Dr Karen Kendel-Smith, 54, is a former university lecturer. She lives in London with husband Russell, 63, also a lecturer and their daughter Samantha, 14. One morning in 2016, Karen woke up deaf in one ear and still has 95% hearing loss today. Here’s her story.
Not long ago I was at a college reunion, catching up with a couple of friends I hadn’t seen for several years. It was great to see them again but as it grew darker and the music grew louder, I found I was getting exhausted. I had to leave early.
The next morning, I woke up to find myself with almost no hearing in my left ear. I’ve been 95% deaf in that ear ever since.
While some people say, “Oh, it’s only one ear, you’ve still got your hearing,” they really underestimate the impact that losing half your hearing can have on your life. Everything from socialising to getting around by myself has changed irrevocably.
I was 46 and staying with my parents in Sussex for a couple of nights when it happened. I’d gone to bed feeling perfectly well, but when I woke up on Saturday morning I could hear a strange high-pitched buzzing in my left ear, almost like I’d been to a loud gig the night before.
I wasn’t too concerned. It felt slightly odd but I’d been in the sea a couple of days earlier and I wondered if maybe a wave had smashed me on the side of the head or water had got in and damaged the ear slightly.
There was no pain at all, just a feeling of ‘fullness’. I turned on the radio and covered my right ‘good’ ear and all I could hear was a very muffled sound.
“If it doesn’t go away by Monday, I’ll ring the doctor,” I said to my parents and my daughter. Which is exactly what I did when I returned home a couple of days later and there had been no change to my hearing.
I went to bed feeling perfectly well, but when I woke up on Saturday morning I could hear a strange high-pitched buzzing in my left ear…
I booked myself into the earliest slot in three weeks’ time. Sudden hearing loss is now classed as a medical emergency and if I’d known how serious it was, I would have gone to an urgent treatment centre.
Three weeks passed and I went to see my GP who did a hearing test. My hearing had been perfect when I’d had a regular hearing test only a few years earlier. But this time, the GP agreed that my hearing loss was severe and they would refer me to Kingston Hospital.
By now, I was becoming more concerned that I’d have to live like this forever but I hoped the hospital would be able to come up with a solution.
In hospital, the doctors agreed I should probably have an MRI to rule out a brain tumour. Of course, those words make anyone go cold but I was reassured that most tumours are benign. At least we’d have an answer for why I’d lost my hearing.
I turned on the radio and covered my right ‘good’ ear and all I could hear was a very muffled sound.
But two MRIs showed no tumour. It was relief but it also meant that there was no explicable reason for the hearing loss either. I wondered if it could have been caused by being in the sea or even my then six-year-old daughter shouting too loudly in my ear.
The doctors said it was more likely to have been a virus that had somehow attacked the ear. It was perplexing. I hadn’t felt ill at all at the time but I was told that if I’d had steroids within a few days of going deaf, it may well have saved my hearing.
Of course, it was a huge shock to learn that I’d probably lost my hearing for good. But by then, I’d had several weeks to adapt to my new ‘normal’ though I had no idea of the impact at that time.
The hospital fitted me with a digital hearing aid, which amplified the hearing slightly in my ear. But hearing aids don’t replicate real sound. I describe it as though I’m listening to a cheap, tinny radio.
I still have constant buzzing in my ears too. Known as tinnitus, I was told that it may get better – or worse. It’s a high-pitched tone, like when a loud bang has gone off nearby or you’ve been to a loud concert.
People ask how I can bear it but I’ve grown used to it now and if anything, I feel lucky that it’s nothing more intrusive or loud. Tinnitus can make sufferers’ lives desperate and some are even suicidal over the constant noise.
Tinnitus can make sufferers’ lives desperate and some are even suicidal over the constant noise.
But as I was adapting to my hearing loss and tinnitus, worse was to follow. A few months later, I developed vertigo, something that is seen in around a fifth of patients with hearing loss. I noticed that I was dropping forward as I was walking down the street and found that I had to hold onto both sides of the stairs because it felt like the floor was coming up to meet me.
I tried physiotherapy to help me rebalance the tiny calcium crystals in my ear (also known as ‘otoconia’) but it didn’t really help me. I’ve had many falls since, sometimes into the road and I’ve injured myself several times, once really hurting my knee, so I really do have to be careful and watch my footing.
Two years ago I had to relinquish my driving licence as a result of the vertigo as it can make me very dizzy very suddenly. It was hard to give up my independence because even travelling on the bus can be difficult – especially if I’m standing up and holding onto a rail as I can wobble about and look drunk.
I really need a seat on public transport as I find it very difficult to move around and stand up on a moving vehicle. Strangely, I’m ok on a bike and recently my daughter and I went on a cruise where my daughter felt wobbly on the waves and I was absolutely fine. “This is what it’s like for me all the time!” I told her.
I developed vertigo, something that is seen in around a fifth of patients with hearing loss. I noticed that I was dropping forward as I was walking down the street.
Today, I try to look on my situation with as much optimism as possible because there are worse things that could happen to me. But I can’t deny that there are some things I miss from my old life with full hearing. Going to the cinema or theatre – two things I love – are impossible without subtitles. I have them on the television constantly at home.
Socialising – like at my college reunion – can be really tricky and I prefer to meet in quiet places without any background noise and only one or two people talking. I can’t hear the doorbell ring but I have trained my little chihuahua Honey to bark at me if someone is at the door. I’ve also trained her to wake up my teenage daughter, which can come in very handy!
One particular thing I find annoying is if I’ve told someone I’m deaf and they still treat me as if I can hear. For instance, if I’m in a hospital waiting room and someone calls my name from round a corner, I can’t hear them.
Ideally I need to see people’s mouths as they are talking to me so they need to be facing me and speak clearly. Lip reading and observing non-verbal signals like gestures and facial expressions help me to communicate but my brain finds it difficult to process hearing from one good side and one with severe hearing loss.
On the bright side, I now sleep so much better because I lie with my good ear on the pillow and don’t get disturbed by any noise.
But on the bright side, I now sleep so much better because I lie with my good ear on the pillow and don’t get disturbed by any noise.
Most people are very understanding and patient with me, particularly my husband Russell who must tire of me asking him to repeat himself all the time. My daughter is a little less so, but she’s only 14.
My world has changed in that I now take more notice of visual stimuli rather than sounds. I can’t hear traffic or bikes when they are coming up behind me so I have to be vigilant to what’s around me.
My reason for sharing my story is that I want more people to be aware that if they do suddenly lose their hearing, it’s vital to get to the doctors as quickly as possible because steroids might just save their hearing.
My GP apologised and said that if we’d caught it earlier, there’s a chance I could still hear.
My GP actually apologised and said that if we’d caught it earlier, there’s a chance I could still hear. I can’t blame them for my hearing loss and there’s no guarantee it would have been saved but I don’t want others to be in the same situation and miss the opportunity.
My consultants at the hospital say they are seeing more and more cases of people losing their hearing suddenly and it may be down to Covid and other viruses, so it’s essential to monitor your hearing and if you experience sudden hearing loss ask to be seen as a matter of urgency.
For support and advice, visit the British Deaf Association. If you are experiencing suicidal feelings, remember you are not alone and you can contact The Samaritans any time, day or night on 116 123. You can also email the charity on jo@samaritans.org.
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