Article contributed by Rachel Clare
A Rude Awakening
I awoke on the morning of my 14th birthday and immediately knew that something was wrong. The room spun as I sat up and I realised that I couldn’t really hear out of my right ear. There was also a persistent buzzing sound with intermittent ringing noises. As I was normally fit and healthy, we assumed that blocked ear wax was the cause. Birthday present opening was undertaken, a GP appointment made for ear syringing and I, slightly drunkenly, wove my way up the path to school.
A couple of days later I attended the GP appointment and from then on things happened very quickly. An ear examination revealed no blockage and, with no other apparent cause for my sudden hearing loss, I found myself being taken straight to the hospital to see the ENT team. They were unsure of the cause but one of the possibilities was damage caused by an unknown viral infection. I was given anti-viral drugs and a high dose of steroids, with the option to stay in hospital and have these intravenously or to go home and be woken through the night to take the medication. As I had a birthday meal with friends planned that weekend, my dedicated parents agreed to take on the responsibility of medication administration with my Mum waking me every night to ply me with more tablets!
My head MRI was normal and although a slight amount of hearing appeared to return after the drug regime finished, it appeared that the damage was permanent, the loss was severe, and the cause unknown.
We suspect now that my hearing loss may have been caused by an adverse reaction to the diphtheria/tetanus/pertussis/polio booster vaccine that I had received the day before waking with hearing loss. There is no way of proving this, but we know of several other young people who had the vaccine at the same time as me at the same GP surgery who were also unwell afterwards. An MHRA yellow card was completed to report a potential adverse reaction to the vaccination. I feel it important to point out at this stage that I am still pro-vaccination. The diseases that the vaccine protects me from are life-threatening, and even if I had known what may happen to my hearing (which may not even be related) I would absolutely make the same decision again to still be vaccinated.
Frustrations, Challenges and Positives
Growing up with hearing loss, I was fortunate that my school were supportive and that I was academically able, so don’t feel that my education was affected at all. I did find the foreign language listening exams (played from a tape recording!) quite challenging though and I often sat near the front of the classroom. When I went into the sixth form, I was visited by a support worker for deaf children in schools, who undertook informal hearing tests, checked I was coping and was able to make recommendations to myself and the teaching staff regarding any potential improvements, such as my position in the classroom.
I initially used to get very frustrated with the hearing loss, particularly when I had to ask people to repeat themselves multiple times. Now, at the age of 35, I still hate it when I ask people to repeat themselves and they say “oh, don’t worry” – it makes me so cross! Generally, though I get less frustrated now and am able to laugh at myself when I mishear something which completely changes the meaning of a conversation! My family notice when my hearing is worse (e.g. when I have a slight cold) as I get more grumpy and I miss conversation without realising. They often pick up on the worsening hearing before I do!
It is good to discover the positives related to hearing loss too. If I am sharing a noisy room overnight, I can lie on my good ear and get to sleep more quickly! It has also given me a greater insight into the challenges faced by D/deaf people. I would like to think that I communicate better now, ensuring that I am facing the person, not turning away when I am speaking and not shouting/over-enunciating words to try and ‘help’ someone understand me. I was inspired to learn some basic British Sign Language and have since used this to support people in my work as a nurse.
A Slight Change of Tone
Music has always been a big part of my life and I sing and play the clarinet and piano. When my hearing loss first occurred, it changed how I heard the pitch of a note. I would hear the note at approximately a quarter of a tone flatter than it actually was. As I am sure you can imagine, this resulted in some quite painful results when I sang what I was hearing against any form of accompaniment!
I learned to stand with my ‘good ear’ pointing towards the accompanist or the people that I was singing with and over time I learned to compensate and my brain ‘re-trained’ to help me sing in key again. It did really knock my confidence with harmonisation and singing solo, but this has steadily grown again over time. I still notice the difference in perceived pitch when I dry my hair with a hairdryer – the tone sounds lower in my right ear than in my left.
The Sound of Silence
Although the hearing loss was a challenge to adapt to, it was the ever-present tinnitus that initially distressed me the most. My tinnitus is a constant buzzing sound. The best way I have ever found to describe it is if you gently rub your palm over a sheet of paper – that’s the sound that I hear all the time. Occasionally I also hear a high-pitched ringing sound too, but those episodes are few and far between now. Over time I have learned to accept the tinnitus and not let it distress me, as this definitely does increase its volume. Occasionally I feel sad that I will never hear true silence again, but then I think, “Well, who does really want to hear that?” and remember that hearing the wind in the trees or the sound of the sea (all of which help to mask the tinnitus) are far more enjoyable experiences than craving a vacuum of silence, which may seem lonely and isolating.
To Aid or Not to Aid?
A few years after my hearing loss, I experimented with a hearing aid. This initially worked reasonably well for me, particularly during my years of study at school and university. However, the designs of the aids changed over time, and I was no longer able to have a moulded aid. I was reassured that the new style of hearing aid would be better for my hearing loss and could be programmed to help amplify sound in the frequencies where I had lost the most hearing but not over-amplify the other frequencies. Whilst this was excellent in theory, I struggled with the design of the hearing aid and found that I had awful feedback noise. I couldn’t put my hood up or hug anyone without the aid whistling loudly, no matter how many times I positioned and re-positioned it in my ear. In the end, the hassle was not worth the benefit, and I am now aid-less, very happy and don’t think that I miss out on that much!
My most entertaining hearing aid experience was using the loop system in the cinema (which incidentally really does help in places such as churches where there is a lot of echo or background noise) and hearing the soundtrack to the film in the next door cinema – clearly, there was a slight connection error!
Challenges still do crop up every now and then. I tend to mishear people in noisy environments – I find it difficult to hold a conversation in a very crowded restaurant or to order at a bar. It’s not always noisy environments though, some banks are really difficult to access because the cashier is behind a screen, and this distorts their speech. The COVID pandemic presented a whole new world of challenges. You don’t realise how much you subconsciously rely on lip-reading until you cannot see people’s mouths. Masks also muffle speech and generally make conversation a lot more challenging. Add in your own hat/visor/hood (I am a nurse) and communication is almost impossible!
About nursing, there have been fairly few challenges. I was a little concerned about using a stethoscope, but this is not overly problematic for me, particularly as the hearing in my other ear is excellent. I have very little directional hearing now so my family, friends and colleagues know that if they call my name, I will probably turn 360 degrees before I work out where the person is who is calling me! I adapted quite quickly to only holding the phone to my left ear, probably helped by the fact that I am left-handed. It does make it a little challenging if I am trying to write notes whilst on the phone, or if someone is trying to whisper something to me at the same time!
On the subject of whispering, I have to think about where I sit in the cinema or theatre if the person next to me may want to whisper to me, otherwise, I have to keep turning my head all the time to present them with the ‘good ear’.
In general, though, on a day-to-day basis, I no longer notice or remember that I have hearing loss. Background noise helps to mask the tinnitus and I therefore often don’t notice it unless it is quiet, or I am specifically thinking about it. I am living life to the full and a slightly dodgy audiogram and a bit of buzzing are not going to get in the way of that!