1 in 30,000 – The Picture Speaks

Yesterday, I did a radio interview and, as you can see, I was in bandages as I did.
I realise that this news is sooooo yesterday – literally and otherwise – but there’s a reason I’m mentioning it again.

This picture speaks a thousand words about my life. Six days before it was taken, I was in an operating theatre, having surgery – hence the bandages.
I have a rare medical condition, called Neurofibromatosis Type 2 (NF2), which means I grow tumours on nerves anywhere in my body. They often need to be surgically removed – hence the bandages.
Sometimes the bandages are around my head, like the time surgery caused me to lose my hearing and my facial nerve.
Sometimes they’re on my back, or leg, like the time surgery forced me to permanently replace the word ‘walk’ with ‘limp’ when referring to myself.
I could go on, but I don’t want to ignore the other words the picture speaks. In fact, I’m determined not to ignore them.
I wrote in my memoir, Still Emily:

NF2 invites me to exist.
Not only to exist.
But to do so in a world dominated by itself.
I refuse the invitation.
I want to more than exist!
I want to live.

Part of living, for me, is writing and speaking.
I am privileged to write books. Yes, most of my books have been written in part from a hospital bed, but I still get to write. And that’s a real honour.
I am privileged as a speaker. I speak to many different groups – faith based, medically based, education based – often sharing my story. I’ve also done a little bit of radio (the picture speaks!) and television. Yes, some of these are done despite bandages, but I still get to speak.

I’m not the only person living with NF2. The condition affects 1 in 30,000 people. That’s still not many, I know, but there are more than just me. I’m not the only one who has a voice, of sorts. But I do happen to be ‘1 in 30,000’ who has been nominated for an award.
To be nominated for Positive Role Model is such a surprise, and is overwhelmingly special. Even if no one votes for me, it’s special. Thank you.
If you would like to vote/add your nomination for me, though, please do (link below). It would mean a lot. Perhaps, together, we can make Neurofibromatosis Type 2 – a pretty much unheard-of condition – a bit less unheard.

‘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, parents, my sisters, my family, my friends, my medical team.
All of these help me to be more than I can be on my own. (Still Emily)

Maybe you do, too.

Nominate here to help make NF2 less unheard.

Thank you.

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