Jo Milne on joy of hearing and losing her sight

Jo Milne had cochlear implants in 2014 but is now gradually losing her sight. Picture: Contributed

Jo Milne is making us tea in her immaculate kitchen. Through the wide window behind her, birds peck in the back garden beneath a blue sky. As the kettle boils, she fills the mugs on the worktop. We chat about my train journey down the east coast from Edinburgh to Newcastle – she likes to come up for Christmas shopping. The tea bags are pulled out, the milk slooshed in. She passes me my mug and we head through to the living room to get comfy on the sofa. We talk as we go, the kind of chat that people do when they’ve just met, small talk, about this and that and nothing. But our conversation is extraordinary, not because of what we’re saying, but because Jo can hear me.

Jo Milne was born profoundly deaf in 1974. She was formally diagnosed when she was 16 months old. She is 40 now. If you recognise her it’s probably because you – and millions of other people – witnessed the moment that her two cochlear implants were switched on just under a year ago. Suddenly, shockingly, she was catapulted into the world of sound and millions of us saw it because her mum filmed it on her phone and then a friend posted it on YouTube. It is an astonishing moment – witnessing someone experiencing an aspect of the world from which they have been entirely excluded. It’s miraculous.

“It’s nearly a year on [the operation was performed on 24 February last year, the implants were switched on exactly a month later] but it doesn’t feel that long to me,” she says in her soft Geordie accent, smiling and sipping her tea. “I’m hearing new sounds every day. I’m enjoying it.”

Jo Milne isn’t the first person to have cochlear implants. But that YouTube video touched people, it made real what can seem hard to imagine – the challenge of living without one of your senses and the transformation that takes place when that sense is restored. But Jo’s story is more complicated than even that. The reason she was given cochlear implants is because she has Usher Syndrome, a genetic condition characterised by deafness and progressive loss of vision. Jo is going blind and so took the chance to have her hearing restored in the hope that hearing would compensate in some way for the loss of her vision. It worked. Jo sees the world as though she’s looking through a tunnel. As her Usher Syndrome has progressed so the tunnel has got longer, making what she is able to see, smaller and smaller. But when her cochlear implants were switched on, suddenly her field of vision was massively increased. Hearing opened up her senses. “Even to you, my blindness is probably not that obvious,” she says, “because I can hear what is going on.” She’s right. She made us tea, walked me through to her living room, positioned me on the sofa. She doesn’t always look at me when I speak and hardly misses a word. “Like when the kettle boiled, I can move towards it because I can hear it. My implants improved the quality of my life no end.”

It sounds trite, possibly even patronising, to say that spending time with Jo Milne is humbling. But it’s true. She’s had to put up with more than most of us will ever face. That’s true in terms of her disability, but it’s also true in terms of how people with disabilities are treated. The book she has written, Breaking the Silence, is a fascinating insight into the challenge of living with a disability but it’s also a sobering reminder of the prejudice that people with disabilities face routinely. Jo was bullied at school, her educational needs (to be able to see the teacher’s face in order to lipread mainly) were ignored or resented, even by the time she’d made it to university to study nursing, she was so thoroughly humiliated by a lecturer she left. Writing the book was, she says, very emotional. “I cried my way through it. I think for anybody, regardless of their story, to think back to life as a child and people who are no longer here it would be very emotional. But it also made me realise how bad it was. I didn’t realise that at the time, but now when I read it I think, aw.” Her face crumples. “It’s made me realise how strong I am. When I see it written down, I think what a strong girl and that’s me.”

She’s right. Her resilience, if it can be put down to anything, might be attributed to having a family devoted to ensuring that she never felt that she was less than, or that she couldn’t do what others without disabilities could do. There were also hours of patient teaching and lots of love. Still, though, that doesn’t mean that there haven’t been hard times.

Jo was 29 when she learned she had Usher Syndrome. It had been suspected when she was in her teens but the test was negative and so that was that. Only it wasn’t. She was told to get on with her life and in some ways, that’s exactly what she did. But the fear of developing Usher Syndrome, of losing her sight, never left her. The posters she saw in doctors’ surgeries and hospital departments about what it was like to be blind terrified her. They created an image of her future she couldn’t bear. “When you’re a teenager, it could make you suicidal if you think that’s what your life is going to be like. Personally, I think there should be more positive messages.” It’s not that she is disputing the difficulties of life as a person with a disability. She knows that it is difficult – she lives that life. What she also knows is that this is only part of the story. But when her diagnosis finally came 11 years ago, Jo was plunged into depression. It was as though all of her fight suddenly left her and she couldn’t find a way to imagine a future. “For four years I was living my life thinking that I was going to be that person I’d seen on those posters all those years before. That picture influenced how I felt.” She knows the moment it happened. It was when a GP suggested she should give up work. It was meant to be supportive but it floored Milne because work had always been what she believed in, what she had aimed for. “I just felt I can’t be strong anymore,” she says. “It took me years to get that strength back.” In fact, it took four years. She likens the process of coming to terms with her blindness to grieving. She was grieving for that sense which was leaving her. And like any process of coming to terms, she is adamant that you can only do it in your own time, it can’t be forced or rushed. “I really tried to keep my independence for as long as I could. I hated the fact that I had to rely on people. I was only in my 30s. That’s why it was upsetting.” Back then, she would refuse someone’s arm when it was offered. She couldn’t bear to feel that dependency. Things are different now. “With my friends I really let them take care of me. I’ve accepted my life and I think that’s why I’m happy. But it’s taken a long time.

