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. In her latest column for Standard Issue, a joyous birthday party sets off a stream of bittersweet memories.
A redbrick 1930s semi-detached house on a tree lined Tyneside suburb proudly boasting a newly painted duck egg front door. Pretty terracotta pots with boxwood topiaries line the driveway to my home.
I hear excited chatter from children running around in masquerade masks; I hear greetings exchanged among old friends, whooping when a cork pops and a roar of cheers when a friend attempts to do the splits and somersaults.
I’m celebrating my 41st birthday and a handful of family and friends are here with me today. A year after the crest of the wave when life would never, ever be the same again. The moment my cochlear implants were switched on, a feeling of electricity pulsating through my body and experiencing a sensation I’d never felt before – hearing for the first time.
Today, I’m like an excited toddler on Christmas morning, placing vinyl on my new Crosley orange retro turntable. It’s not long till my Beatles album collection creeps to four; starting from scratch, my own thought-provoking journey of discovery.
My good friends Tremayne and Paul are laden with extension cables hooking to speakers so they could play an array of music for me, their eyes constantly scanning my reaction. My kitchen sides resemble a DJ mix station, something I’d never have imagined.
I may never have heard music growing up but I watched my Mum operate the dial on our hi-fi as I danced to musical statues like any other child; like a secret code between mother and daughter and I knew her facial expressions meant the music was about to be silenced. I danced with my Dad on New Year’s Eve to The Spinners’ I’m Working My Way Back to You with one eye fixed on my Nana Mary tapping her royal blue Velcro slipper in turn to the rhythm, the beat.
I’m feeling nostalgic as I remember the family living room at Weymouth Gardens where I grew up and the parties. The vintage white unit with a drinks cabinet which opened on a latch, a shelf displaying a 1960s pineapple ice cube bucket and a jar of vivid red maraschino cherries. The silly string was a permanent fixture and a useful tool for my siblings to grab the attention of their deaf sister had I been too far away to tap.
Get-togethers were a must in our diaries for neighbours, families and friends to grab that today, here, now moment; to create life’s memories. And today, it feels and is a brand new life. ‘Clink’ as I hear two champagne flutes, the ice dispenser on my American style refrigerator working overtime, the aroma of rose bouquets adorning my floating shelves and hitting my strong sense of smell. My Elbow portrait hangs from the wall, signed by the ‘Elboys’ as they too know what an incredible journey I’m experiencing. Those who introduced me to the sounds of a violin are here, something I’d never heard before.
I look out my kitchen window and take a few seconds to watch those that mean the world to me. The way they laugh and converse with each other; yet if I was to wiggle my fingers in front of my nose, I wouldn’t see a flicker. I admire the artistic design of butterflies incorporated on my friend Angela’s tattoo. She’s sitting on the grass unaware I’m studying her full sleeve art which resembles a picture of nature and beauty, the contrast of her pale skin peeking through – all colours so vivid to me, yet I wouldn’t even be able to cross a road without using my long white cane.
An aid that is now part of me and a cruel twist to Usher Syndrome. It can reduce me to pitiful tears when I hurt myself or get stressed when more of my valued independence is taken away from me. We all share our problems and laugh so hard and by watching us, you wouldn’t think we had a tickety boo. Yet every single one of us has our lives tinged with sadness in some form. In fact the transition to becoming deafblind in my late 20s was one of the worst periods of my life. I’ll never forget the day, the moment I caught a glimpse of myself in a shop window. My attention was pulled back to ‘that’ woman I spotted as I walked along with my then guide dog after training. I saw a blind woman holding a harness with a guide dog. I soon realised, the reflection in the window: it was me.
That was the first time I saw myself as a blind woman and it felt like being punched in the stomach. That image I’d defied my whole life and a deaf person’s worst fear. But I taught myself a long time ago that the countless tears and anger will not change a damn thing. Whether I like it or not, I have Usher Syndrome and I’m proud to be me – a confidence that has taken me a long time to achieve, years in fact. It’s my personal battle and similarly to a wary soldier, I must never give in. Survival means the precious gift of life and the good always, always outweighs the bad.
The ping of my inbox suddenly snaps me out of a daydream and I’m reminded it’s a week of celebrations; the news that my autobiography Breaking the Silence is being printed in Japanese. I picture my face on the front cover on the printing press, its mechanism rotating over and over again. Global awareness reaching bookstores in the bustling skyscraper cities, the sheer geographical size of them… without realising, I shake my head as I log off.
I then gently close my record player and insert the vinyl LPs back in their sleeves and as the party and daylight comes to an end, I go to lock my back door. I notice remnants of silly string stuck to my dress, then something catches my eye. I glance up and see a pink sky: not just pink, a shocking pink that you have to double-take. Then I remember the simple beauties our world offers us and tomorrow is a brand new day.
Jo’s book Breaking The Silence is available now.2716 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