HOW CARA THEOBOLD HIT THE JACKPOT I’m going blind — but I’ve never felt so lucky
From downstairs at downton to lottery winner in the Syndicate, this summer’s must-watch drama It was a video that touched millions: the moment Jo, who was born deaf, heard for the first time. Now she reveals an impossibly cruel twist
This week i watched a blazing spanish sunset on a beach in ibiza: a molten sun melting into a sea shimmering with coloured light. it was an everyday miracle — the turning of day into night. But for me it held a special poignancy, because it could be among the last i will see. The sunset is, in fact, a perfect metaphor for my own diminishing sight: as the light ebbs from a darkening sky, so, too, is it fading from my eyes.
A few months ago in Femail, i told the story of how, after being born profoundly deaf, i heard for the first time last year at the age of 39, thanks to life-changing cochlear implant surgery.
The moment when the implants were switched on, when my silent world exploded into a cacophony of sound — of ticking clocks, birdsong, running water, traffic noise and children’s laughter — was overwhelming. i burst into tears of joy.
The first sound i heard was a human voice, then the tap of shoes along a corridor. i cried at the sheer miracle of it; at the everyday wonder of sound.
Yet just as one new sense was opening up, another was deserting me. My sight was irrevocably dimming. For i have Usher syndrome, a genetic condition that caused me to be born deaf and since my teens has slowly and progressively been robbing me of my sight.
And now, a year after i heard for the first time, the darkness is closing in on me. in the past 12 months, my vision has dimmed to such an extent that faces are fading from my view.
if i looked at you across a table, i might only see your eyes, nose and lips. This is the diminishing tunnel from which i view the world.
soon it will leave me in complete blackness. i don’t know when that day will come, though i f eel it approaching ever closer. And each night before i go to sleep, i only hope that i will wake to see another day.
To lose one sense just months after recovering another, might seem a cruel blow. in fact, it has made my ears — my new sense of hearing — more precious than ever.
i treasure the independence hearing has brought me; the vivid new sensory world it has opened up. i may not see traffic approaching, but i hear its roar as i cross the road. i may not see birds, but my heart will lift at their song.
And as t he darkness encroaches, hearing will become my window to the world around me; the dimension in which i will learn to live.
Now, in my mind, i am consciously building up ali brary i can i magine when my sight has gone. i will recall the sweet face of my niece Casey, now five; my fresh white kitchen; the glitter of the chandelier and burnished mirror in my hall.
it is only when we stand on the brink of huge loss that we really learn to cherish what others accept unthinkingly. i never felt burdened by my deafness. i’m determined, too, that i will learn to live with the small i mpediment of blindness. i will continue to wring joy out of life.
For that is what i have always done. As a child growing up in the seventies with two loving parents — my dad Al, a cable contractor, and my mum Ann, a housewife — my deafness may have set me apart, but i never felt isolated by it. My wonderful mum made sure of that.
From the age of seven, at her insistence, i went to a mainstream school in my home town of Gateshead, Tyne & wear. My deafness did not feel like an impediment: i’d never been able to hear, so i didn’t miss the voices around me.
But i was still fitted with a phonic ear — an amplifier strapped to my chest, which worked alongside a hearing aid. it amplified low sounds (white noise) as it was a comfort to have some sound, even if i did became the butt of bullies because of it: there were cruel jibes from children who called me ‘robot’.
As i grew older, i sang along to Duran Duran on Top of The Pops with my sisters, Julie, now 44, and Alana, 35, but only because i lip-read the lyrics from them.
As a teenager, i’d be on the dance floor, moving in time to the vibrations that pulsed through my feet. i never felt constrained or marginalised because i could not hear. There was nothing i felt that i could not do; no mountain i couldn’t climb.
i enjoyed relationships — and heartbreaks — li ke any other young woman. My deafness never held me back from experiencing everything that life had to offer.
But if someone then had threatened to take away my eyes, my channel of communication with the world, i might have succumbed to despair.
My eyes, of course, were doubly important because i was deaf. They allowed me to lip read, to learn to speak in my Geordie accent because i spent hours and hours — years, in fact — in speech therapy, learning to mimic sounds. But then the day came when my vision started to go. it was in my teens that i first noticed that things weren’t right. As i drove ar o und i n my green Ford KA in my career as a disability rights co- ordinator, the signs that all was not well began to accrue. i’d park and not notice a bin preventing me f r om opening my door and i’d fail to see cars coming up behind to overtake.
i passed this off as a lack of concentration until, finally, i confronted the inevitable and went to my GP, who referred me to a consultant.