“It’s tough. It’s about taking things one day at a time. Stuff happens – people die, they lose their loved ones. In a way, life is quite cruel and that’s not just if you’re losing your sight. You have to get your head around the fact that you’ve only got one life and you’ve got to make the best of things.”

Milne’s matter-of-factness is what makes her so engaging. She’s also willing to talk about aspects of life as a person with a disability that are less well known, such as relationships. She was never single from the ages of 17 to 29, love, she says, came easily. In the book she writes about a partner with whom she lived but when her diagnosis of Usher was made, the partner is mentioned no more and Milne moves back from Sheffield where she’s been living to be near her family in Newcastle. As it happens, the reality of what happened is a bit more complicated than it sounds. “I’ve actually had three proposals of marriage,” she says, “and the reason I never accepted was due to my misdiagnosis of Usher. In the moment I wanted to say yes, but subconsciously I’ve always known that I had Usher and so I couldn’t look past tomorrow and commit myself to someone with plans for the future. Saying no to someone I loved hurt but the thick skin and strong nature I’d developed over the years helped me cope and move on. Until it happened again. I was afraid, I could flash forward to a different life, not the one I was living in the moment. They were asking me, me that day, to marry them, not a woman who was to be blind.”

The enormity of what she’s saying hits me like a punch. What a terrible loss, what a sacrifice to make. As ever, she’s unsentimental but honest. “I know they would have still loved me for who I was but it was like a secret and I couldn’t say yes. How could I even talk about it openly because the doctors told me I didn’t have Usher and I would have been told to stop being silly. The misdiagnosis changed my path. Had they had told me I had Usher at 16 – would life have been different? But on the same note – being told I didn’t have it made me embrace life in a different way.”

Jo is single now and she feels as though she has fully embraced having Usher which has allowed her to see a positive future. There’s no doubt, too, that learning to hear has changed her world. But she’s still coming to terms with what it’s like to live in a noise saturated world. Hearing can still be overwhelming because her brain is only just learning how to process sound. Sitting in a cafe with a friend, sometimes the noise of people speaking at the table behind her throws her off. She has difficulty tuning into the sound she’s supposed to be listening to. “I’m having to learn how to switch off from background noise. It can be really confusing because I’m lipreading as well but the words aren’t matching up with what I see. Sometimes I doubt myself and I think I’m not lipreading right. It can be disorientating.” She pauses. “It takes a bit of strength.”

Hearing has also made her more afraid. She’s learned what it is to get a fright. And she’s learned too that sounds follow you, even when you can’t see where they are coming from.

“I’m amazed at how angry some people are,” she says. “ I think I always focused on the good. When people were nasty I learned to take no notice, to not let it bother me, subconsciously I’ve looked away from certain facial expressions. But now I’ve had to take it in.

“For the first time in my life I can now be in a carriage on a train and I get the urge to move. I’m sure hearing people feel like that all the time. I think back to all those years of being deaf and sitting there oblivious.” She shrugs. “There are good things and bad things.”

One of the best things, she says, is that she’s been given lots of music to listen to. In fact, some people have gone as far as to write music specifically for her and a friend, created a playlist of 39 songs, four of which she listened to for the first time on Lauren Laverne’s Radio 6 Music show. “People are so excited for me,” she says. “It’s lovely.”  But she’s also still learning what a ‘good’ and a ‘bad’ sound is. Sometimes she hears things that hurt her ears, sometimes she has to ask people to explain the sound to her, “like Black Sabbath” she says giggling. “What I’m enjoying is going back to basics. I like it when it’s just the piano or the guitar or the bass. Or maybe just a combination of two or three. I didn’t have any idea that a guitar or a bass had different sounds because they were just objects to me.”

As well as learning to appreciate sound, she’s also learning to love silence. “When I was deaf I could never get my head around people saying that they wanted peace and quiet, but now I completely understand. But I can take them off. If things get too loud or after a hard day out instead of taking off my shoes or having a hot bath I take my implants off and put them on the table and have a cup of tea.”

Since her cochlear implants were fitted, she has had two cataract operations. They haven’t changed the size of her field of vision but they have changed the quality of how she sees. She doesn’t have to faff about with glasses or contact lenses anymore. It is, she says, a weight off her mind. But her sight is still diminishing, the area she can see is getting smaller. “There is a chance that it’ll never happen,” she says, contemplating that she might lose all of her vision. “I’ve got to hope that it might stop.” There is research on RP, the retinal disease that people with Usher have that might one day lead to a cure she hopes. Suddenly she smiles. “I’m positive that there will be some kind of treatment in my lifetime. I’ve got to be positive. I’ve only got to think of these,” she puts her hands up to her ears, “to know the marvels of technology and science.”

• Breaking the Silence is out now published by Coronet, £16.99. Jo wishes to make a difference to the 45,000 deaf children in the UK by raising £45,000 for The Hearing Fund and their partnership charity Music and the Deaf. To donate £1 to the campaign, please text MATD25£1 to 70070, #£1perdeafchild