It was the most momentous few minutes of my life and I missed it. On October 10, 2002, my wedding day, I stood before the registrar and couldn’t hear a peep. When he asked, ‘Do you take this man?’ I replied with one word that is now legendary among family and friends: ‘Ay?’
I could feel the annoyance rising in my about-to-be husband. He had endured, with little good grace, three years of me missing everything. Of repetition. Of explanation. Of ‘Ay?’
This was the most humiliating of many episodes when, having been hard of hearing from birth, I have been made fun of, thought stupid, rude, useless. Occasionally, I can laugh about it. At a Vanity Fair post-Oscars party I was talking to John Travolta and thought he asked: ‘Do you think I’m short?’ To which I replied sympathetically: ‘No! You’re normal size – I’m in high heels.’
Like most men I’ve met at parties, he reeled away, exasperated. Only on the plane home did I work out that he’d actually said: ‘Do you think we should abort?’ (I’d been getting on his nerves, given the background noise.)
More often, hearing loss isn’t funny. It’s the one disability that’s still mocked. You’d be amazed how many people, when you say you’re deaf, just keep talking. At a till in the Co-op, I can never hear the total, and ask the assistant to tilt the screen so I can see it. I’ve had more than one eye roll.
‘In times of stress, such as walking down the aisle or having lunch with someone important, I cannot hear a thing,’ Liz Jones writes
In Somalia, reporting on a famine, I needed two translators: one into English, then another from the heavily accented translation into something I could follow. The male photographer laughed: ‘You’re useless.’
When I lived in Somerset, a local woman wrote a piece in The Telegraph saying I snubbed her when she said hello in a pub. I didn’t hear you – I’m deaf!
Being unable to hear, or ‘stone deaf’ as a recent date called me, saying he and the waitress had shared jokes about me, can be annoying (I never hear the car beep to warn I’ve left lights on; subtitled screenings in cinemas are as rare as snow leopards) but also life-threatening. I visited a car-free village in Switzerland – great, I won’t be worried about being run over! I left the hotel and – bam! – a buggy carrying suitcases missed me by a whisker. Electric cars are a menace.
I’ve just read a moving memoir by the poet Raymond Antrobus. It’s called The Quiet Ear, and he writes about being ‘not quite deaf enough’. When he was born in 1986, the midwife clicked her fingers by each ear, pronouncing him normal. No other test was done, so he grew up unsupported. He never heard a phone ring.
This was doubtless the case when I was born in 1958. A recent DNA test confirmed I carry the GJB2 gene – variants of it are the most common cause of congenital, non-syndromic hearing loss – meaning a near silent world was written into my fate long before I was born. I also had measles when young, which probably impaired the functioning of the fine hair cells in my inner ear, known as the cochlea or organ of hearing.
I grew up, undiagnosed. I thought it normal never knowing what was going on. I said little, in case it was the wrong thing.
I was one of seven, so I imagine my parents were too busy to notice. In lessons I barely heard a word. I learned to read before starting primary school and spent all my time buried in a book: the written word was a life raft.
Antrobus talks of his difference being an advantage, and I agree. The deaf try harder, we pay attention, we concentrate. His book also told me something I didn’t know, which is that deaf Americans and deaf Brits can’t communicate, as the BSL (British Sign Language) alphabet is on two hands and the ASL (American Sign Language) is on one. I’ve never learned either, as I don’t know anyone who would understand it.
I only had an inkling I might be abnormal when I watched the 1952 film Mandy, about a family’s struggle to give their deaf daughter a better life. She would learn letters by holding her lips to a balloon and feeling the vibrations.
And yet being hard of hearing didn’t impact my career as a journalist: I hid it. In ideas meetings and, as an editor, board meetings, I employed an assistant to sit by my side and scribble down important points. When interviewing a celebrity, I made sure the venue was silent. I would lip-read and record what was said, then pay someone to transcribe every word.
My impairment made men mock me or, like John Travolta, turn away. It was a vicious circle: the more anxious I became (of missing an announcement about a flight, say), the more my brain shut down my ability to hear. In times of stress, such as walking down the aisle or having lunch with someone important, I cannot hear a thing.
So why didn’t I seek help? According to Robert Beiny, an audiologist based in Hertfordshire, 70 per cent of those with hearing loss in the UK don’t do anything about it due to shame. Untreated, hearing gets worse. I didn’t want the stigma of hearing aids, of being thought old (more than half the over-55 population experience hearing loss, according to the Royal National Institute For Deaf People). I finally gave in and got my first hearing aids in 2018, when I was 60, because I owned an ex-racehorse and riding along country lanes, despite my fluoro vest saying Deaf Rider, was too dangerous.
The hearing aids needed batteries, so I felt like Mrs Richards in Fawlty Towers: ‘I haven’t got it turned on. The battery runs down.’ I still couldn’t hear someone if I couldn’t see their face and could no longer use the phone. Like many deaf people, I became isolated, refusing invitations. I’m reminded of the quote by Helen Keller, who became deaf and blind at 19 months: ‘When you lose your sight, you lose contact with things. When you lose your hearing, you lose contact with people.’ Hearing loss isn’t all bad – arguments and insults tend to go over my poor, quiet head and a noisy neighbourhood party can be blotted out entirely.
