Hearing Me – A Documentary for the BBC World Service – Now Available to Listen to!

BBC World Service

It’s been two and a half years since I suddenly lost the hearing in my left ear, and today I am celebrating all I’ve achieved since my hearing loss.  Thanks to the BBC World Service, I am very happy to share this glimpse into my life without full sound.

Hearing Me is now live to listen to! Please note, a transcript is also available through the same link – just scroll down the page to download:

https://www.bbc.co.uk/programmes/w3csynqv

Another big thank you to Chelsea Dickenson (Audio Always) who spent 4 days following me around Madrid with a microphone, and who showed me just how much energy and attention goes into making a radio documentary.

Please take a few minutes to listen and share. Thank you 🙂

Hearing Me – A Documentary for the BBC World Service

BBC World Service

Something exciting happened last month!

I was involved in making a radio documentary for the BBC World Service, which describes some of my experiences of living with hearing loss and tinnitus, and also reminds us not to take our hearing for granted.

I feel so lucky to have had the opportunity to take part in this, and to be able to share my story.

Hearing Me, is now up on the BBC World Service’s schedule: https://www.bbc.co.uk/programmes/w3csynqv

The documentary will be played several times so that people in different time zones can listen to it. You can find these by clicking ‘more’ below the programme information.

Afterwards, it will be available online through the same link as above, and it will also be part of their ‘The Documentary’ podcast series: https://www.bbc.co.uk/programmes/p02nq0lx/episodes/downloads

Please note there will a transcript to enable listeners to follow the dialogue.

A huge thank you to Chelsea Dickenson and Audio Always for creating such a personal and creative piece, I absolutely love it, and hope my readers/listeners (!) all do too!

“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 in to 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.

‘Top 50 Deaf Blogs’ Award!

Dear readers,

I recently received an Email from Anuj Agarwal, the Founder of Feedspot, informing me that my blog has been selected as one of the Top 50 Deaf Blogs on the web! This is the most comprehensive list of the best Deaf blogs on the internet.

I am extremely happy to have been included in this list, as this is where I found many of the deaf blogs which helped me so much when I first experienced my hearing loss, and which I still follow today.

I am currently ranking number 35! Please click here to see the complete list.

Thank you to my readers for your continued support, likes, and comments.

Carly

 

Stranger Things: My Septoplasty Story – Part 3

At 8am the night-shift nurses said their goodbyes to me, and new staff started to enter the room.  An hour or so later I was given some antibacterial hand gel to clean my hands, and was presented with a yogurt, a clear jelly, a pack of plain biscuits, and some thick sweet fruit juice. I devoured it all. I paid only momentary notice to the difficulty I was having in swallowing food and eating, whilst only being able to breathe through my mouth. A doctor then promptly came to give me my medical notes and said I could go home. My boyfriend arrived and a nurse changed the bandage on my nose. This time the bandage was wrapped around, leaving a small opening, showing a glimpse of the tip of my nose. My boyfriend later commented that it looked like a beak and that I should paint it yellow. Soon I was sitting up in a chair, back in the first recovery room in which I’d been the night before, just before my operation. We were given my medical notes, a Ziploc bag with painkillers and antibiotics, and an appointment for the next day for me to have the packing removed from my nostrils.

The rest of the day I spent in exhausted fogginess. I lay on the sofa and dozed intermittently; happy to be home. My boyfriend bought groceries, made soup, and washed my hair; which made me feel a little better. My nose was extremely uncomfortable. It felt like the worst congestion I could imagine; like having a terrible cold, but not being able to blow your nose. As the day turned into evening I became increasingly uncomfortable. The congestion seemed to be spreading to my throat, and breathing was becoming more of an effort. My bandage was quickly turning red. I frequently had to clear my throat of bloody mucus, which was unceasingly replenishing in supply. By the end of the evening, whenever I attempted to swallow; little pink bubbles of mucus foamed in the small opening in my beak.

