Meet The Deaf Viral Star Who Regained Her Hearing, But Is Now Going Blind

    Last March, a video of Jo Milne hearing for the first time after cochlear implant surgery went viral, receiving millions of views. Now, a year later, she's still discovering a world of sound – but she's also going blind. "Without a doubt, I'd give my cochlear implants back if I could keep my sight," she says.

    This is Jo Milne from Gateshead in Tyne and Wear.

    Milne was diagnosed as being profoundly deaf at 16 months old, and lived her life – very contentedly – as a deaf person until last February, when, just shy of her 40th birthday, she underwent cochlear implant surgery so that she could hear for the first time.

    She had the operation at Queen Elizabeth Hospital, Birmingham, last February, and a month later, the implants were switched on.

    The emotional video of Milne's switch-on, filmed by her mum, Ann, quickly went viral, and has been viewed almost 3 million times.

    View this video on YouTube

    youtube.com

    Google even included the video in a compilation clip of 2014's most inspiring moments that has been viewed 32 million times.

    View this video on YouTube

    youtube.com

    Milne has had an incredible year of discovering a world of sound – from hearing her family's voices and listening to music for the first time to registering the rustle of the wind and the sound of tea being poured into a cup.

    But it has also been a bittersweet time – because Milne is also registered blind.

    She suffers from a rare condition called Usher syndrome, which causes both hearing loss and visual impairment.

    Milne has now written a book, entitled Breaking the Silence, and she spoke to BuzzFeed News about her extraordinary life, starting with why she thinks her video made such an impact.

    "I think it just caused people to step back and think, 'God, what would it be like to go without one or two of your senses?'" she says. "People take them for granted."

    "I finally felt I was part of the world. I think that's why the YouTube clip is so emotional. For the first time I could hear life, I could hear people all around me. It wasn't just my own voice or my mum's voice – I could hear the world.

    "I didn't know what the world I'd been living in for 40 years sounded like – the sound of the wind, the sound of someone putting a cup on the table, someone taking their glasses off and putting them in a case. Every sound was new.

    "I've always lip-read, so I always thought that once someone stopped talking, that's when it became silent. But, as you can see in the YouTube clip, the words were bouncing off the walls. When someone stopped talking to me, the sounds were lingering."

    She admits that the whole experience of discovering sound has been "overwhelming".

    "Even today, almost 12 months later, there's something new and different every day," she says. "For instance, today, just now, I heard the sound of wheels on the bottom of a suitcase for the very first time. If you're a child, you'll ask your parent, 'What is that sound?' and they'll explain. Eventually you get to know what each sound is. It's like I'm starting all over again.

    "The first time I heard the boom of a firework, I wasn't sure if it was nice or not. I understand it was done to celebrate something, but it didn't sound nice to me. I'm a lot more nervous than I used to be, a lot more jumpy. I lived in a world of silence for 40 years so I was quite calm, very unaware of the bad side of sound.

    "For instance, I'm only getting used to hearing drivers getting angry, beeping their horns really impatiently. I'm surprised at how angry people are. People making nasty comments. It's not necessarily a bad thing, but it's taking some getting used to."

    As for the video, Milne has never felt especially troubled by her viral fame.

    "I think in my case, people know my story more than they recognise me, which is a good thing," she says. "I'm a bit naïve about the fact that millions of people have seen the YouTube clip.

    "I don't have any regrets about the clip going online, but I remember the day before the video went viral, I'd been taking things very slowly. Then I was just thrust into all that media attention, doing interviews, flying to the Netherlands and Germany, and I had to listen a lot straightaway instead of doing it in my own time."

    @RoyalMail hav 2 say big pat on the back to our British posties! So proud ;)

    This unaddressed fan letter to Milne still somehow found its way to her home.

    "It's been a rollercoaster of a year," she says, "but I think I'll have to go back to that approach before the video went online. Even things like using the telephone, I have to work on – I can do it, but I'm not confident with it. I can do it with close friends, but I'd never answer to an unknown number. But then again nobody does!"

    The surgery itself was extremely high-risk – technically what she was having was brain surgery.

    "It's very serious," Milne says. "I had bilateral surgery, so it was even riskier. It was a seven-and-a-half-hour operation, and it was a month between the surgery and the switch-on. That month was agonising because we didn't know if it would work."

    "I had a hearing aid before, which I've described as like being underwater. I had to lip-read to find out what people were actually saying. If the operation hadn't worked, I wouldn't have even had the little hearing that I did. I'd have been totally deaf."

    Since last year, Milne has been inundated with people sending her musical suggestions.

    "I get things sent to me from all over the world – I have piles of music from India and the US that people composed inspired by my video. People are always suggesting music I might like – Elbow's 'One Day Like This' will always be very special to me as it's one of the first songs I heard.

    "People, are always saying, 'You've go to try this, you've got to listen to this.' I think I've gotten the hang of it, but then someone introduces another angle to music. Somebody just explained about acoustic the other day! Music is like a memory, which I didn't realise. I got to age 40 without realising the impact music has on people's lives. It's like a time machine. I'm fascinated by that."

    Milne's friend Tremayne Clement compiled a "Memory List" featuring 39 songs, one for each year that Milne was deaf. It was subsequently featured on Lauren Laverne's show on BBC Radio 6 Music.

    "Even though I'm deaf, I always loved music – I loved dancing to the rhythm and the beat. I was always on the dancefloor. But I had no idea what music was all about. I didn't have a clue.

    "I'm going to Glastonbury this summer, that's going to be amazing. I have my waterproof poncho already."

    Aside from music, does she have a favourite sound?

    "The laughter of a newborn baby, definitely," she says. "A close second is the sound of the voices of people I love. Now I can recognise who is talking. I've lost people, like my grandad, who I'll never be able to hear. People take that for granted."

