Fierce optimism: Joanne with fiance Steve White
Joanne Milne had never heard a baby’s giggle until she reached the age of 40 — and when she did she was totally entranced.
‘It’s lovely, infectious and it makes you want to laugh yourself, so the happiness carries on and on,’ she says. ‘It’s my favourite sound ever and I felt quite emotional when I first heard it. Soon I’ll be hearing it a lot more. Then there will be first words to look forward to as well.’
Joanne is deaf and until three years ago she lived in profound silence. Then she was fitted with cochlear implants, which bypass damaged portions of the ear to stimulate the auditory nerve directly, sending signals to the brain that it recognises as sound. When the implants were first turned on, her mum captured the moment on a video which was posted on the internet.
To date, 12 million people worldwide have watched her emotional reaction as her world erupted into a cacophony of noise — birdsong, roaring traffic, chattering voices — and, overwhelmed by the unfamiliarity and sheer volume and variety of it, she sobbed tears of joy.
Now it won’t be long before new sounds are added to the library filed in her brain: her own newborn’s tears, his infant chuckle.
At 43, after she had long assumed she would never become a mum, Joanne is pregnant with a baby boy, due at the end of October.
When she and fiance Steve White met by chance in summer last year, it was love at first sight. By January, paramedic Steve, 43, had proposed — and then came the thrilling news that Joanne was expecting.
‘By the time I got to 40, I didn’t think I’d meet anyone I wanted to marry,’ she says. ‘I didn’t realise Steve was round the corner. But there he was!’
She smiles. ‘We both knew pretty much straightaway that we wanted to be together for ever. I wasn’t worrying, “Will he call?” I just felt so comfortable and relaxed with him. I’ve had relationships before but nothing like this one. I didn’t have to worry about being deaf. You just know when it’s right, don’t you?
‘We knew, too, that we wanted children, but this little voice at the back of my mind was saying, “You’re getting older.” But it’s happened quickly and we’re so delighted and excited.
‘I took a home pregnancy test and, when Steve came in from work, I showed him the positive result. No words were needed. We just hugged.’ For Joanne, motherhood will bring both joys and challenges. She has Usher Syndrome, which is why she was born deaf, and although she is now able to hear when wearing her implants, another sense is fading: since her late 20s the rare genetic condition has been progressively robbing her of sight.
She is registered blind, her peripheral vision is non-existent and her field of vision is narrow: she views the world as if through a letterbox. Her sight will definitely decline — her son’s face will fade as the years pass. But she refuses to dwell on the negative.
‘I’m on my life’s journey with Steve now, so whatever lies ahead we’ll face together,’ she says. ‘We’ll get through anything knowing we have each other, and although my sight will deteriorate I won’t be totally blind. You have to hang on to that.
‘I’ll treasure the sight of our baby’s face. I’ll make memories, but I won’t waste time worrying about how bad it’s going to get. When I was 16, the doctor said I’d be totally blind by the age of 30. I’m not.
‘So I don’t think about the day when I won’t be able to see our son. You can get very low if you take that attitude, so I intend to grab life and squeeze every drop of joy out of it because while you’re worrying, time is ticking away.
Left: Wow! Jo’s implants are turned on. Right: She is stunned as the sounds amaze her
‘A few years ago, it became an obsession, trying to fill my mind with pictures and memories, and although of course I still do that — we all do — you have to enjoy the moment.
‘So I try to be positive. I don’t say I’m disabled because I’ve never liked labels and stereotypes. I know I’ll cope.’
‘My night vision is poor so I’ll never be good on Bonfire Nights, but I’ll focus on summer picnics,’ she adds with a smile. ‘And there are some things I’ll never be able to do. I had to give up driving when I was 29 and I walk unfamiliar routes with a white cane, but I’ll concentrate on everything I can do, knowing Steve is always looking out for me.’
Theirs is a partnership of equals. Joanne, self-sufficient for so long — she was living alone when she met Steve and works full-time in PR for a charity, The Hearing Fund UK — is resolutely independent.
Left: She cries tears of joy. Right: Jo is overwhelmed
When she was first registered blind, she was allocated a guide dog called Matt, but decided others’ needs were greater and he was given to someone with a more severe visual impairment.
Supported by a close-knit and loving family — her dad Al, 74, is a retired cable contractor, while mum Ann, 73, raised their three daughters — Joanne had speech therapy from the age of two and learned to lip read early in life.
She relied solely on this skill before her cochlear implants were fitted, and is so adept at it that Steve sometimes finds himself forgetting she is deaf. ‘Only on occasions do I catch myself realising “Jo can hardly see” because she does so well at getting about,’ he says.
He, too, is full of optimism. ‘I’ll do whatever I can. It’s just a continuation of loving her, learning about her condition and how best I can support her.
‘We went out for a family meal on my birthday; it was dark and crowded and Jo missed a step and stumbled because I’d forgotten to mention it was there. I was mortified. To family and old friends it’s second nature to say “mind the step”. I’m learning from this sort of thing every day.
‘It’s quickly becoming clear to me, too, that Jo is really adept at hearing certain pitches of sound, while others are more difficult. My voice is quite low and I have to raise the tone a little so her implants pick it up. I’m also learning which noises grate: the metallic sound of a teaspoon in a cup really cuts her in two.’
At 43, after she had long assumed she would never become a mum, Joanne is pregnant with a baby boy, due at the end of October
When Joanne found she was pregnant, she and Steve, who is divorced with three children from an earlier marriage, opted not to have genetic tests to find out if their baby was likely to inherit her condition. Usher Syndrome is so rare — only 400,000 people in the world have it — that the chances of their son inheriting it are extremely remote.
