What if you finally were able to hear - but began losing your sight?

A woman who became able to hear is now going blind

Jo Milne’s Moving Story

When 10 million people watched a YouTube video showing Jo Milne’s sobbing response to her new cochlear implants, most assumed they were a deaf woman’s tears of joy at being able to hear for the first time.

However, the truth was a little more complicated. They were also tears of anguish and relief, because Milne knew she was gradually going blind, and if the implants hadn’t worked she may soon have been imprisoned in a world that was both silent and dark.

That shaky amateur footage, filmed on a mobile phone by her mother Ann in the audiologist’s office, became one of the world’s most-watched internet videos of 2014, and catapulted Milne, now 42, into charity campaigning.

“Most viewers of that YouTube video won’t have realised the real reason behind my reaction to the cochlear implants,” says Milne, from Gateshead. “As a deaf person, I had always used my eyes to communicate, and the thought of totally losing my sight was truly terrifying.

“I see the world as if through a letterbox or a tunnel that is getting smaller and smaller. When I was younger, the tunnel I was looking through was very wide, so the only thing I couldn’t see were my feet when I was standing up. But over the years, the tunnel has closed in, so now I can’t see my hands on the table but I can see the eyes, nose and mouth of the person sitting opposite.”

Milne has Usher syndrome, a little-understood genetic condition affecting 10,000 people in the UK, and the leading cause of deafblindness, the medical term used to describe those with a combination of sight and hearing loss that affects a person’s ability to communicate and perform everyday activities.

Everyone with the condition is affected differently, but many, like Milne, are born deaf and their sight gradually deteriorates due to a retinal disorder called retinitis pigmentosa. She was diagnosed at the age of 29 when she realised when driving home from work that she could no longer see what was in her wing mirrors. After a visit to a hospital, she was registered blind. Milne then gave up driving and resigned from her job.

Her long-term relationship was another casualty.

“I was about to start a family – I had all these dreams of what life would be. But when I was told I would soon be totally blind, I was petrified of having children I wouldn’t be able to see or hear.

“As it turns out, the doctors were wrong and I can still see 13 years later – and the irony is they’d be teenagers now, soon able to drive me around. But I don’t feel bitter. There’s a huge lack of knowledge about Usher. The doctors can’t tell me when or if I will totally lose my sight.”

Milne suffered depression in her 30s (“I’ve punched walls, believe me”) during which time she began building up a library of visual memories before her sight completely disappeared: her young niece Casey, her mother’s smile, the chandelier in her hall, family photographs.

However, she says at heart she has always been a positive person, and her wake-up moment came four years ago at sundown in the Peak District.

“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.”

THE GIFT OF HEARING

Her positivity is evident in her latest project, a BBC documentary called The Gift of Hearing, 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 lip-reading 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 lip-reading 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.”

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