The first thing he said to me was that I would never get my hearing back. There was no greeting. In fact, he didn’t even lift up his head to look at me, as he spoke these opening words.
I was in the hospital again for a consultation with another specialist. My usual Ears Nose and Throat doctor (ENT) had gone to study in England, and so I was again preparing myself to tell my story to a stranger.
Prior to meeting this new specialist, I had carried out some hearing tests. The first test, as always, was a pure tone test, which tests the ability to hear a number of different tones (beeps), using a pair of soundproof headphones. Next was the usual bone conduction test which measures the ability to hear tones, by placing a small bone conductor behind the ear. Normally, these are the two tests I undertake before speaking to a specialist. This time, however, I had been asked to carry out an additional assessment: a speech recognition test. This test is similar to the pure tone one, but instead of listening to different tones, the patient listens to words spoken at different volumes, which they are then asked to repeat. The speech reception threshold shows how well the individual hears and understands ordinary conversation. I had carried out this test before when I had consulted with the specialist in London. That test had been conducted in English; this time, however, I would be doing it in Spanish. When I completed the test in my mother tongue, I found that even if I couldn’t clearly hear the whole word, I could guess what the word was; based on the associated tones I could hear, and my knowledge of the English language. This time I was obviously at a disadvantage. I am not fluent in Spanish, and this felt more like a language test than a hearing one. The audiologist assured me that the words would only be two syllables and would be very basic.
Well, the test started off OK, with me repeating a few simple words being played into my good ear. Then things got more difficult. I found I was concentrating so hard on listening to the two syllables of each word that I either ended up missing the start of the word or the end of it. And, as asking the audiologist to replay the word wasn’t an option, I ended up just saying the one syllable that I knew I had heard. This carried on with me grimacing at every non-word I was saying. Then the audiologist turned up the volume and I was in immediate pain. I looked through the glass screen at her and pulled a distressed face. She spoke into her microphone and asked if it was too loud. I told her it was, and she said she would turn the volume down. She assured me she had done this, yet I continued in pain, with the distressed look on my face, as she continued to play more words at me. I was relieved when the test was over, and when she came into the booth where I was sitting to change the headphones over, in order to test my deaf ear. I then sat patiently whilst the test was carried out on my deaf ear; aware that the audiologist was on the other side of the screen, busy playing Spanish words into my deaf ear, yet unable to hear them. Some minutes went by, and then she played the words really loud into my deaf ear. I was again in discomfort, yet she didn’t turn down the volume. The noise was distorted, yet I was able to attempt to vocalize some of the sounds. Then the test was over, and I was asked to wait outside.
Over 3 hours later I was called into a consultation room to speak to the new specialist. The head-teacher of the school I work in had kindly suggested my Spanish friend accompany me for this consultation, to help with translation. I had been told that this new specialist would be giving me some therapy to help me cope with my sensitivity to sound. I had also been told that this new specialist didn’t speak any English. I knew I had an adequate level of Spanish to be able to understand the main points of discussion. I would, however, find it difficult to describe any sensations associated with different volume levels or types of sound.
Well, thank goodness my Spanish speaking friend was with me. The specialist mumbled his way through the entire consultation. He barely even moved his lips as he spoke! As someone with a hearing loss, it is very difficult for me to understand someone if they do not speak clearly. Even my hearing friend who speaks Spanish had to move closer to hear what he was saying, and also asked him to repeat himself on more than one occasion. As someone with hearing loss, I also find it difficult to hear speech if there is any background noise. And, a few minutes into the appointment, the distractions commenced.
We were sitting in a small square consultation room, and at the far end of the room was an open doorway which led to a corridor where staff were busily chatting and walking from room to room. In addition to the almost inaudible muffled tones being uttered by the specialist, the added distraction of the staff in the corridor further hindered my ability to follow what the specialist was saying. Then two people entered the small consultation room. One of the people was a young-looking guy wearing a white lab coat. He proceeded to the sink on the right-hand side of the room. He turned the tap on and started to do something which sounded like it involved a scrubbing brush... Chat chat chat, clomp clomp clomp, swoosh swoosh swoosh, brush brush brush… mumble mumble mumble…The brushing and the sound of water flowing rapidly into the sink, mixed together with the corridor noise, forcing the specialist’s mumbling to grow more distant. The other person who had entered the room was a female nurse, who proceeded to the left-hand side of the desk where we were sitting. She started flicking through a stack of patient’s files; pulling them out of slots of a metal trolley, and flicking some more… chat chat chat, clomp clomp clomp, swoosh swoosh swoosh, brush brush bush, flick flick flick… mumble mumble mumble… the specialist’s indistinct tones were drowning in background noise. At one point he even had a piece of paper covering his mouth, which meant that I wasn’t even able to observe any slight movement of his lips to gain some clue as to what he was saying. What if I was a lip-reader?! I imagined a page from a puzzle book; the kind where there is a line drawing where you have to circle what’s wrong with the picture. Well, if the aim of the puzzle was to highlight the aspects of this scenario that were making it a difficult environment for communication for someone with hearing loss, I’d be circling almost everything on the page.