The final straw for my old hearing aids was when I was having breakfast at a hotel and suddenly everyone started to panic, leaping up to congregate outside. ‘What’s going on?’ I asked the waitress.
‘The fire alarm has gone off.’
My hands shot to my ears.
Oh no. My hearing aids were whistling. It was too embarrassing for words.
Since I got my battery-powered hearing aids, artificial intelligence has begun transforming audiology and I was recently persuaded by YOU’s deputy editor Lindsay to seek the latest models on the market.
She arranged an appointment at Harley Street Hearing, London’s largest independent audiology clinic, where I met Romy Cohen, an audiologist and clinical lead. Surrounded by computers and gadgets, she assured me that hearing technology has indeed come on over the years, particularly in the past 12 months. Turns out I’m driving a Beetle when I could be in a Ferrari.
Romy took my medical history and we discussed the types of environments I spend time in, and my difficulties. She examined my ears with a microscope. There was some wax in my right ear (hearing aids, a foreign object, encourage its production), which she gently removed with microsuction.
A test called tympanometry, which assesses the health of the middle ear, showed my ear drums are intact, healthy and move normally. I have ‘intact tympanic membranes’. The pressure in my middle ears is normal, which points to the damage being in the cochlea.
I then sat in a soundproof booth wearing headphones. ‘I feel like Cilla Black, about to record Anyone Who Had A Heart.’ Romy laughed. A lot of her work at Harley Street Hearing is done with musicians who want to prolong their career or need to protect their ears. I was played lots of beeps. As soon as I heard a noise, I had to press a button. Next, I was asked to listen to words and repeat them but, as there were no visual clues, I ended up guessing.
When I emerged, I was shown the results. My diagnosis is ‘a moderate to profound, sensorineural hearing loss’, meaning it is the cochlea that is affected, as opposed to the outer or middle ear being the source of loss.
My Speech Reception Threshold (SRT) testing scored 80 dB (decibels) in the right ear and 94 dB in the left ear, showing poorer speech scores than expected – a person with normal hearing can register a sound at 20 dB. These scores mean that I can only get around 50 per cent of words correct at these high volumes. I struggle to hear high-pitched sounds or consonants such as sch, s, th.
So no birdsong, no alarms.
The Phonak Infinio Sphere i90 hearing aids cost £5,240 for the pair, which is a one-off payment
All I saw on the graph were two letters, again and again: ‘NR’, meaning, ‘No response.’ The story of my life.
I told Romy I’d heard of a new type of aid that is placed deep in the ear, so is invisible, and doesn’t need to be removed at night.
‘That’s the Phonak Lyric,’ she said. Then the bad news: ‘Based on the level of your hearing loss, the Lyric may not be suitable. It’s designed for individuals with milder hearing loss. It only has one microphone and may not offer as much benefit as a digital aid, which has multiple microphones and helps manage background noise.’ The Lyric typically needs to be professionally removed and replaced by an audiologist every two months. The cost? A monthly subscription, amounting to £3,360 a year for the pair. That’s OK, I told Romy, I find the thought of always being ‘on’ challenging. I like being able to power down, like a robot. Noise is tiring!
Instead, the hearing aids that were recommended for me were the Phonak Infinio Sphere i90.
To ensure they fitted snugly, impressions of my ears were taken – my aids would be couture – and after two weeks, I returned to have them fitted.
Romy made use of Real Ear Measurements (REMs) during the fitting as a way to make sure the hearing aids do their job correctly in my ears.
Everyone’s ear shape is different, and that affects how sound travels to the eardrum. REMs allowed Romy to fine-tune my hearing aids so the amplification matches what I actually need.
The Phonak app was installed on my phone enabling me to adjust volume and settings and find them if they get lost. Mostly, though, the aids are automatic. I can answer my phone by tapping a button behind my ear and speaking, as the mic picks up my voice even if my mobile is in my pocket: a huge safety bonus if you live in a city. The aids will also gather data on my usage to be used at follow-up appointments to make tweaks.
It will take time for my brain to adjust, and for me to get used to the sound of my own voice (awful!).
On the train home, everything seemed loud (a man a few seats along was eating crisps), and I still couldn’t make head nor tail of the travel announcements.
I’m hoping being able to hear well will help with my anxiety and make me more sociable. In fact, a couple of days later I went to a noisy restaurant – hard floor, packed with families – and the background clattering seemed less assaulting. I could hear Nic, my assistant, arguing with the waitress about the fact her dog was on a chair. Joy!
I’ve also started listening to music. It’s no longer just noise: I can hear lyrics! Rose Ayling-Ellis, the deaf actress who won Strictly, can also hear some sound: she just can’t fine-tune it. The moment the music went silent for a few seconds, as she danced with her partner, moved me to tears: ‘Yes, finally. That’s what my world is like!’
This morning, ears in, I hear a blackbird singing his heart out. The best gift I could possibly receive, apart from being asked to dance and accepting gracefully. Tony Manero, are you listening?
harleysthearing.co.uk
