The Gift of Perspective by Emily Owen
On May 11th, the ‘On this Day’ part of my
Facebook page was flooded with memories.
It was exactly a year since the launch of my memoir, ‘Still Emily’, and
there were lots of photos recalling the event.
During the last year, a big thing that’s changed since
the launch is, fairly obviously, that people have read the book. Some have been kind enough to leave a review
on Amazon, or contact me directly to give feedback.
What people often comment
on is the final chapter.
You see, my story, as many of our stories are, is one of
happy times, sad times, ups and downs, easy times and struggles, knowing
despair and then discovering hope again.
My story also involves a diagnosis of a condition called
Neurofibromatosis Type 2 (NF2), and the final chapter of Still Emily is a letter
I write to NF2.
Writing to, rather than about, a situation can be very
powerful. Recently, I wrote an article from NF2's perspective and discovered
that giving a situation a ‘voice’ can be powerful, too.
Here is part of the article:
My name is NF2.
Well, Emily’s NF2. Us NF2s are all different. I guess you could say we have
different specialities, different ways of making our presence felt.
Being Emily’s NF2
often feels as though I’m in a battle. I
want to be boss, but so does she; so we fight it out, every day. Sometimes
Emily wins. She wins more often than I’d like, to be honest. But sometimes I
win. It’s great when I win: then it’s impossible for Emily to ignore me. I hate
being ignored, I like to be the centre of attention. But Emily ignores me a
lot, even when I try really hard to make her acknowledge me.
Anyway...I thought I’d tell you about my
day. Not a specific day, just a day. It
could be any day.
6 am I like to wake Emily early these days. She used to sleep for longer
than she does now but, once I’d cottoned on to that, I realised I should wake
her. The best way to do that is with her eyes. I don’t mean forcing her eyelids
open, I mean by
making her eyes sore. Emily’s eyes are really dry and, by 6 am, I can be pretty
sure that the soothing cream she applied before she went to sleep will have
gone. So, when she wakes, it’s not only early but she’s also in pain.
9.30 am I know Emily wants to work on some of her writing today, so that
makes my plan for the day easy: mess around with her ability to focus and
concentrate. Since her brain surgeries – and I have to say, I’m pretty proud of
my efforts here – Emily’s memory and concentration span are a shadow of their
former selves. 3-0 to me.
12.30 pm Well, what a rubbish morning. I tried really hard but nothing worked.
Emily ignored me and got on with what she was doing. 3-1 but at least I’m still
winning and now it’s lunchtime. I’ll score a few easy points here, as Emily
finds eating difficult. She has done ever since one of her surgeries. A surgery
which, I might add, was all because of me. Better make that 4-1.
1 pm Emily is
looking at food and rejecting it. This is great! She can’t eat bread, crisps etc very easily at all.
5-1. Now Emily knows what she can eat, though, so eating is not too much of a problem
most of the time. I’d better give her a point for that, I suppose. 5-2.
5 pm I feel better after my failure this morning. Emily tried to carry on
writing this afternoon but her concentration vanished; by which I mean, I took
it. 6-2. To be fair, though, Emily did stop trying to write before she got too
frustrated with her brain. She never used to manage that, which meant more
points for me as she got angrier with herself. So I’ll give her 2 points I
think. I may be in competition with her but credit where credit is due. 6-4.
Instead of writing,
Emily decided to go for a walk. She forgot to take her crutches but thankfully
I managed to make her nearly fall over as she left the house, which reminded
her to get them. She doesn’t need her crutches indoors but she does outside.
Since surgeries (yes, credit to me again), Emily can’t walk too well. Her legs
are weak and her balance is poor. Which makes it what, 8-4 to me?
6 pm Emily’s niece wanted to sing a song to her. Massive win for me: Emily
can’t hear since her surgeries. 9-4.
But then,
unbelievably, her niece sang the song in sign language, so Emily could
understand. 9-5.
I hate it that
Emily has so many people helping her beat me. It’s not fair: she has medics,
friends, family, strangers. Nearly everyone Emily and I meet is nice. Well,
they’re nice to her. Mostly they ignore me. Except the medics, but that doesn’t
really count, as I’m their job. But even they see Emily more than me. Worse
than that, Emily does too. She didn’t used to. I used to win every day. But I
don’t now. I win some days. But they are becoming fewer. And today is not one
of them. Even I have to admit that Emily and all the people who help her,
together, deserve 5 points. At least. So it’s 10-9 to her...
Feedback, whether positive (mostly) or negative (a bit),
tells me the concept of writing to or from a situation, to or from a
perspective other than a directly human one, is powerful.
Why not try it?
Write a letter to a situation in your life, and see where it takes you.
(The fact that you read this blog is a gift as well. To
me. May is Neurofibromatosis Awareness Month. And you’ve now heard of
Neurofibromatosis. Thank you.)
Emily - thank you for this. What an inspiration you've given me. We can't have children and I'm already planning to try writing about that from the situation's point of view.... Bless you. And I'm so glad you're winning the battle with the NF2, keep going x
ReplyDeleteThank you, Mandy, I really appreciate your words and encouragement. I hope you find writing from your situation powerful, too. And seeing 'NF2' sort of casually dropped in to your comment was wonderful, thank you! :-)
DeleteThanks for this moving post, Emily. I don't know what NF2 is exactly but life is obviously a struggle for you and you sound very brave in tackling it head on.
ReplyDeleteThank you. If you are interested (and there is no pressure to be!), you can read a bit more about NF2 here: https://www.nfauk.org/what-is-neurofibromatosis/nf-type-2
DeleteI've never heard of NF2, but I love the idea of NF2 writing a diary. It's like a good fiction antagonist - they are the hero of their own story.
ReplyDeleteI'm pleased to hear you have people helping you, and that you have some wins. Hopefully you will have more than the NF2.
Yep, NF2 is an antihero alright, well spotted! Thank you for your encouragement.
DeleteWow! Great post and really identify with so much of that. Love the way you wrote from situation too, unique perspective! Bless you.
ReplyDeleteThank you, I appreciate that a lot.
DeleteThanks for this Emely, very well written.woul love to read more
ReplyDeleteBlessings
Antonia
Thank you. You can read more of my story here if you'd like to: http://www.eden.co.uk/shop/still-emily-4379604.html
DeleteThank you for showing me a new way to address challenges. May your honesty and courage inspire others with chronic health conditions.
ReplyDelete