Monday, March 26, 2012

BLOG TOUR: Guest Post + Giveaway with Katie Dale; the author of Someone Else's Life

Katie Dale joins us today for a fabulous, deeply touching and inspirational guest post about what made her decide to write about Huntington's Disease in her recently released (and absolutely wonderful) YA novel, Someone Else's Life . Katie's guest post is one of the most interesting ones I've posted here so far, so be sure to read it and let me know what your thoughts are! I hope you'll enjoy it as much as I did! 
And don't forget to enter to win a copy of Someone Else's Life!

About the author:
KATIE DALE studied English literature at Sheffield University, spending a year at the Univeristy of North Carolina at Chapel Hill, followed by a year at drama school, a national Shakespeare tour, and eight months backpacking through Southeast Asia. Her newest novel is “Someone Else’s Life”.

Where to find Katie Dale:

What made you decide to write about Huntington’s disease in “Someone Else’s Life”?
by Katie Dale

     When I started writing Someone Else’s Life, I had never heard of Huntington’s disease. I was writing a story about Rosie, a girl who was deliberately swapped at birth, and had my scenario all worked out: After a string of miscarriages, Rosie’s “mum” Trudie goes into labour, just as her husband is killed in a car-crash. Trudie is so heart-broken, her midwife, Sarah, can’t face telling her her new-born baby is extremely ill and is also unlikely to survive the night. Then Sarah discovers a healthy new-born abandoned by her teenage mother and decides to switch the babies – there by both saving Trudie additional devastating grief, and giving an unwanted baby a loving home.

But why would Rosie ever discover the truth?

     I decided that the reason could be genetic – that if Trudie died of a genetic illness, Sarah would feel compelled tell Rosie the truth, to reassure her.

     So I started researching genetic diseases and stumbled upon Huntington’s disease, a hereditary condition with symptoms similar to the physical effects of Parkinson’s plus the mental decline of Alzheimer’s. Symptoms generally develop between the ages of thirty-fifty, and including jerky, uncontrollable movements, mood-swings, weight loss, dementia, and usually result in death from pneumonia, heart disease or physical injury.

     This seemed to fit what I was looking for – a late-onset hereditary disease, which you can be tested for from age eighteen – the age Rosie was about to become. However, I was surprised that while there are around 6,000 reported cases in the UKit’s thought that there may actually be up to twice as many cases, because people often hide their condition, are mis-diagnosed, or even decide not to be tested.


Because there is no cure.

This got me thinking. What would Rosie do? What would I do, if I were at risk?

     What would you do? Knowing that you could never change the results – that there are only two possible outcomes:

a) Negative – a normal, healthy life.

b) Positive – a life knowing you’ll get HD, filled with tough choices:

Would you have children, knowing they’d be at risk?

Would it be fair to get married, knowing your partner will probably become your full-time carer?

If you already have children, what then? Would you tell them, or keep it secret?

What if your parents or siblings test positive but you don’t – how would you feel? Relieved?

Or guilty?

     I decided to find out more, and through a Huntington’s email list-serve I heard many moving personal stories – children avoiding their own parents because they couldn’t stand to see their own future enacted before them; pensioners caring for their grown-up children with HD; pregnant women forced to choose whether having children at risk of Huntington’s is better than having an abortion.

     But it was when I met people face to face, at the Huntington’s Disease Association, that those stories truly came to life, and I realised that amid all this grief and devastation lives the most incredible hope, determination – and love.

     Teenage Matty Ellison knows that he’ll get HD, but instead of wallowing in self-pity and bitterness, he is one of the most upbeat, pro-active people I’ve ever met. He runs dozens of marathons, raising money and awareness for Huntington’s disease, and is about to launch The Huntington’s Disease Youth Organisation – a website committed to supporting young people affected by HD. His Facebook page insists he is “just 1 more person”. I disagree.

     Then, at the annual dinner-dance I watched in awe as crowds of people touched by Huntington’s, danced and laughed freely, surrounded by people who understood what they’re going through, who didn’t stare or judge them, but instead just joined them, relaxing and enjoying themselves.

     It’s very easy to think of Huntington’s just as a devastating disease, but it’s a disease that affects people – individuals – and watching how those individuals and their families handle the disease – with courage, with humour, with vitality – was the most impressive, inspiring and humbling experience of all.

     So I’d found the compelling reason I needed for Sarah to tell Rosie the truth about the baby-swap – but suddenly, instead of being a novel centered around one girl discovering her true identity, Huntington’s disease became the beating heart at the centre of my story, which consequently evolved into a much deeper, more emotional tale about secrets and lies, devastating ethical decisions, the complexities of family, and the enduring strength of love through any adversity.

     I had been quite nervous about attending the HD meetings – fearing that as an observer I might be intruding. But as Cath Stanley, head of care services at the HDA commented, ‘HD is always thought of as a very rare illness and there's little support for people.’ Consequently,everyone I met was really welcoming, certain that a novel about Huntington’s disease would not only be helpful for those at-risk, but in broadening public knowledge and understanding of this too often hidden and stigmatised disease.

