Follow the Yellow Brick Game

After waiting a few minutes while the results of my initial posturography test were recorded I was asked to play some more ‘games’. I assumed this was the beginning of the vestibular rehabilitation. I was hoping this therapy would help train my balance system to manage the feelings of dizziness I was experiencing everyday.

This time there were only three bricks on the screen, arranged in a V-shape. Again, one square at a time changed from red to yellow, and I had to make my stickman move into the square that was, at that moment, yellow. The movements were simpler than they had been in the test, and the position of the yellow square appeared predictably; moving around the V-shape in a clockwise sequence. The ‘game’ was repeated, this time with the yellow bricks appearing in an anticlockwise sequence. Next, the metal plate I was standing on was programmed to be more sensitive, and the ‘game’ was played again, this time with lots of swaying, trying to keep my balance whilst controlling my stickman.   Then, all these ‘games’ were repeated but with the bricks forming an inverted V shape (like the capital Greek letter Lambda). When the plate was moving with increased sensitivity, I felt a little sick, and my stickman soared clumsily across the screen; dipping in and out of the target brick, like a staggering drunk trying to walk along a straight line.

I was asked to exit the booth and the nurse took the harness off me. My legs felt weak and wobbly and she held my shoulders to support me.  I put on my boots and was told to sit back in a chair so that I was comfortable. The nurse turned off the lights and the room relaxed into darkness; apart from a slither of natural light peeking from behind the window blind.

Across the room, opposite where I was sitting, was a thin tube about a meter long, and supported in a vertical position by a clamp.  Inside was a small red LED light which moved slowly up and down the length of the tube. I was instructed to follow the movement of the light with my eyes. I’m not sure how long I watched the light; the passing of time became difficult to judge whilst concentrating. It was perhaps only a few minutes, and my eyes started to merge the image of the red light together with its black surroundings, losing visual focus. Next, the light clamp was loosened and the tube was rotated into a horizontal position. I watched again, this time, as the red light moved from side to side.

Next, the nurse turned on what looked like a children’s bedside lamp. It was a black, short cylinder-shape. The face of the cylinder that went all around the lamp was decorated with a rubrics cube-type design. Small square lights of red, yellow, blue and green were arranged in two rows of repeated patterns. When the lamp was switched on it started to revolve slowly and I was asked to look at each green square light. My eyes focused up and down as the lamp turned, following the positions of the green squares. Then I focused on the other colours one by one; observing around 12 repetitions of each colour.

Finally, I was shown some exercises which I would need to carry out twice daily. I stood, with a chair in front of me as support, and looked at myself in the mirror opposite. The nurse stood behind me so I could copy her actions, from watching her reflection, as she demonstrated the exercises. The exercises focused on moving my head in different directions first with my eyes open and later with my eyes closed.

For two weeks I completed a half-hour session every day; harnessed into the booth, followed by a 15-minute calm-down period watching the lights. I started to learn more about the ‘game’ and the rehabilitation process. I realized there were different difficulty levels for the yellow brick ‘games’. The metal base, on which I stood, could be programmed to be different levels of sensitivity so that a higher sensitivity setting meant that a small shift of weight could make the cabin move quickly. Sometimes I would start on 40% difficulty and work my way to 70% during a session. Sometimes the red bricks were further apart, and there were varying amounts of bricks. Some of the ‘games’ involved my stickman moving back and forth between just 2 bricks, and other times there would be 8 bricks, all separated. Each brick remained yellow for 10 seconds and each level lasted for 5 minutes. After two weeks of intensive therapy I was assessed again; completing a test similar to the initial platform posturography.

I would return in a couple of weeks for one final session, followed by a consultation with a specialist to discuss the progress I had made and also to talk about the results of my vestibular tests.

“You Really Need to Learn How to Lip Read.”

I walked into a busy classroom and the teacher motioned for me to go over to where they were sitting. As I approached, they proceeded to whisper a remark about a child in their class. The whispering took place behind their hand. When they realised I hadn’t heard them, they removed their hand from their face and repeated the whispered remark; making over-pronounced shapes with their lips. The classroom was noisy, and I had no idea of context to help me in decoding what my colleague had said to me. They began to chuckle. I feigned an amused-sounding laugh; assuming this was an offhand statement which required no verbal response, and that a laugh in concurrence would suffice. Yet my reaction failed in convincing the teacher of my comprehension. The comment which followed was not about a child, but instead was directed at me. My colleague was obviously irritated at my inability to hear them, and the comment was made in response to this annoyance. It was conveyed with intense clarity. Each word was enunciated in a loud voice: “You really need to learn how to lip read.” I heard it perfectly. I left the room without a verbal response.

A couple of days later, again I went into the same classroom and again my colleague signalled for me to go over to where they were sitting. They proceeded again to whisper a remark about a child in their class. I didn’t hear them, and again the same words were spoken: “You really need to learn how to lip read.” This time, however, the comment was made twice. Both times I was unresponsive. Although I hadn’t heard them clearly the first time, I knew what had been said, though I wasn’t able to voice a response. I stared, aghast, at my colleague as they reiterated themselves, looking at me with a mixed expression of irritation shifting towards smugness; smirking at their own wit. How could they think this was appropriate, even funny?

