Written by Jo Milne


Jo Milne: A diary of firsts and lasts

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. During Deafblind Awareness Week she’s using her experience to celebrate ability.

The difference between normal vision and the effects of retinitis pigmentosa, which causes severe visual impairment.

The difference between normal vision and the effects of retinitis pigmentosa, which causes severe visual impairment.

It’s Deafblind Awareness Week #DBAW2016.

I want people to celebrate and recognise ‘abilities’ rather than ‘disabilities’, moving away from shuddering myths – a walking nightmare or worst case scenario that many can’t possibly even relate to. On the contrary, you don’t have to be totally deaf nor totally blind to be considered ‘deafblind’.

When I had my guide dog Matt, it was quite a regular occurrence: “Lovely dog, are you training him?”

“No,” I would say with a smile, “he’s my guide dog.”

“Oh, you don’t look blind!”

Admittedly, I hate ‘labels’ with a passion – I always have. Growing up, it was The Deaf Girl instead of Joanne who’s deaf. And now it’s the same with ‘Deafblind’. So-called ‘labels’ can give a message of being incapable and useless in an instant, before even scratching the surface of a person’s abilities and individual talents. And we all possess those. Every single one of us.

So what exactly is Usher Syndrome? It’s a rare genetic condition, yet the leading cause of congenital deafblindness. There’s various types of Usher so everyone has their own yellow brick road depending on how early on or severe their hearing and vision loss is.

Jo MilneIt’s a bloody hard condition to deal with considering 80 per cent of information is taken in through our eyes, and then there’s the added burden of deafness. And I constantly have to prove this: to hold out my cane and its red stripes resisting a sarcastic “I just carry it around for fun” comment, because there have been members of the public who don’t believe me or assume I’m picking up litter with my cane at King’s Cross (true story).

I’ve got tunnel vision: that means I can see fine in the middle and can read slightly above normal print but I cannot see my feet when I walk, nor people as they approach my sides. If I looked at you across a table, I might only see your eyes, nose and lips. This is the diminishing tunnel through which I view the world.

A series of eye tests 11 years ago revealed a truth I’d been trying to evade for two decades — my sight was so poor I left the consultant’s office thinking: ‘What next?’

I could still see as well — or rather, as badly — as I had when I’d walked into the hospital, and yet that diagnosis had changed everything.

Then the tears came. You could take my arms, my legs, anything… just not my eyes. Not my eyes.

I thought of my family. My friends: the laughs we’d had, the jokes we’d shared. I didn’t want to be an outsider. I didn’t want to be cast into darkness, unable to share my life with them. I hung on every word we exchanged, but I realised I could barely distinguish between their faces.

I sank into a deep depression that lasted for years. I was forced to give up my car and then my job. The threat to take away my channel of communication with the world made me succumb to despair. I cried day after day; the salty taste of my tears would remind me of the ocean.

Despite the shadows closing on my vision, I could still make out some of the wonders around me: the sky turning pink as the sun set, bathing me and the valleys beyond in a warm glow. I thought of all those years I’d wasted worrying that my sight was about to leave me and yet there was life right in front of me. Why stop looking? I vowed never to take my eyes off life while I still had them.

It empowered me; I vowed to go back to work and look into the possibility of cochlear implant surgery.

And that’s how I found myself propelled onto the world stage a year later, with more than 12 million people watching on YouTube the moment filmed by Mum when I heard for the first time. But no one had a damn clue that the girl crying in the video was crying because she’s going blind.

I had never realised what the gift of hearing would bring me: those small, insignificant sounds coloured and heightened my life, making my flat world three-dimensional. As the darkness continues to encroach, hearing will become my window to the world around me; the dimension in which I will learn to live.

I remember always knowing that I’d go blind someday so it was always looming over my head. I remember asking my mother while still in my teens: “Why did God do this to me?” before she turned off the lights. I can only imagine how she felt at that moment, since that was an unfair question. But she told me: “Because he knew you’d be strong enough.”

“I thought of all those years I’d wasted worrying that my sight was about to leave me and yet there was life right in front of me. Why stop looking?”

By my 20s, my lower field was gone and night-blindness had kicked in. I compensated by my sheer determination to party like I wouldn’t get another opportunity, and party I did. I refused to tell anyone and some were gullible enough to attribute my clumsiness to my deafness rather than the awful truth.

And now…

What does it feel like? Frustrating. Tiring. I have to sleep at least nine hours a day just to feel rested because of the visual and mental strains. It can be terrifying to even go outside. My cochlear implant helps me be more acquainted with my surroundings but I can’t depend on precision. I do try not to worry constantly, it would be too raw so I’ll deal with what’s in front of me. Right now. Literally.

Admittedly, my declining vision is the hardest on my loved ones. As I start to struggle with what I used to do without a second thought, they stand by and watch. I can still see well enough to see their looks of sympathy. So, I’m also dealing with immense guilt of knowing I cause pain to others who love me.

But I don’t want to let deafblindness define my life. It’s certainly a part of me, but it’s not the only part. I want to live my life as a whole, not as someone who’s always looking to find a missing jigsaw piece.

Now I’ve accepted it, nothing has changed apart from my attitude. I have dreams – to continue growing in my career, to make a difference and to find true love. And believe me, I’ve been loved. I’ve rejected it more than I’ve let it be received, but when I’m happier in my own skin, the more comfortable people feel in my presence.

In today’s modern society and through accessible technology, we ingress a gateway to the world around us. As the late President Reagan said 32 years ago when Deafblind Awareness Week was launched around the birth anniversary of the inspirational Helen Keller: “This is in place so our government, health professionals, communications media and people of the world observe living with deafblindness before decisions or judgement is cast upon.”

We have a long way to go to be understood… we become older but newer every single day and despite the gut-wrenching pain, the past cannot be unlived.

I can’t go back in history and rewrite a misinformed doctor’s warning that I’d enter a world of total darkness by the time I reached 30. But I can continue my mission to educate, armed with knowledge, courage and hope so it doesn’t happen again.

Deafblind Awareness Week is taking place until 3 July 2016.

Jo Milne’s book, Breaking the Silence is out now. Her Facebook page can be found here.
Read the previous entries in Jo’s diary of firsts and lasts here.


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Written by Jo Milne

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