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 listens to the river and shares the power of acceptance.
The emerald-grass bank glistens in the sunlight as the incredible energy of the River Wansbeck broadens and slows. The mighty force pumping life into everything around me – the birds, the trees, the tall statuesque flowers, the sword-like masses of green plants, the graceful swans, the insects humming in the air.
This week I find myself kayaking in Northumberland, in my postbox-red canoe with the words ‘Mighty Piranha’ scrawled across the underside. I’m with my close friend Jo, who I met through work some 19 years ago, and one who has felt both sadness and happiness as my senses were lost and then heightened.
Right now though, she’s beaming at me from her own white kayak in her fluorescent orange life jacket.
I spot the mighty heron through my own tunnel vision, as if I’m looking through binoculars, on the boggy ground surrounded by tall lush grasses and clambering honeysuckle; completely motionless, almost ornate.
I wiggle my body in the cockpit, confidently doing my paddling strokes and trying to keep up; my fingers firmly gripping a wooden paddle, the water tumbling and splashing.
Another first. The ripple of the river. The swooshing of a paddle as it moves and swirls copiously in the air… a sound not dissimilar to the swish of a sword.
“I am me, Joanne Milne; a deafblind woman who, like so many of us, is just trying to do her best with the cards that life has dealt her.”
I imagine young giddy boys playing happily, as if recreating scenes from Star Wars. And I remember my own cane; something that is now part of me and an inanimate object I’ve learnt to welcome and not fear. One that helps me get from A to B.
How things have changed; I never forget that memorable day nine years ago when I was ‘measured’ for a cane. I stood tall with my arms outstretched as the lady worked her way round my vital statistics like an expert seamstress.
On that particular day, I was still denying the fact that I needed one.
I waved my hand over any basic white stick and wasn’t really taking in what she was telling me. This wasn’t a choice I was making: it was something being forced upon me. But I knew somewhere deep inside that resistance was futile.
It wasn’t because I was ashamed, but because it’s the ultimate reminder of this cruel disease robbing me of my precious eyes. Catching a reflection or glimpse of myself holding this symbol, a mobility cane, will hurt me for the rest of my life, but it’s now the kind of hurt that’s buried deep inside and doesn’t really affect me anymore.
I taught myself a long time ago: we are responsible for our own happiness and we can’t dwell on things out of our control. And yes, Usher Syndrome has made me the person I am. My attitude. My positivity. My zest for life.
I’m not in denial anymore; I’m not that 12-year-old who didn’t want to wear hearing aids because I wanted to fit in with my classmates. I’m no longer the woman who refused to get the cane down from the back of the cupboard. I am me, Joanne Milne; a deafblind woman who, like so many of us, is just trying to do her best with the cards that life has dealt her.
This acceptance has given me a desire, a stirring inside me: to do more, to do better and embrace the path of life. I truly believe things happen for a reason just as all our adventures, heartaches and joy are linked.
I’m currently preparing to visit Bangladesh, to partake in a project at a school for the deaf and deafblind. How life’s events create wonderful opportunities. This is something else. To help and possibly give the gift of hearing to these children in some of the hardest-to-reach places around the globe.
Just like a paddle, an oar, a cane, a guiding hand, some power – everything and everyone in life needs a little help, a little push, nurturing and love on life’s journey.4565 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