I am accustomed to letting go of frustrating moments. I can shrug off aggravated looks from strangers when I fail to move out of their way in the supermarket, or when I don’t respond to them when they address me on my deaf side. I have learnt not to concern myself with raised annoyed voices, and irritated repetition of words. I even try to find retrospective humour in times of mishearing. I was surprised at my reaction to my colleague’s comment. My usual response of smiling to create a barrier; in protecting myself from such remarks was, for that moment, deactivated. My openness in talking about my hearing loss and explaining how it can make communication difficult, especially in noisy environments, was momentarily paused. After receiving the comment I felt vulnerable, weak, confidence drained. This colleague was someone who had asked me questions about my hearing loss and had shown interest in learning about my tinnitus. I thought they had some understanding. I failed to form a verbal response because I was in shock. I was upset. I was disappointed.

I have since had time to contemplate the interaction and have structured a response for any similar situation in the future. I should have said to my colleague that while I’m sure it wasn’t their intention, that their comment hurt me. I should have told them that I understand it can be frustrating for people to have to repeat themselves, and that this frustration may be elevated when they are busy. I would like my colleague to know that I am beginning to find myself watching lips during conversation, in situations where there is a lot of background noise, or when someone has a strong accent. I am using the shapes and movements of lips to help me translate the jumbled sounds into some meaning. I should have also told them that they had a valid point – although it could have been conveyed with some compassion or during a confidential moment. I should learn how to lip read. Not because my colleague thinks so, but because it seems like the natural next step for me in developing my communication skills.

In future, I would like to give some information to my colleagues about lip reading. I would like to suggest ways of helping someone who is trying to read lips. Just because someone has experienced a hearing loss it doesn’t mean, by some kind of transferred skill, that they are instantly able to lip read with ease. These skills take time, practise and patience. I would like to explain that background noise and lack of context can make lip-reading extremely difficult. That reading someone’s lips whilst they are speaking behind their hand is impossible, and that over-pronounced lip shapes are not helpful for the reader.

This experience has drawn my attention to the lack of understanding my colleagues may still have of my situation. Despite having explained some of the communication difficulties I face, I know it is easy for people to forget. I don’t look any different to how I did before my hearing loss. I am thankful for the people who ask questions, who listen, and who try to have some comprehension of my condition. Yet some people may not feel comfortable to ask questions. If I don’t explain how this type of comment can make me feel, then how are people going to know what an upsetting impact such a comment may have? Next time I will explain. Now I feel ready to respond to any similar remarks in a strong and positive manner, as the hearing loss advocate I am learning to become.

Specialist Appointment Part 2: Ear Bubbles, a Blocked Nose… and a Plan

…The specialist only briefly addressed my noise sensitivity. It had been my understanding from my previous appointment, with the previous specialist, that the reason for me meeting with this particular Ears Nose and Throat (ENT) doctor, was to receive some sound therapy. This therapy would help retrain the auditory processing centre of my brain to accept everyday sounds. Instead of therapy, I was given a suggestion of a procedure I could perform by myself. The advice I was given during this consultation was to subject my hearing ear to noise or music, at a volume level which I found too loud, for a period of 20 minutes. I was to do this 3 times a day. I was given the example of listening to nature sounds on my headphones, whilst keeping the volume as loud as I could possibly bear it. The ENT specialist told me that eventually, I would be able to turn the volume up to higher levels. He told me that there were special hearing centres I could go to, but these would cost money, and it was customary and also effective for patients to carry out this treatment themselves. I found it curious that in the same appointment in which I had been told to avoid loud noises in order to protect my only hearing ear, I was also told to subject the same ear to noise that would cause me discomfort.

After feeling yet a little more deflated on realizing the only therapy or support this specialist was going to offer me, was the small piece of advice he’d just given me, and not a series of therapy sessions, which I had been hoping for, I started to hastily ask my friend to enquire about a few more issues; as the feeling of outstaying our allotted time started to encroach upon us.

I asked my friend, who had accompanied me to help with translation, to question the specialist about the operation I had been told about months ago, which would straighten my nasal septum, in order to help me breathe more easily. The specialist had no visible response to this enquiry, and he continued scribbling notes into my medical history booklet. With perseverance, intent on maximizing my time with the consultant, I asked my friend to mention the feeling of pressure I have in my ears, and about my bouts of dizziness, and to ask if there was anything I could do to relieve these symptoms. Without raising his head to acknowledge us, he pointed to an examination chair across the room from where we were sitting, and he mumbled something inaudible. I obediently went and sat in the chair. I had sat in this chair before. I hoped that I wasn’t going to have the customary experience of having a viewing tube inserted into my nose, for the third time. The specialist put on a head mirror and some surgical gloves, and then he reached for an examination tool. This tool appeared less sophisticated than the viewing tube. The tool resembled a pair of metal pliers; with thinner handles, and two hooked jaws. He inserted the contraption into my nose, with both of the metal hooks sliding into each nostril respectively. He swiftly and forcefully lifted the handles of the device upwards at an angle, to view inside my nose; examining the structure of my septum. He said that my nostril was completely blocked on the left side, due to the deviation of my septum. I already knew this. I have been unable to breathe through my left nostril for as long as I can remember. I had also had this same discussion, two times previously, in this same room, with two other former specialists. This information was in my medical notes, in the booklet that was sitting on the desk in this same room.