I watched as the specialist quickly scanned the A4 booklet of notes that had been written about me, by his predecessors. I took a breath and focused on staying patient and prepared myself for the usual inquiries that would force me to relive the difficulties the past year had brought. Predictably I was soon asked the standard questions. When did it happen? Was it sudden? Have you tried a hearing aid? He told me that my right ear was functioning well. I assume he must have discounted the results of my speech recognition test, to come to this conclusion. He told me that the most important thing was to look after my right, only-functioning ear. He advised me on my diet. Since losing my hearing I have had various doctors and specialists suggest many things that I should not be eating or doing, in order to protect my remaining hearing. This time the list included, amongst many other things; no alcohol and no caffeine. I was told to avoid using certain types of hair dye, gold, and numerous types of antibiotics. There were countless other things on the list that could prove toxic to my ear, of which I had no idea what they were. I was to avoid loud music and high noise levels. My friend explained how I work in a school. The specialist said that a school environment was OK…I often think that people don’t realize how loud a classroom, or an infant school playground can be!
The specialist had a blunt manner. He seemed to be highly knowledgeable in issues regarding the ear; having all the textbook-theory knowledge, yet none of the practice. There was no evidence of him showing any understanding of how sudden hearing loss can affect someone’s ability to understand speech, not to mention their self-confidence or other associated emotional factors. He even managed to upset me; when he asked me how long I’d been living in Spain, and he commented on how my Spanish should be better after such an amount of time. Hmm, maybe after obviously being a consultant for such a long time, he should have more on an understanding of how to address patients with hearing loss?!… Nevertheless, as the consultation continued, my friend and I remained collected. We asked our questions, and finally, we started to form a new plan of action…
oh my goodness, you must have felt absolutely exhausted Carly. I don’t think that having a good ‘bed-side’ manner should be a bonus in the medical profession it should be a necessity! Is this going to be your specialist from now on? I really hope not. Sending much love to you xxx
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Thank you for reading. How are you?
Yes, unfortunately this will be my specialist from now on…I will just have to persevere, and make sure I ask him to repeat himself if i can’t hear him…and will try to stay calm 😉
I hope you are well. Lots of love. xxx
What a horrible experience for you and how frustrated you must have been. I really think during their medical training doctors and nurses should have sensitivity training to make them more aware of what the patients are experiencing.
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Yes, it was all very frustrating! It would be great if there was sensitivity training…I just can’t understand why someone would train to be a medical practitioner if they didn’t want to help their patients as much as possible (including making them feel at ease during consultations!)
Thank you as always for reading.
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Wow, Carly! This is going to be another of my long epistles so grab a cup of coffee.
First of all, it just doesn’t seem right that you had to be subjected to another round of frustrating tests. Are they not able to read their own records of your case? That’s ridiculous. I finally refused to take any more hearing tests. They’re too depressing. They must get paid by the test because they always want you to take another to “see how it’s changed.” I can tell them that without a test. It continues to get worse. I wish they would spend their time and energy working on a cure that restores hearing (like vision doctors who have basically performed miracles) instead of re-testing us just to tell us “Yep, you’re right, you can’t hear worth a crap!” Add in the rudeness you experienced and it becomes more like medieval torture!
And why in the world don’t ENT medical personnel understand that they, of all people, should be sensitive to avoiding ambient noises as much as possible? Talking to you while running a faucet or shuffling papers is inexcusable! I was at an ENT a couple of months ago to get some impacted wax removed. Though we were in a quiet room alone, he spoke in such muted tones and with his back to me, I had to ask him to repeat several times. What the hell!! I honestly think some of them do it to add a bit of fun to their boring day.
