Into the void
I’m no longer deaf – but I’m going blind
Jo Milne’s tearful reaction to being able to hear for the first time became an internet hit. Now she’s losing her sight, says hen 10 million genetic condition people watched a affecting 10,000 people in the UK, and YouTube video the leading cause of deafblindness, showing Jo the medical term used to describe Milne’s sobbing those with a combination of sight and response to her hearing loss that affects a person’s new cochlear implants, most assumed ability to communicate and perform they were a deaf woman’s tears of joy everyday activities. at being able to hear for the first time. Everyone with the condition is
However, the truth was a little more affected differently, but many, like complicated. They were also tears of Milne, are born deaf and their sight anguish and relief, because Milne gradually deteriorates due to a retinal knew she was gradually going blind, disorder called retinitis pigmentosa. and if the implants hadn’t worked she She was diagnosed at the age of 29 may soon have been imprisoned in a when she realised when driving home world that was both silent and dark. from work that she could no longer
That shaky amateur footage, filmed see what was in her wing mirrors. on a mobile phone by her mother Ann After a visit to a hospital, she was in the audiologist’s office, became one registered blind. Milne then gave up of the world’s most-watched internet driving and resigned from her job. videos of 2014, and catapulted Milne, Her long-term relationship was now 42, into charity campaigning. another casualty. “I was about to start
We will see her again this week, in a family – I had all these dreams of a BBC documentary, as she delivers what life would be. But when I was hearing aids to 517 deaf children in told I would soon be totally blind, I Bangladesh. This time, it’s she who was petrified of having children I gets to watch their reactions. wouldn’t be able to see or hear.
“Most viewers of that YouTube “As it turns out, the doctors were video won’t have realised the real wrong and I can still see 13 years later reason behind my reaction to the – and the irony is they’d be teenagers cochlear implants,” says Milne, from now, soon able to drive me around. Gateshead. “As a deaf person, I had But I don’t feel bitter. There’s a huge always used my eyes to communicate, lack of knowledge about Usher. The and the thought of totally losing my doctors can’t tell me when or if I will sight was truly terrifying. totally lose my sight.”
“I see the world as if through a Milne suffered depression in her letterbox or a tunnel that is getting thirties (“I’ve punched walls, believe smaller and smaller. When I was me”) during which time she began younger, the tunnel I was looking building up a library of visual through was very wide, so the only memories before her sight completely thing I couldn’t see were my feet disappeared: her young niece Casey, when I was standing up. But over the her mother’s smile, the chandelier in years, the tunnel has closed in, so now her hall, family photographs. I can’t see my hands on the table but I However, she says at heart she has can see the eyes, nose and mouth of always been a positive person, and her the person sitting opposite.” wake-up moment came four years ago
Milne has Usher syndrome, a littleunderstood at sundown in the Peak District.
W“I remember the sky was pink, and there were the beautiful greens of the British countryside, there were birds, cows. It was everything in one moment. I suddenly thought: ‘I’m not blind, I can see this.’ I had been living every day as if it was the last time I would see, and it was exhausting. In trying to prepare myself for the day when I could no longer see, I became more blind than I actually was. I’d stopped looking.
“I’m still building up a vision bank but not in an obsessive way. I just take two seconds more to look at something and try to remember – but that’s something we should all do because no one knows what the future holds.”
Her positivity is evident in her latest project, a BBC documentary called yet another consequence of that YouTube video. Among the people who got in touch with her afterwards was Justin Osmond, the deaf son of the Osmonds’ lead singer Merrill, who wanted her to be an ambassador for the family’s charity, The Hearing Fund UK.
She was also contacted by her childhood best friend, Amina Khan, who had moved to Bangladesh 20 years earlier. “Amina had told me that in Bangladesh deaf people were much more isolated because so few had hearing aids. It was always our dream to go out there and help.”
This April, she made it a reality, thanks to £300,000 funding from the Osmonds. In the film, she watches the children’s reactions as their hearing aids are fitted: puzzlement giving way to wonderment and then the broadest of smiles.
“It reminded me what I’d felt,” says Milne. “To be deaf in Bangladesh is to be disabled in a way it isn’t in the UK, where it’s just a communication barrier. I was happy and confident being deaf and I would never have considered cochlear implants if I hadn’t been losing my sight.”
Her hearing is still improving because she is adding new sounds to her “database”: seagulls, a bass guitar, the clink of a teaspoon in a cup.
The richness of a world with sound astonished her at first. “It’s like being a child again, learning to read and storing each new word in your memory bank. I’ve had to do the same with my sound library.
“It’s still overwhelming at times and I’m glad to take it off when I go to bed. I would never have believed it a few years ago, but I love the silence now.”
Her hearing is becoming her window on the world as her sight diminishes. “I am still doing lipreading when I talk to people – that’s who I’ve been for 40 years, and it’s a habit. But I now find when I’m relaxed and chatting to friends or family, I realise I’ve been listening not lipreading for the past five minutes.”
She’s been told she doesn’t “look” blind (she was once asked at a train station if she was picking up litter with her cane), and doctors can’t say how her blindness will progress.
“I’ve wasted far too many years of my life wondering when it’s going to come. That horrible cloud has gone now, which is not to say I don’t worry sometimes. But I can honestly say I’ve never been happier or more fulfilled.”