A series of eye tests revealed the truth i’d been trying to evade — though i could still see enough to get by, my sight was so poor i was officially blind. i had retinitis pigmentosa, a symptom of Usher syndrome, where the retinal cells die.
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 awful diagnosis had changed everything.
And then the tears came. You could take my arms, my legs, anything . . . just not my eyes. Not my eyes.
i thought of Mum. i’d never even heard her voice, yet i knew every inch of her smile. i could tell her my secrets and take her advice simply by watching her lips move.
i thought of my sisters and their constant, good-humoured mickeytaking. They’d translate phone calls from boys who called for me as a teenager, making up false confessions of love from them to make me giggle.
And i thought of all 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 sank into a deep depression that lasted for years. I was forced to give up my car and then my job.
I spent weeks sifting through photographs, trying to burn memories onto my brain while I still had the chance: my mum’s face, the outfits she’d put us in as girls, childhood trips to the seaside; my first holiday abroad with boyfriends, the girls, my family: my whole life, in fact, stored away in a capsule in my memory.
I’d stand in front of a mirror wearing a Breton striped top and count how many lines I could see. I watched over the years as they vanished into a blur. I learned to use a white stick; I trained with a guide dog. Seared in my mind is the vision of a blind woman, reflected in a shop window, holding onto the harness of a guide dog. My heart went out to her. Then I realised she was me.
So I went home and sobbed. I no longer saw the beauty around me. All I saw was what would be lost to me. And then, a miracle happened. A few years after I was diagnosed as blind, I was walking in the Peak District with my guide dog Matt. As he raced ahead of me, weaving up and down the grassy banks, the wind blowing back his black velvet ears, I looked up and for the first time in years I allowed myself to see the beauty of the landscape.
Despite the shadows closing on my vision, I could still make out some of the wonders around me: the sky was turning pink as the sun set, bathing me and the valleys beyond in a warm glow.
All these 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 took in that view and vowed never to take my eyes off life while I still had them.
I left the Peak District that day a different person, and one of the first things I vowed to do as a result was look into cochlear surgery.
I had heard of it, but had no idea whether it would work for me, but instead of making myself a victim, I decided to empower myself. If fate was to rob me of one sense, I would do my hardest to restore another.
And that’s how I found myself propelled onto the world stage, with more than nine million people watching on YouTube the moment filmed by Mum when I heard for the first time. In those first few days my brain was overwhelmed with different sounds and I found that my ears did the job of my eyes, too. If someone left the room to make a cup of tea, my hearing filled in the silence.
I heard the whoosh of the kettle being filled, the click of the fridge opening, the slosh as milk was poured into a mug.
I had never realised until that moment just what the gift of hearing would bring me: those small, insignificant sounds coloured and heightened my life, making my flat world three-dimensional.
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SO, as I became accustomed to hearing, I built up a library of sounds. And in those exciting first weeks and months, I didn’t notice that my sight was slipping away from me.
My focus had been hearing life, not seeing it: the roar of the crowds at my first football match; the moving songs of my first West End show; the sounds of faraway cities such as Hong Kong.
And among all of this there were the little things that meant the world: Little Casey running into my house so proud in her grey skirt and royal blue cardigan to tell me about her first day at school. While I hung on every word, I realised I could barely distinguish between the colours of her uniform.
But I had come to a wonderful realisation: going blind was no longer the matter of fierce regret it once was because I had Casey’s sweet voice as compensation.
So, losing my sight no longer fills me with dread because now I have another sense to compensate.
That’s not to say I don’t wish that this progressive illness wouldn’t just stop in its tracks or that there wasn’t a nother operation available that could halt or even reverse its progress.
But I have reached an equanimity: there is no point in worrying about what I can’t control.
There is, instead, happiness to be found in the places I’d like to visit: Glastonbury festival this summer; working my way around the Seven Wonders of the World; dancing on a beach in Rio.
And the simple wonders of life: the faces of children lighting up this autumn when I take hearing aids to Bangladesh.
I might be going blind, but life feels exciting because I’ve been given the impetus to enjoy it while I still can. That makes me the lucky one.
So, I savour even the onset of my parents’ greying hair because it means I’ve kept my sight for long enough to see them grow old.
I just hope, too, that my eyes serve me long enough to see Casey grow up a little more, to see if she ends up looking more like her mum or her dad.
I’ve spent this past week in Ibiza with Casey and Mum, and while others might tire of her endless One Direction inspired dance routines, I am thrilled by every single one of them.
Because — just like with the sunset — who knows how many of them I have left?