That night I slept. It wasn’t a restful sleep, more of an exhausted crash. I kept waking myself up with the loudest of snores; a consequence of my mouth breathing. On waking each time I realised my discomfort, and I made numerous trips to the bathroom to spit out more mucus. Then around 5am I woke in a panic, almost unable to breathe. I went to the bathroom with the feeling of something stuck in my throat. Whilst looking at my reflection in the mirror through tired eyes, I forced the muscles in my throat to contract and relax in order to remove the obstruction. Then it slowly appeared. I gently pulled on the offender; some gooey, mucus soaked gauze. It was like something from a horror film. I was just happy that the rest of the packing from my nose didn’t follow.

The next morning I had my appointment at the hospital. I walked into the consultation room, and was happy to see the initial doctor I had spoken with, when I had first lost my hearing. Today she spoke to me in Spanish.  She examined my throat for gauze, and then with a thin metal hook, she removed the packing from my nose. I had an immediate sense of relief. Oh my goodness, I was so much more comfortable. The specialist asked me to try to breathe through my nose. I had a few wonderful moments of clear airways. I was breathing through both nostrils! I felt a little lightheaded. Then rapidly the airways started to clog. The doctor carried out the usual nasal examinations; inserting the thin rigid tube with the light on the end, and then using the metal pliers-type tool to lift up the end of my nose and view my nostrils. She cleaned out my nose using a spray that stung slightly, and told me that the operation had gone well.

When I arrived home that day, I realized I could smell the soup from the night before. It hadn’t even occurred to me that I couldn’t smell anything the previous day. My nose freely dripped with blood all day. I resembled the character Eleven, from the television series Stranger Things, though I was unknowing of what magic I was performing during my nosebleeds.

It has now been 9 days since my septoplasty operation. I still have numbness in my top front teeth and on a small patch of my palate. The headache, stuffiness and pain from the congestion is lessening every day. My nose is still sore, and I am still very tired. A couple of days ago I discovered stitches on the left side of my septum, which I assume will dissolve or fall out over time. Every day I have to perform nasal irrigation to clean out my nose. This entails using a specially designed plastic bottle with a thin applicator spout with a plug on the end, which fits into the nose. I fill the bottle with water and add a salt solution, and then squeeze the bottle; allowing the water to travel through one nostril and then come out through the other. My right nostril is now clear. Although I am not yet able to breathe air in through my left nostril, due to the swelling and stitches, I have been able to breathe air out of this side of my nose; which I wasn’t previously able to do. This is already a positive result.

My next appointment at the hospital is in a couple of weeks, and I am in excited anticipation for the day when I am able to breathe with ease.

Waking up: My Septoplasty Story – Part 2

I awoke from a deep satisfying sleep with my first memory being a blurry vision of my boyfriend. Well, it was rather the shape of my boyfriend in a burgundy haze; the colour of the top he was wearing. I was moving past him in my bed. Bleary eyed, I blew him a kiss. He followed me into a recovery room. The room was brightly lit, and my eyes slowly started to focus. I excitedly told my boyfriend that I had been dreaming. I was so hungry and my throat was sore. I recollect eagerly telling the nurse that I was hungry and that although I didn’t eat meat or egg; that fish was okay. Maybe this was only a thought? My boyfriend told me later that he spent quite some time asking me whether I wanted to keep my mobile phone with me whilst staying in hospital overnight. I couldn’t make the decision. This scene is a confused dream rather than a memory to me. I saw the nurse gesturing with her arm and saying, “Adios”; requesting my boyfriend to leave. He gave me a kiss. He told me that my nose was bandaged, but that I looked okay.

Shortly, I was feeling more awake. There had been only one other patient in the room when I had arrived, and they had since been wheeled away. Now there was just me, in a space large enough for 5 more beds. There was a finger clip attached to my left index finger, which I believe measured the oxygen in my blood. Adhered to my chest in a seemingly random pattern, were circular stickers with electrodes to monitor my heart; these were attached to a machine situated behind my bed. Wrapped around my right arm was a blood pressure cuff which every hour, on the hour, inflated and took my readings. I was intravenously being administered, a steady supply of saline solution, antibiotics and painkillers. I was extremely well monitored.

