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Choosing rainbows ... with a God who doesn't pretend

Emily Owen was a teenager when she was diagnosed with a condition that was to steal her smile, her hearing and her ability to walk. But, as Sharon Barnard discovers, she’s “still Emily” ...

Emily Owen was a teenager when she was diagnosed with a condition that was to steal her smile, her hearing and her ability to walk. But, as SHARON BARNARD discovers, she’s “still Emily” ...

“I love you” were the last words Emily would ever hear her parents say.

They were holding their daughter’s hands as she was being wheeled down to the operating theatre.

Emily knew that when she came round from surgery, she would be deaf.

“Thirteen or so hours later ... I realised what silence means,” she writes movingly in her memoir, Still Emily. “Not what my hearing self of yesterday had imagined it might mean.

“Silence. Nothing.”

In her book, Emily charts the impact of the devastating diagnosis of the rare genetic disorder Neurofibromatosis Type 2 (NF2) on her bright, athletic and musically gifted 16-year-old self.

She describes how she endured risky operations on brain tumours, the first of which would leave her fighting for her life. Then there was the adjustment to facial nerve damage; learning to walk, talk and eat again and, later on, preparing for the terrifying day when she would wake up to a world that was utterly silent. 

“It took a long time to realise that the real me, the me inside, was Still Emily,” she tells me.  “A long time to actually live as Emily rather than Damaged Emily.”

She is honest and open about what she describes as “the two constants” on her journey with NF2: tumours and love – the love of her supportive Christian family and friends, and her heavenly Father.

Was there ever a time when she wanted to rail at God?

“My relationship remained strong, but that is not to say I didn't cry at him: 'this is hard' because I did and do. 

“But I think relationship depends on communication to thrive, and I don't need to physically hear to communicate with God. Unable to hear my friends and family, and not having yet learned how to communicate, that thriving relationship was not so easy.”

I wondered whether her ability to ‘shelve bad news’ which she refers to on several occasions in the book, was really a help or a hindrance.

“It helped inasmuch as it enabled me to get on with daily life, rather than worry about things 24/7,” she says. “The fact that I shelved rather than buried it helped as I was not ignoring it; I was choosing when to acknowledge it.”

Emily, who is now in her mid-30s, talks of her decision early on to “choose rainbows” – to remain positive, despite the long hospital stays, her lip-reading and signing struggles, the falls, the stares, her decision not to bear children because of the risk of passing NF2 on, the knowledge that she will never be able to hear music again ...

Was she still choosing rainbows?

“When I was completing the manuscript for Still Emily, actually! My faithful old computer, having limped along for ages, finally decided to stop. 

“I don't know much about technology. I needed to get my manuscript finished. I was feeling stressed. 

“I went into the shop and got the most helpful, understanding assistant ever. And that was a rainbow, a bright spot in a difficult situation.”

A self-confessed chatterbox with a keen sense of humour, Emily regularly speaks to small groups and audiences to encourage them and also raise awareness of deafness and NF2.

“I think everyone has struggles and they can relate to the fact that I do too. There is so much pressure today to portray 'everything's fine’, but sometimes everything is not fine.

“I say, yes, life's hard sometimes. And we don't have to pretend it's not. But we have a God who doesn't pretend either, a God who says: 'I know it's tough right now. I am right here with you and I am not going anywhere. So you'll be OK'.”

Find out more about NF2 at www.nfauk.org

  • Emily Owen’s book Still Emily – Seeing rainbows in the silence is published by Malcolm Down, price £7.99.

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