Since the world watched her hear for the first time, Jo Milne has been on a journey into sound, all the while knowing her world is getting darker by the day. This week she marvels at the talent and spirit of youngsters… and steps off a cliff.
A blanket of twinkly lights on the ceiling, a black background which resembles a galaxy of stars on a clear night. Numerous tables in pretty white tablecloths, decorated with confetti, and a whiff of a fragrance that assaults my nostrils in a similar manner to the duty free lounge at an airport.
I’m in Leeds at The Hearing Fund UK Gala, my heart filling with pride. We’ve just witnessed an enchanting musical performance; the teasing of a violin and its powerful, long lasting notes. I studied the bow moving to create the most powerful sound, similar to an opera singer then adding a rapid vibrato, almost like an explosion as they finished.
Then there’s a standing ovation. The room erupts into rapturous applause; I hear chairs scraping, the clatter of people scrambling from their seats, the clink of cutlery placed on the chinaware. The diamante necklaces and sequinned fabric glitter across the room, like rugged rainbows reflecting from the chunky prisms on the chandeliers.
Silk bow ties and smart cravats appear in my view; moistened eyes fixated on the stage. A slow-motion beam effect of a white strip of light sweeps across highlighting the shiny brass saxophone, the hourglass of a violin and the articulate keyboard. If I was a peacock, right now my tail feathers would be beaming – all 100 eyes staring widely at the stage.
This isn’t Last Night of the Proms or some cool acoustic set at Glastonbury – these are children who have just performed, and who like me, are deaf. A poignancy fills the room. I am mesmerised at their talent and at how my own life has changed. Fascinating.
Now I’m an ambassador for Olive Osmond’s Dream of Bringing Music to Your Ears, this is what my work is all about. Proving that music is and can be a part of life for those who are deaf. It certainly was for me. I remember as a young child; ears pressed to our hi-fi speakers while lip-reading my sisters as they sang along to various 80s classics; heads nodding and hands tapping the carpet in time to the rhythm.
“I remember as a young child; ears pressed to our hi-fi speakers while lip-reading my sisters as they sang along to various 80s classics; heads nodding and hands tapping the carpet in time to the rhythm.”
As a young adult, friends would nudge to strangers, pointing at me on the dance floor; smiling and arms waving in the air, dancing to the beat. “Can you believe she’s deaf?” they would gush, feeling boastful and proud.
Some 20 years later, I’m sat softly smiling to myself at a table with special guests, I spot a James Bond lookalike schmoozing by in his shades, posing for photos. There is the biggest ice bucket in the centre of the table, resembling a goldfish bowl filled with bottles and I have a champagne flute in my hand. No silence, just excited chattering and music belting out from the stage inviting you to go over and dance. I see the signed performances to ensure inclusion. A language in itself for the deaf. Like an art using fingers, its beauty can almost hypnotise you; so soft, so gentle.
I was lucky to be born into a family who were happy to spend hours bridging that huge divide between the deaf and hearing world. Whether we excel in speech therapy or use the beauty of BSL, deaf identity is one to be proud of. It’s not us deaf who can’t hear, it can sometimes be the hearing world that doesn’t listen.
On this night, the signs point to fun and happy times. I’m mingling with friends and celebrities… I don’t want the evening to end.
Imagine hearing something so powerful, a sensation so overwhelming, that every little nerve inside tingles and comes alive. Each tiny hair stands on end and as sound enters my ears, emotions swell in my heart and deep inside my belly. Then my brain starts to give way to this flooding of the senses and before I know it, my friend Emily drags me up to dance. I’m disorientated and swimming with sound – weightless, floating, moving with it. The miracle of my cochlea implants.
There have been many moments like this over the last year since my operation. Slowly the volume on my implants has been adjusted and, just as I wished for all those years ago as a child, the sound of the world has been turned up to full blast. And while my vision may have got smaller, I’ve rotated a dial of high-resolution colour and can see more today than I ever have.
“It’s not us deaf who can’t hear; it can sometimes be the hearing world that doesn’t listen.”
People ask why I’m so positive when I have such a cruel disease and one that is likely to make me totally blind one day. I always answer that it will not ever make me feel sad, and had I not had Usher Syndrome, would I appreciate life as much as I do?
As long as I have a breath in me, I’ll continue to raise deaf and deaf/blind awareness and campaign for better access for all. Then when I’m ready, I’ll hang up my walking boots.
But I’m not ready yet.
Still covered in muddy stains from a recent trek up Ben Nevis, they are back on my feet. This time I’m doing another fundraising challenge: abseiling from Cow and Calf at Ilkley Moor. “You can do this”, I tell myself as I veer over the edge of the rock face and hear the cheering and shouts of encouragement from below.
When I reach the bottom, my head swimming with adrenaline, the panoramic views of West Yorkshire urge me to take it all in. Rolling moors in different shades of green; cows grazing; bales of hay stacked up against barns and a whiff of pungent manure makes me fiercely proud to be British.
No amount of time will ever dull the happiness I extract from sound and sight. Laughter. People being happy. The faces of those I love. And the sound of my Mum’s voice which I could hear as they released my safety harness. That ever-present support in my life, whose voice signals love, home and family. A precious gift every day.721 Views
Gateshead-born author of Breaking the Silence, ambassador and campaigner. Jo has Usher Syndrome, a rare genetic condition causing deafness then the onset of a retinal disease leading to gradual loss of vision. Those who know Jo describe her to be inspiring as she continues to wring the joy out of life. @jomilne10