    Milne's decision to have surgery had its detractors, not least within the deaf community itself.

    "Yes, I have had some negativity from the deaf community," she says. "But my belief is every deaf person's case is individual, and there's no right and wrong.

    "In my case, I had the cochlear implants, because I'm just trying to make the best of things. I'm going blind, which is why I waited until I was 39 to have the operation. I was very happy and content as a deaf person. I wouldn't have changed it. It's only because of my eyesight that I had the operation."

    Milne in her first school picture, and, right, wearing her "phonic ear", which hooked up to her hearing aids to amplify the little she could hear.

    "I never went to a school for the deaf or learned to sign," she adds. "I could lip-read, so I was 'mainstreamed' – I went to school with hearing children. My mum had a terrible battle to achieve that for me – I didn't realise until I was an adult how hard it was to get me into a school.

    "She had kept it from me, because I was having a hard enough time. People were nasty to me – children can be cruel, but I'm very forgiving of children. It's more the adults that I blame. I remember a teacher deliberately hiding his lips so I couldn't read them.

    "But that's life. It was very hard, but it was meant to be. It made my personality today. I'm a very happy individual. People ask, 'How can you be so happy when you're deafblind? I would find it absolutey heartbreaking.'

    "That's why I focus on the good in people. Anyone who is negative isn't in my life. I think we should all get rid of the things that make you unhappy in life."

    So nice to meet @Schofe & @hollywills :) @itvthismorning

    Some of her celebrity encounters over the past year.

    Lovely @jomilne10 backstage with the @backstreetboys. Catch both interviews later on @itvplayer!

    Today, watching the viral video of Milne is a bittersweet experience, knowing what we do about her loss of sight.

    She was diagnosed and registered blind at age 29, after many years of uncertain diagnoses. Right now, her vision has become reduced to a narrowing tunnel of light, surrounded by darkness, kind of like looking through binoculars the wrong way round.

    "Usher syndrome is cruel," she says. "I think life is cruel. You'd say that even if you're not blind or deaf.

    "It's weird – you're deaf, and then you lose your sight gradually. You're grown-up, and become strong as a deaf person, and then you start to go blind. If you've been deaf and blind from birth, you'll have learned to cope with it.

    "Using your eyes is how a deaf person gets by in life – it's how we communicate, get round, everything – and to find that that's going away is the most heartbreaking thing. It is really hard. People with Usher tend to be very resilient people; you're ready to cope with the next loss as you've already lost one sense."

    View this video on YouTube

    youtube.com

    Listen to Jo speak about her book here.

    Does she ever get angry about what she's had to go through?

    "I don't get angry – I get frustrated," she replies. "I'm only human. I get very stressed while trying to do the simplest of tasks, like getting from A to B. If I drop something I can't find it, even though I know it's there. I try not to be an angry person, but it does annoy you.

    "I have to constantly look up and down, and look around in order to see everything because I have such a tiny field of vision. It's very tiring. If someone came up to my side to put down a cup of tea, I wouldn't see them. That's why the cochlear implant has been fantastic, because it makes me feel less blind than I did a year ago. If someone puts a drink down now, I'll hear them."

    "I don't have self-pity," she continues. "There's nothing I can do. I can laugh or I can cry, there's absolutely nothing I can do about it. If you'd have told me five years ago that I'd be able to hear, I'd have laughed. I believe it's the same with blindness.

    "There's hope for a cure. With all the medical advances that are happening, I'm positive something will be done. That's what you've got to hold on to."

    In her book, Milne recalls a conversation she once had with a blind friend where they debated which sense they'd keep if they had the option: sight or hearing. Which one would she choose today?

    "Without a doubt, I'd give my cochlear implants back if I could keep my sight. I'd miss being able to hear, but I'd have memories of it in my head. I could hold on to it. I'd go back [to being deaf] if I could get my sight back, and to get that independence back."

    Despite everything, she lives by a Bob Marley lyric that she has tattooed on her arm: "Love the life you live, live the life you love."

    Milne tries to remain positive about everything in her life, including her decision not to try to have a child when she was younger for fear of passing on her genetic condition.

    "Twenty years ago I was very uninformed about the condition," she explains. "People just weren't aware, which is why it's so important to me that I make people understand what it is now through my work with the Osmonds' Hearing Fund.

    "If I'd known then what I know now, I'd have been much more optimistic and positive about the future, and having children would have been one of them. There are several women out there with Usher syndrome who have healthy children.

    "Having Usher doesn't mean your children will. There's a risk, obviously, but you can have testing done to make sure. It's now, at age 40, that I'm only discovering it. I feel like I'm far too old, but people say I'm not. You'll have to ask me again [in a few years]."

    True to form, Milne is dealing with her disability in the only way she knows how: by remaining positive, and spreading the word about her condition.

    "I have a progressive condition, and the tunnel [of vision] is getting narrower, " she says. "Over the past year I've been given a new lease of life, I'm excited for the future, but also sad that my eyes are getting worse. There's a whole world out there I'd like to see – the Sistine Chapel, the things I've never had the chance to do. I'll do what I can over time. I'll stay positive.

    "There's no strict timeline for how my vision will go. Sometimes it can be a year, sometimes it can be 10 years. But I've noticed my sight getting worse over the last year.

    "In the year leading up to the implant, there was little change to my sight. But since I've had the operation, the tunnel has narrowed. So there's a chance that in the next year it could go in a bit more, or it could just stop.

    "One day at a time. This is why I never worry about tomorrow."

    Breaking the Silence by Jo Milne is out now, published by Coronet.

    Milne hopes to raise £45,000 for the Hearing Fund UK and its partnership charity Music and the Deaf, which helps the 45,000 deaf children in the UK. To find out more, visit the Hearing Fund's website.