Then, without further explanation, I was asked to leave to room. I was instructed to go, for perhaps my fifth visit over the past year or so, to have a tympanometry test. A tympanometry test is often used to assess the function of the middle ear. The results of tympanometry are represented on a graph called a tympanogram. This is a graphic representation of the relationship between the air pressure in the ear canal and the movement of the eardrum, and the tiny bones in the air-filled middle ear space. When the eardrum is disturbed by a sound, part of the sound is absorbed and sent through the middle ear while the other part of the sound is reflected. The information derived from tympanometry provides information regarding middle ear function, especially Eustachian tube function.

The nurse who carried out the test was a nurse I was familiar with. She was friendly and jolly and seemed intent on carefully explaining everything to me. In the interest of respecting her, much appreciated, caring nature, I acted as though I was unfamiliar with the procedure. She kindly explained the process to me, through my friend; my translator. An ear probe was promptly placed, first into my hearing ear, and then into my deaf ear, to test the responses. As the probe in my hearing ear caused the air pressure in my ear canal to change, I heard some low-pitched tones. When my deaf ear was tested, it remained silent, with only the sound of tinnitus prevailing. While the pressure was changing, measurements of my eardrum’s movement were being taken and recorded. The test was over in a few minutes. When the nurse examined my results, she scrunched her face into a painful expression. She asked me if I have the constant feeling of being in an aeroplane. Yes! I have an unceasing pressure in my left ear, and though not as pronounced, in my right ear too. It is the feeling of pressure, comparable to being in an aeroplane and not being able to pop my ears. I also have the occasional sound of little bubbles similar to those in the foam made by bubble bath, or bubbles in fizzy drinks travelling to the surface, escaping into the air with a crackling sound. These sensations are sometimes accompanied by sharp deep and momentary pain. Yes! This pressure is causing me constant discomfort and is more difficult to manage than my actual hearing loss. Yes! This pressure I feel is what I’ve told every specialist about. Yes! This wonderful nurse had immediately identified this as a significant source of discomfort and was showing empathy towards my situation. She was the first person in over a year of consultations, to not just read my results and identify a problem, but to actually show some understanding of the unpleasantness I was experiencing.

I returned to the consultation room and showed the doctor my tympanogram. After regarding it for a moment, he told me with confidence that the reason I have the feeling of pressure in my ears is because I can’t breathe properly. This is not what I’d been told before. I had been told that there could possibly be a link between my inability to breathe effectively through my left nostril, and my ear pressure. I had believed that the pressure was a consequence of my hearing loss. The onset of the feeling of pressure had, after all, coincided exactly with the moment I lost my hearing. I told him that it had not been communicated previously to me that the issues with my nose were the certain cause of the discomfort in my ears. He repeated with a vehement assurance that the pressure in my ears was a direct result of my difficulty breathing. This was something new to me.

The specialist then questioned me about my sleeping habits. I told him how I have struggled to sleep, to the best of my recollection, for most of my adult life. I told him how I find it difficult to fall asleep, due to problems breathing. I told him how my brain seems to wake me up just as the rest of my body feels like it’s going to sleep. I told him that I am only able to sleep effectively whilst lying on my left side. If I sleep on my right side; the side of my functioning airway, the nostril closes up which means I can’t breathe at all through my nose. He told me that I needed the septoplasty. This operation would straighten my septum, allowing for better airflow through my nose.

There are long term effects of a deviated septum. In my case, having a deviated septum has meant that not only have I had many sinus infections, but I also often get throat infections; as I regularly breathe through my mouth. The blocked nasal breathing due to septal deviation also has a negative effect on the Eustachian tube, which means drainage from the nose is not efficient. If what the specialist was saying was correct, having the operation could lead to better tubal drainage from my nose, and as a result, this could relieve some of the pressure I am feeling in my ears.

My hope for this operation is that it will help me feel more comfortable whilst sleeping at night, as I will be able to breathe through both nostrils. After some time I should start breathing through my nose more during the night, and therefore shouldn’t wake up as much; as a result of having a dry mouth, or as a response to my body warning me that I am not managing to get enough oxygen into my lungs. In consequence, I hope I will also feel more refreshed when I wake up. My most cautious hope, however, is for an eventual reduction in the pressure I am feeling in my ears.

And so, after over a year of rapid changes of emotion, I am once again feeling hopeful…