There were numerous nurses that came to visit me and to check my vital signs. One of the nurses, evidently meaning well, spoke directly into my deaf ear; her lips pressed against it, with the intention of aiding my hearing. She must have been informed of my hearing loss beforehand, although evidently she hadn’t been briefed on which particular ear was affected. I didn’t have the energy or the emotional resolve to tell her that her efforts were being wasted on this ear. Later, after I guess a lack of adequate response on my part, she realised she was speaking into the wrong ear, and for the rest of the time she replicated her close-talking technique, into my hearing ear. I appreciated her committed determination to help me understand the proceedings. The dark green bed sheets were straightened by two other nurses, and within less than an hour of waking up I was happily straining my eyes to read a magazine. I didn’t want to go back to sleep yet. I already felt like I’d had a period of concentrated rest, albeit brief. I wanted to be conscious. I didn’t like the idea of being unaware of the activity around me.

I asked the close-talking nurse if I could go to the toilet; assuming she would hook my IV bottles onto the moveable pole, so I could wheel it behind me as I walked. Unfortunately, I was mistaken. The nurse collected something from a small cupboard and then returned to my bed with the object in question. It was a bedpan made of a thick paper material. She lifted up the dark green sheets and placed my paper throne in position and then walked away. Well, after a few minutes I concluded that there was no way my body was going to allow this to happen. Maybe it was a result of the anaesthetic. Maybe it was simply due to the fact that I hadn’t consumed any liquid all day. Or maybe, and most probably, it was because my body was in a state of stubborn shock. The toilet was only a few steps away from me bed – Why couldn’t I attempt to go there? I was lying down – Surely I couldn’t pee whilst lying down!? The nurse took the bedpan away after quite some time, without much comment.

That night was a restless one with merely fragments of disturbed sleep. My nose was packed with gauze-covered cotton, and there was a pad of gauze taped underneath my nostrils to soak up any blood. I also had gauze and tape wrapping around the outside of my nose. I could only breathe through my mouth. I was thirsty, yet I was only allowed a few sips of water that night, before the lights were turned down. I guess this, and the introduction of the paper throne, was part of the aftercare procedure for patients following anaesthesia. I had to sleep propped up at an angle to allow the warm trickle of blood from my nose to drain into the gauze. There was a clock on the wall to the left of me, and I lay watching the movement of the hands. I slept for what seemed like half an hour, yet after observing the clock, I realized only a couple of minutes had passed. Time was behaving strange. I guess this was a consequence of the anaesthetic, or the drugs I’d been given. There was a young male nurse who checked on me every hour during the night; each time making a note of my vitals. With each check he asked if I needed anything, and if I was okay. Between his checks I realized he was asleep in a chair around the corner from my bed. Early in the morning he asked me if I wanted to try and pee again. I agreed. I hoped this time I would allowed to use the facilities. But to no avail. He was soon sliding my paper throne into place. I waited and waited, urging my body to allow this unfamiliar process to happen. And then finally it did! The nurse seemed very happy with my achievement and exclaimed “Muy bien”! I had the impression that this had been a prerequisite task to be accomplished before my release. I breathed a befitting sigh of relief.

Roses are Red: My Septoplasty Story – Part 1

We were waiting in a room full of voices and echoes, and were discussing how to pronounce the word for ‘surgery’ in Spanish. There was a constant movement of people in and out, and around the room. Some would walk into the room wearing orange visitor stickers. Some were carrying a single red rose wrapped in a clear sleeve. It was Valentine’s Day, and the day of my operation to correct my deviated septum; to straighten it, to allow better airflow through my nose.

I was sitting with my boyfriend in the off-white-coloured waiting room. Around the perimeter of the room were rows of chairs, with metal frames and hard wooden backs that curved slightly into the seat. In the middle of the room were two more rows of the same chairs; back-to-back. There was a dropped ceiling with suspended ceiling tiles; the Styrofoam type that are often found in offices or classrooms. Some of the tiles were discoloured or stained with the light-brown outline of irregular shapes, and were interspersed with rectangular light panels. The walls were bare apart from two Van Gogh framed prints: his Sunflowers and a painting of some wheat fields. It was difficult to judge the time of day as there was only one window, allowing a small amount of natural light to enter the room. I sat, looking around the room and watching the movement of people. There were people here of all ages. I scanned the room observing their faces. Like a detective I assessed every person in the room. Were they wearing makeup? Jewellery? Nail polish? These were things I was told to strip my body of before the operation. Were they wearing comfortable, loose-fitting clothing? I was evaluating who was here for an operation and who was simply visiting a relative or friend. There was a small door off from the waiting room, to the left of where we were sitting. Some people walked straight through this door, with confidence and without the need for permission. Others had their name called by a nurse before entering. Some people came and went. Some went through the door without returning. Everyone seemed to be here for a different purpose. Every time the door opened, a sharp unsettled feeling attacked deep down in my stomach. Was it going to be a nurse calling my name? The waiting was arduous. After about 3 hours had passed we started to doubt whether we were in the right place. My boyfriend went to check; back to the original reception desk we’d passed through before entering into the room. My appointment was for 4:30pm. It was now after 7:00pm. We were playing the game again. We were in a Spanish hospital with no idea of the procedure for having an operation here. This was new territory for us. The receptionist confirmed we were in the right place, and that they were behind schedule.