As for the lip reading, you are absolutely correct. If people speak in mumble phrases or at warp speed, it doesn’t help much to watch their mouth. Like you, I use that as a crutch to help me understand people. Last week we were at dinner with friends (an event I dread, but don’t want to disappoint my wife). I had to ask the woman friend to not hold her hand up to her mouth while talking because I was trying to read her lips. It was awkward but what the heck, if we don’t tell people how to help us we have no one to blame but ourselves. If she saw a person in a wheelchair trying to open a door she would be glad to help them anyway possible. Hearing impairment is no different, we need people’s help. I was able to participate in the dinner conversation for about the first 15 minutes but as the restaurant filled up and the noise level increased I had to excuse myself from participating.
Anyway, just wanted to commiserate with you and let you know you are right to vent about these incidents. I have no where near the seriousness of your situation, but we have to let other people know what this is like. Keep up the good fight!
Your pal, Al
P.S. Still hoping to meet you next year, but that situation in Catalonia is looking dicey, n’est ce pas?
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How are you? It’s great to hear from you!
It’s also always good to commiserate with you!… I can imagine you having a glass of wine for me 🙂
You’re right about all the testing. i hadn’t even thought about the reason for all their tests. Of course i would know if my hearing had got better in my deaf ear (it’s not like it can get any worse!) And, of course if I though it had improved in any way, I’d be immediately demanding to see someone at the hospital! We know our own bodies, much better than a specialist could ever do.
I think you are a star asking your friend to stop covering her mouth with her hand – good! i think people really aren’t aware of when they are doing things like this, and that can they can really hinder someones ability to converse, if they have a hearing loss. I also think that people, in general, want to try and help make things easier, they just don’t know how to, unless we tell them…
On the other hand, a specialist should be well aware of how to communicate with someone who has a hearing loss, and I can’t believe someone could specialize in ENT, and not be more understanding regarding someone having difficulty hearing in the presence of background noise. He even had a mini argument with me, saying that Spanish should be easier for me to hear – due to the number of vowel sounds – and this meant that I should be more fluent!
Anyway, at least I know what’s waiting for me, next time i have to go and see him!!
P.S. Yes, it will be great if we can meet! I still don’t know if i will be able to…but will let you know! And yes, the situation between Madrid and Barcelona feels very tense at the moment…
Take care Al,
Your blogging friend,
it never ceases to amaze me that someone who works with people with hearing loss can be so clueless as to how to communicate with them. I mean, really??
the fact that your consultation wasn’t in a private room is horrible.
a complete breach of privacy.
The fact that he was rude to you, is unforgivable.
Of course you haven’t developed your Spanish language skills as quickly as you might have, but you now have hearing loss. it’s pretty hard to learn a language when you can’t hear it. pfft!
The battery of one of my CI’s died early recently and I was suddenly without any hearing on one side. that’s really hard. I have difficulties with hearing any way, but when I go down to just one ear, it’s very, very hard.
I can’t imagine that on top of hyperacusis.
I’m proud of you for how well you are handling your hearing loss, and all the medical hoops you’ve had to jump through.
You are a warrior.
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How are you?
It’s so lovely to hear from you 🙂
Exactly…learning a language is not easy with a hearing loss!…All the situations where I used to listen to Spanish people’s conversation, such as on the Metro, in order to practise my listening skills – I can’t do this anymore… Also, it is very difficult to hear in any kind of conversation!
Anyway, thanks for the warrior comment, it made me smile 🙂 You too are a true warrior Wendy (Warrior Wendy 😉 )
Thank you as always for commenting, and for showing your understanding of my situation – it’s good to communicate with others who have similar experiences.
I hope you are feeling well.
Like everyone else I was shocked to read your account of this consultation. I don’t know how you kept your cool. It was great to read that you managed to keep calm and collected and work out the next steps and I can’t wait to hear about your new plan of action. Meanwhile, how are you doing? How are you feeling? Are you back at the school at all?
Sending lots of love and hugs
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Hello Vera. Thank you for reading and for your comment 🙂 I am doing fine. I am working as a teaching assistant six hours a day (I had to resign from my full time teaching post, as I couldn’t bear the amount of time spent in the classroom). My days are difficult, as my hears and head are in constant pain from the noise, and i am very tired! But, I am happy to be working 🙂
Looking forward to reading about your cochlear implant!
Lots of love