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Emily Owen | | Leicester, UK
Positive Role Model (Disability)

Until I was 16, I had no idea that my body was riddled with tumours.
I was sporty, musical, academic, and life was good.
Six weeks before my 17th birthday, I was diagnosed with a condition called Neurofibromatosis Type 2 (NF2), where tumours grow on nerves anywhere in the body.
Following brain surgery to remove one of these tumours, which left me deaf in one ear, my 17th birthday was marked in Intensive Care, my parents told that I wouldn't live. Lengthy rehabilitation, during which I learned to walk again, and more, followed.

Determined to put hospitals behind me, I returned to college, sat my A-Levels and went on to university where, half way through my first year, I was told the brain tumour had grown back. Further surgery damaged my facial nerve, leaving half my face paralysed.

Two years later, a surgeon said to me 'we either operate and you lose your hearing, or we don't operate and you lose your life'. A large tumour was removed from the other side of my brain, and when I woke up from that surgery, I was in a silent world. I was terrified.

I've had more than 20 surgeries, and counting. Each one robs me of something; sensation, movement, ability. The spinal surgeries left me unable to move from the waist down, though I am now able to walk (limp) with the aid of a crutch.

While I have no choice about having NF2, I do have a choice about how I'll respond to it. I choose, as far as possible, not to let it win. So when it ripped up my life plans of a career in academia and education, I turned to writing.

I've published 7 books to date, one of which is my memoir, 'Still Emily', which details my life journey. I'm a Christian, and my other books are in the Christian devotional category.
Last year, to my amazement, I won a national award (ACW) for outstanding contribution to Christian publishing.

I am a public speaker, at medical events/Christian events/Writing events, often sharing some of my story.

I work with Universities in Leicester, helping to train and assess students on - or applying for - health care studies.

I am a trustee of Nerve Tumours UK, a charity which works to support those living with the same medical condition as I.

My memoir is subtitled 'Seeing rainbows in the silence', which basically refers to finding something good in every day. No matter how dark life gets, there is always something good to find. Sometimes those good things are signing a book contract, sometimes they are having a soft pillow on my hospital bed.

As I type this, I have a publishing meeting tomorrow followed by surgery the next day. Life is a balancing act. I sometimes ask, half jokingly,'how is this my life?' But it is.

Here's a bit from the end of Still Emily: part of a letter to NF2.

'Dear NF2
I wish I couldn’t write that.
I wish I’d never heard of you....
…. I hate that I can’t hear music.
I miss it.
Every day.
But you didn’t take away my music memory, you didn’t bank on me having music in my heart.
And in my music memory is this song:
You raise me up…
'I am strong when I am on your shoulders
You raise me up to more than I can be.'
‘You’ here are my God, my Mum, my Dad, my sisters, my family, my friends, my medical team.
All of these help me to be more than I can be on my own.
But there is one more ‘you’ and that is…
Yes, NF2, I hate you but I thank you.
You make life difficult but I have learned that people are willing to adapt.
To help.
To love me as I am.
And that love is stronger than you.
You make me weak but I have learned that there is strength in weakness.
You make my body fall apart but I have learned that,
inside that body,
I am still me.
Yes, you affect me, but you don’t define me. .
I am more than you and, ironically, I couldn’t be that without you.
Yes I know that there will be more times when you get me down.
More times when I will discover another lump.
More times when I have to be the gingerbread man in the oven-scanner.
More times when I am told “we need to schedule surgery.”
More days when you decide that, today, you are going to make me feel more ill.
NF2-Flu, I call it and, believe me, ‘normal’ flu has nothing on you.
More days when I need to learn to walk again.
More days when I am surrounded by the ship-wreck you make of my life when I find myself washed up in a different place.
But I will be clinging to a piece of me within that shipwreck.
‘Emily’ will still be there, wherever you take me.
I know there will be more days when you make me cry.
But, just as you’ve taught me to do, I will find rainbows through my tears.
(Not) Yours,

I am staggered to receive this nomination and would like to take this opportunity to thank everyone who helps me be more than I can be on my own - you're the reason I'm here today.


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