they have them here? It’s like, they have Subway here, but Pans and Co is way better. The bread is amazing! Oh, I just want a Pans!” I smiled at this remark, and the conversation continued in a light-hearted dance of words.

I briefly noted that whilst watching the movement of Lauren’s lips in the mirror, it at least meant that I wasn’t spending the time awkwardly looking at my reflection. She must have noticed my stare, and asked me, “So do you lip-read then?” My secret was out. She wanted to talk about it. Great – I was happy to discuss my new project. I told her that I was trying to learn how to read lips. Lauren then asked whether I had always been deaf in my left ear. She seemed really interested – not just the general hairdresser level of interest – she actually seemed curious about my hearing loss. I told her my story in brief. She then surprised me by telling me her story. She recounted how she had caught glandular fever multiple times when she was a child, and this had resulted in her losing the hearing in one of her ears. She told me that she had found it really difficult especially since the doctors weren’t able to tell her whether her hearing would return. Luckily it did return within 3 months. She explained how during her time with hearing loss, she used to have the sensation of being underwater; the sound and pressure of water filling and whooshing past her ears. I told her that I also have this feeling.  I described how I always think sounds are coming from my right side, and she finished my sentence by saying, “Because that’s the ear you are hearing everything through.” The conversation moved to some more general discussion about hair thickness after that. But for that brief moment, it had felt so great to have shared a few words with someone who had an understanding of my hearing loss.

After this small exchange of experiences, Lauren switched off the hairdryer every time she wanted to tell me something of importance. She also spent most of the time with her body turned so that I could look at her face-on in the mirror, and follow her lips and her words. I felt such a sense of accomplishment to have been able to understand so much more of the conversation than I had on previous trips to the hair salon, following my hearing loss. Of course, I didn’t understand everything that was said, but I doubt many people do. I left the salon with a new hairstyle and some newly found confidence in my developing superpower.

Testing Testing

Eight weeks after experiencing sudden hearing loss in my left ear, I was back at the hospital to have a test called a Brainstem Auditory Evoked Potential (BAEP). I had read that this test involves monitoring responses to a series of ‘clicks’ using electrodes positioned on the scalp. In my case, the BAEP could be used to assess conduction through the brainstem and auditory nerve pathways that are not as accessible to other testing procedures. In other words; the results could give the specialists more of an idea as to why I couldn’t hear anything in my left ear.

I arrived at the hospital early in the morning, slightly before the time of my appointment. I was on my own, and feeling somewhat nervous about what was going to happen. I watched as people went into the room where they do the hearing tests. I watched people who arrived after me, go in before me. I guess that due to the amount of time the test was going to take, they saw the people first who were going to have the, less time consuming, routine hearing tests.

My name was called, and a man explained to me what was going to happen. He cleaned my forehead and behind my ears with what I assumed was alcohol, and then used what felt like a small piece of sandpaper to rub the same areas in order to help the electrode pads stick to my skin. Then he stuck two pads in the middle of my forehead, one above the other, and also one behind each ear. My face stung slightly as the alcohol permeated my newly exfoliated skin. The electrode pads were white circles of thin plastic with a silver metal circle and raised bit in the middle; where wires would be attached. They looked like small targets on my head. I asked one of the staff members who, after my many hospital visits, I was now well acquainted with, and who always greeted everyone with a smile and a joke, for something to tie my hair up with. He shortly emerged from one of the rooms and handed me an elastic band. So there I was, on my own; hair roughly tied up with an elastic band and white targets on my head. I waited for the next step of the process. I was sitting in a doorway. Nurses and hospital staff kept passing by, taking a look at me and making little comments such as, “Pobre!” or “Pobrecita!” –  Literally translated as “Poor person!” or “Poor dear!” Every time someone came in or out of the room of the doorway in which I was sitting, the people in the waiting room opposite were presented with me, the ‘pobrecita’, with the electrodes stuck to her head. When the doors slid open, there I was for all to see! I waited for over an hour. They were carrying out the test that I would be having, on a young child, and it must have been taking longer than they had planned for.

When it was my turn, I was shown to a small room with white walls, two chairs, a desk and a computer. I was asked to sit on a chair that was covered with a white sheet. Wires were then connected to pads on my head and behind my ears. I put on a pair of headphones and I was told to relax and listen to the ‘clicks’. My brain was going to do the work for me; I just had to sit there. I was also told that sometimes people fall asleep during the test. Throughout the process, I could hear lots of ‘clicks’. Some that were played into my good ear were almost painfully loud. I have no idea how anyone could possibly fall asleep; sitting in a small room with a stranger, with electrodes attached to their head with clicks being randomly played at loud volumes! I had the thought that, what if my brain was picking up the signals from me hearing my tinnitus noises and confusing them with the real sounds that were being played into my ears. Would this show on the results? I’m sure this isn’t the case, as most people with hearing loss also have tinnitus. But it was a thought that intrigued me. The test took about an hour. The electrode pads were removed and I was free to go home.

Three weeks later I was back at the hospital, with my boyfriend, for a consultation with an Ears Nose and Throat specialist. We were there to talk about the results of the BAEP test; whether the steroid tablets and steroid injections had helped me; whether my hearing had improved; and how I was feeling in general. My boyfriend and I had unintentionally placed a lot of hope in this appointment. We hoped the specialist would be able to tell us some more information or give us a plan of what to try next. We walked into the specialist’s office with all of our questions written down, so I wouldn’t forget to ask them. Things always feel a bit rushed in the hospital, and they are always so busy. My heart sank when I realized it was a specialist whom I hadn’t previously met. I had hoped to see one of the many specialists who were familiar with my story. I had done a hearing test before I went into the consultation room, and the specialist explained that the test results were the same as when I first lost my hearing. He told us that the MRI results were normal: I already knew this as I had received these results weeks ago from my GP. He also told us that the BAEP test had shown the same as the hearing test – that I couldn’t hear. The test results weren’t explained in any more detail.  He said that sometimes there are cases of sudden hearing loss where, within a 6 month period, a patient’s hearing comes back naturally. He told me to wait for three more months and then come back for another consultation. Maybe a hearing aid could help me if there was no change in my condition.

Deflated, we went outside of the hospital and sat down on a bench in a park across the road.  I cried. They hadn’t told me anything I didn’t expect or already know.  I didn’t really expect them to have any more answers to tell us. But I couldn’t help but raise my hopes for a solution. I didn’t want to stop trying things that could help my situation.

We needed to put our minds at rest. We decided to seek a second opinion.

 

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.