When my name was finally called it was around 8pm, and the waiting room was almost empty. I was hungry and tired, from fasting since an early breakfast. My boyfriend and I walked through the door into a corridor that opened out onto a ward. In a small changing room I dressed in a hospital gown. On my feet I put elasticated blue foot covers that looked like delicate elf shoes. I completed my outfit by tucking my hair into a blue hair net; an action that reminded me of a short period of time spent working in factories, many years ago. We put my clothes in a locker, and retrieved the key: number 1. Then we went to wait in another room in which there were about 6 beds. I sat in a chair next to a hospital bed with dark green sheets. This seemed to be a recovery room. There were patients leaving the room after being given their hospital notes and Ziploc bags filled with medication. Some patients were in beds, with a relative beside them; waiting for them to feel well enough to return home. We waited here a while longer. I started to feel nervous.

Shortly, I was asked to get into the bed with the dark green sheets. I was wheeled through the hospital, into the lift, and then through some corridors. I was aware of my boyfriend changing position, moving from behind the bed, then to my side; endeavouring to keep up with the fast moving trolley. The two nurses who were controlling the bed looked tired and had sour faces. At an intersection of corridors one of the nurses mumbled something hurriedly in Spanish. She was telling my boyfriend to give me a kiss and to wait “over there”. The two nurses hardly slowed the motion of the bed, and I could see my boyfriend was still processing what they had said. I told him to kiss me, and as he swiftly moved towards me, I observed his confused face in the moment of our separation.

I was on my own now. I was wheeled to a corridor where I was left without comment from the two tired nurses, for what I guess was about half an hour. I lay in the bed with my good ear facing the wall. I could hear people; I think they were behind me down the corridor. They were the voices of women speaking in quick passionate tones. They didn’t sound happy. Someone was shushing them continuously. During my wait, a few people came to talk to me, and to read my medical notes. They all asked me similar questions: Where was I from? How should they pronounce my name? Do I have any allergies? All this was conducted in Spanish. I was happy to talk to people as they came to my bed. Talking was a distraction. During this time I was told that I would have to stay in hospital overnight, as it was now late, and there wouldn’t be time for me to recover from the anaesthetic. One of the members of staff asked me if I was warm enough. I told her that my feet were cold, and she folded a blanket, placing it over them. The anaesthetist also introduced himself. I think he said his name was Pablo. He was handsome, and had a kind face.

Without warning my bed began to move backwards. As the bed reached a doorway, the trolley was turned around and I was facing one of the tired nurses from earlier. I was going into the operating theatre. I remember the colour green. I made an effort not to observe the room too much. The kind nurse, who earlier had asked me if I was cold, came to speak to me. She questioned me as to whether I had noticed the feeling of warmth on my feet. She had positioned a heat lamp over them, and I thanked her. The anaesthetist was situated on my deaf side, and he was kneeling down, talking to me whilst holding my hand. Simultaneously he was using his other hand to pat my arm; trying to find a vein. I smiled as he talked. I couldn’t hear him. After a moment I told him I was deaf in my left ear, and he told me he would talk louder. He said jokingly that he would try to make the sound of his voice bounce off the wall opposite, and then back to reach my good ear. The cannula was inserted with a quick sharp sting, and the anaesthetist asked me to breathe some air from a mask made of thick black rubber. I breathed in the air, and then breathed in some more…