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 has to look a little bit harder for reasons to smile. She still finds them though. We love her.
There’s a feeling like electricity pulsating through me; a tingling, a ringing in my ears, my arms, my legs. I take a deep breath as my left eye starts to gently flicker; a sign the volume has reached its maximum for my brain to absorb.
I flinch at how loud this once silent room suddenly is: the ticking of a clock, the sound of a pen being placed on the table.
This week I find myself back where it all started. I walk through the chilly corridors of Queen Elizabeth Hospital in Birmingham scanning for the exit, feeling an urgency for some fresh air.
My cane is swishing side to side almost gliding along the sterile polished floors. I feel rather disorientated. I need to sit down, to be alone but I can’t. I have a train to catch back to Newcastle. To home.
In my own bathroom earlier that morning, I took a familiar place in front of the mirror; shoulders back, facing forward – as on so many mornings over the last 12 years – I do a little test, my test.
Wearing a Breton top made up of navy and white stripes, staring into the glass, I can see quite clearly my face, my hair, the tops of my shoulders.
I place my hands in front of my tummy and start to wiggle them, then slowly start to move them up towards my neck. I keep on staring at my reflection the whole time. The reflection I see before me. But I can’t see any fingers. Up and up they come, until finally I see the tip of my index finger appear in my view.
“It’s easy to say I’ll close my eyes and give in… but I won’t; instead I’ll wear my trademark smile in my trusted Tom Ford lipstick.”
I count down from my shoulders: two stripes. I have an uneasy sinking feeling in the pit of my stomach because four months ago I could see three stripes down my top. Twelve years ago, it was down by my belly; five years ago, just above my chest.
Anxiety knots up my insides and for a short while, blanks out anything positive. Because this week, I’ve noticed another change and it’s knocked my confidence slightly. Under the stark hospital lighting, I apply some lipstick, gulp down that uneasy feeling, sigh deeply at that familiar sentence in my head: “You’ll be okay, Joanne.” I style my fringe with my fingers and smack my lips together ensuring my nude pout is done to perfection.
Applying lipstick never fails to instantly give me a confidence boost. Some people might think I sound shallow, but since this bloody devastating diagnosis, I will do what makes me feel good.
It’s easy to say I’ll close my eyes and give in… but I won’t; instead I’ll wear my trademark smile in my trusted Tom Ford lipstick.
Because whatever else, I’m still young – or I’m a young 41-year-old who feels silly and giddy at life’s simple pleasures. And because there is, really, nothing I can do.
As I leave the building, the glare and contrast of natural light hits me and those same emotions I felt last year on a much smaller scale come flooding back: ‘hearing’ outside – the traffic, the gust of air, workmen in fluorescent jackets and hard hats shouting to each other over the loud metal clanging.
Those with Usher Syndrome will tell you we don’t feel deafblind and more so, don’t look it. Like members of a secret organisation we constantly scan for visual clues; all to assist us in our fast, dimming, silent world.
Take a train station, for example. I only have to take a glance at the departures board and my brain takes off. “The Edinburgh train leaves in 22 minutes on platform four,” I’d tell a stranger when I lip-read her frustration.
Observant. Clever. Articulate.
What is Usher Syndrome exactly? It’s a rare genetic condition which causes deafness then the onset of a degenerative retinal disease called retinitis pigmentosa (RP) which kills photoreceptor cells and attacks peripheral vision. There is no cure.
There is nothing more scary than to be deaf and learn that you may also lose your vision, so the diagnosis can be devastating. It causes depression, isolation, denial – and in some of the worst cases which don’t bear thinking about, suicide. There are an estimated 400,000 people with Usher worldwide and we can do incredible things when we stand together.
It’s us and only us who know what it’s like to live with this condition, to have people constantly saying, “You don’t sound deaf,” or, “You don’t look blind.” To put us in the same category as many who can’t see or hear at all. I chuckle at the times I’ve been mistaken for a guide dog trainer when I was actually being guided by my then own guide dog, a black labrador called Matt.
As the strikingly beautiful and talented Molly Watt celebrates her 21st birthday this week, there’s an incredible network forming all over the globe and the future certainly is optimistic. People from all walks of life; those with families, the young, the elderly: all standing up to be counted and to educate the rest of the world as that glimmer of hope for a cure seems to be on the horizon.
I’m in awe how Molly at such a young age – and living with Usher Syndrome herself – tackles pressing issues in accessible technology and spearheads her own charity The Molly Watt Trust (MWT).
There’s not that uncertainty like when I was her age and I do often think how I and my family, particularly Mum, would have welcomed an organisation like this 20 years ago, just for somewhere to start and for being in contact with others in the same boat. Instead of feeling so alone.
I remember my own 21st. My elder sister Julie worked as a holiday rep on the Greek island of Kos and I’d take all my annual leave from work to visit her. The exhilarating moped rides – a loud whooping with a sense of freedom; my long blonde hair blowing in the wind and feeling the warm breeze from the turquoise Aegean sea.
It breaks my heart remembering that young girl whizzing by on a moped who was told, rather bluntly, that she may not “see a thing” by the time she was 30 years old.
This changed my life, my yearning to start a family, marriage and all those plans every 21-year-old subconsciously makes. How wrong they were. It goes to show, it’s crucial at the point of diagnosis that the correct advice, guidance and support is in place. This all comes with raising vital awareness, a mission of mine, the MWT and so many others.
I may not be able to have my morning jog anymore, pacing through the neighbourhood, or enjoy the convenience of zipping up and down the motorway in my metallic green Ford Ka. But I can still see and I focus on the can dos rather than the can’t dos. So instead I make train journeys enjoyable with an ‘extra shot’ coffee, a delish treat and some social networking – being sure to occasionally take in the views.
“It breaks my heart remembering that young girl whizzing by on a moped who was told, rather bluntly, that she may not ‘see a thing’ by the time she was 30 years old.”
The same with a vigorous workout; a twice weekly get-together with my younger sister Alana at our local gym, positioned by the banks of the River Tyne, all floor to ceiling windows for marvelling at the beauty of Newcastle’s famous landmarks. I swim taking in the views, I pound on my treadmill and on the rare ‘let’s have a pint’ moment, Alana always kindly lets me have the better seat at our table.
By the weekend, I comfortably sink into a deckchair at a garden party in Malton, my bare feet feeling the soft, almost tickly, grass. I’m celebrating a friend’s birthday; the sun’s strong rays warm my skin. And here it is. My favourite sound. Laughter. And being surrounded with friends and sampling a newly invented cocktail giving out that new fizzzzzzzz…. sound. It’s what summer afternoons are all about and it reminds me I’m certainly one of the lucky guys. Life is good.
As night draws closer, I’m plunged into an eerie silence again – but not inside as my memory is whirring with different sounds and music that linger long after I’ve placed my processors next to me on the bedside table. The moon casts a streak of light on them and as my eyelids start to feel heavy. I remember that voice: “You’ll be okay, Joanne,” and I vow I will be.2330 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