‘But in the unlikely event that our child has a sensory loss, we’ll deal with it,’ says Joanne. ‘Life comes with challenges. There is no such thing as a perfect or normal child. What makes the world beautiful is our differences.
‘We’ll be very proud of our son whether he’s deaf or not — and I’ll teach him British Sign Language from an early age.’
An afternoon spent with Joanne and Steve is uplifting. Both have unquenchable optimism and they are obviously deeply in love.
They met by chance in July last year in a cosy pub near Joanne’s former home in Newcastle. She was about to go home after a quick early evening drink with girlfriends when Steve, on his way to a mate’s house, popped in.
‘I saw her and thought, “Blimey!”’ he recalls. Tall, blonde and striking, she was wearing a vintage blue polka-dot tea dress and red heels. ‘I thought, “I have to go over and talk to her.” I couldn’t leave without saying something.’
Joanne had likewise spotted the tall, dark, bearded stranger with chocolate brown eyes and a winning smile.
‘I just knew something was going to happen,’ she remembers. ‘And when he came over and we got talking, it was as if we’d known each other for ever. I told him about my cochlear implants . . .’
‘And then the penny dropped,’ puts in Steve. ‘I remembered listening to Jo on the radio.’
After her implants were switched on in March 2014, Joanne was invited on Lauren Laverne’s BBC Radio 6 music show. There she heard music for the first time; a playlist compiled by a friend with a tune for every year of her life.
‘I remember thinking, “What an incredible story,” ’ says Steve. ‘Jo had no previous music memory. I’d listened to my mum’s Beatles records and my dad’s Rolling Stones songs. She didn’t have any musical heritage.’
Jo has Usher Syndrome, which is why she was born deaf, and although she is now able to hear when wearing her implants, another sense is fading: since her late 20s the rare genetic condition has been progressively robbing her of sight. Pictured: Jo with her cochlear implants
Joanne recalls her feelings after that first meeting: ‘I felt comfortable with Steve. He was thoughtful, a good conversationalist and he had a good heart. He was also open-minded about disability.
‘Naturally, I was apprehensive, but he took those feelings away. That was his big quality. I could be myself and there was nothing I was going to hide. And of course I thought he was handsome, too!’
Three hours seemed to pass in the blink of an eye, Steve recalls. ‘I knew straightaway we had something special. The feeling is unmistakable, isn’t it?’
‘We’re happier now than we were in our 20s,’ adds Jo. ‘Loving Steve is just so enjoyable. We don’t think “I’ve got to act like this or be like that.” You’re just yourself.’
‘That’s the best thing,’ jokes Steve. ‘We can be as weird as we like together and it’s just fine!’
Quickly they became inseparable. Joanne sold her house and now they have their own home together in Durham. Steve is helping add to her sound archive, which grows daily. When she hears a new one, he identifies it. Her aural library of birdsong is now quite encyclopaedic.
‘Before I could hear I thought all birds had the same song,’ she says. ‘Now I recognise the call of a chiff-chaff and can identify a blackbird singing its evening song.’
Steve has also introduced her to classical music. ‘We had an evening of Beethoven and Mahler and at the end I was quite exhausted. It’s wonderful and overwhelming,’ says Joanne. ‘The sensation makes your nerves tingle and each tiny hair stand on end.’
With Steve as her guide, they go hiking — and it was on a walk in the Pennines that he proposed.
‘We often go walking in quite rugged terrain because I won’t be able to do it for ever as my sight gets worse,’ she says.
‘On this particular day it was icy and we were wrapped up in winter woollies. Steve wanted to guide me across some slippery rocks. I thought, “There’s no way we’ll get across there”, but he gave me a helping hand and we walked right behind a waterfall.
‘I remember the sound of the crashing water. I hadn’t realised before that water made a noise at all. Then he got down on one knee and asked me to marry him.’
When she was first registered blind, she was allocated a guide dog called Matt, but decided others’ needs were greater and he was given to someone with a more severe visual impairment. Pictured: Jo with the remote that controls the volume of her hearing aids
She beams as she shows me her white gold and topaz vintage engagement ring. Next year a summer wedding is planned; before that, of course, they have their baby to look forward to.
At Joanne’s 20-week scan they learned he was a boy. ‘There was no hiding the fact,’ laughs Steve. ‘So our decision about knowing the sex was made for us.’
Joanne’s pregnancy has gone without a hitch and technology will help her cope once the baby is born. At night she takes out her implants and retreats once more into silence — so when Steve is working nights, a wristband that vibrates in response to sound will alert her when her son is crying.
She will also set an alarm to vibrate when a night feed is due.
After the birth she will return to work part-time, when she will be fronting an anti-bullying campaign that she will take to schools nationwide.
Their little boy will be immersed in love: both their families will pitch in to help look after him.
‘We have lots of support around us — two sets of grandparents and three aunties, plus a network of good friends,’ she says.
She remains resolutely upbeat and undaunted. To Joanne Milne, deafness and fading sight are minor encumbrances and Steve, of course, is the main reason why she looks forward in joy and hope.
‘I’m very proud of him and of the job he does as a paramedic,’ she says. ‘His compassion and kindness are two qualities that attracted me to him.
‘It’s very important, particularly with the pressures of his job, that he comes back to a happy home filled with love, serenity and laughter, and I’ll do everything in my power to ensure that he does.
‘I don’t worry about how I’ll cope with motherhood. I think our little boy is going to be very lucky indeed.’
The Hearing Fund UK’s #Nice2bNice anti-bullying campaign will tour UK schools from February. Follow on social media @hearing_fundUK.