     I hope they’re right. A portion of the proceeds of Someone Else’s Lifewill be donated to the Huntington’s Disease Association and the Huntington’s Disease Society of America

I hate it when people tell me what’s good for me – have a nice cup of tea, it’ll make you feel better. Go on, Rosie, have a good cry – it’s good for you. Yeah, coz that’ll bring my mother back.
I get up and cross to the stereo.
‘Look, Rosie, this isn’t easy for any of us, you know?’ Sarah sighs, smoothing a hand over her frazzled ponytail. ‘But you shouldn’t hide away like this – it’s Christmas Eve. You should be with people – family. I know you’re going to your Nana’s tomorrow, but she’d love to have you to stay with her – not just for the holidays—’
I flick through the noisy radio stations.
I can see Sarah’s reflection in the glass cabinet. She looks tired, drained – and old. Sarah’s never been old. But I don’t care. How can she be like the rest of them? Patronising and clich├ęd and telling me what to do? I turn the volume up high, and a choir belts out “Joy to the World”.
‘Rosie!’ she battles with the racket. ‘Rosie, turn it down!’
‘I don’t like that one either!’ I yell back. ‘How’s this?!’ “Rockin’ around the Christmas Tree” replaces the choir. I turn the volume higher. “Have a happy ho-o-liday!”
‘ROSIE! Turn it down!!’
‘What?!’ I yell back, cupping my hand to my ear. Maybe now she’ll know how it feels.
‘ROSALIND KENNING, YOU LISTEN TO ME!!’ Sarah yells, and I flick the radio off, her voice echoing in the sudden silence as I turn round. She is flushed and breathless, the light from the hallway behind her showing up every frizzed hair like a frenzied halo.
‘I’ve come to a decision,’ I say. Calmly, rationally. ‘I need to know.’ I take a deep breath. ‘I need to know if I’ve got Huntington’s.’
There it is. Out in the open.
The color in Sarah’s cheeks melts away, leaving her pale and serious. ‘Rosie…’
‘I’ve made up my mind.’ I say, swallowing hard. ‘I can’t live like this, not knowing. I need to know if I’m going to get it too, if I’m going to…’ The words stick in my throat. ‘I need to know the truth.’
‘Rosie,’ Sarah swallows, steps closer. ‘You have to think about this, take some time…’
‘I have.’ I round on her. ‘Don’t you think I have?!
‘Look, I know that with your mum gone everything’s strange and scary—’
You don’t know anything!’ I scream at her, my legs trembling. I’ve never shouted at Sarah, never yelled, never… but suddenly all the feelings that have been bottled up for too long gush out in one big mess. ‘You don’t know,’ I shake my head. ‘You don’t – you can’t…’ I look away.
Sarah sighs. ‘All I’m saying is that it’s too soon to be making choices like this, to take the test – ’
‘Too soon?! When do you want me to find out? When I’ve got kids too? I’m not a child anymore, Sarah – I’m nearly eighteen!’
‘I know, Rosie, but this is a life-changing decision we’re talking about here. There’s no cure, and once you know, you can’t go back...’
‘I can’t go back anyway!’ I choke on the words. ‘And no, actually. It’s not a life-changing decision because nothing actually changes, does it? It’s already decided whether I live or die – I’d just quite like to know which it’s going to be, okay?’
Sarah looks beaten, hopeless.
‘What kind of a life can I have otherwise?’ I ask quietly. ‘Not knowing? Not knowing if one day I’ll end up like—’
‘You won’t.’
‘Sarah, it’s hereditary,’ I sigh. ‘It hangs on the toss of a coin.’
‘No,’ she takes my shoulders gently, her eyes so sad. ‘Rosie, sweetheart, you don’t have Huntington’s. You don’t need the test.’
‘I’m not asking your permission, Sarah.’ I tell her quietly. ‘I’ve got an appointment at the clinic on Wednesday, and – ’
‘No,’ she says. ‘You don’t understand.’ She takes a deep breath. ‘Rosie, you don’t have the disease.’
‘Sarah,’ I say gently, as if to a child. ‘There’s a fifty per cent chance that I do – it’s a genetic fact.’
‘That’s what I mean.’ Sarah says slowly, not looking at me. ‘There is no chance.’
‘I – ’ I blink. ‘ – I don’t understand...’ 
‘Rosie...’ She sighs, rubs her hand over her brow. ‘Oh, God!’
I don’t move. Don’t dare breathe.
‘Rosie, you don’t have the disease – you can’t possibly, because – ’ Desperate pause. Swallow. Breath. ‘– Because Trudie wasn’t your mother.’
Excerpted from Someone Else’s Life by Katie Dale. Copyright © 2012 by Katie Dale. Excerpted by permission of Doubleday Canada, a division of Random House of Canada Limited. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

Check out the rest of the tour:

Monday, March 26th: Guest Post at Evie Bookish
Tuesday, March 27th: Q&A at Xpresso Reads
Wednesday, March 28th: Guest Post at All I Ever Read
Thursday, March 29th: Q&A at Book Nerd
Friday, March 30th: Q&A at Midnight Bloom Reads


Random House Canada has generously offered to give away one hardcover copy of Someone Else's Life!
Open to: CANADA only
Ends: April 10th

Leave a comment on this post and enter through Rafflecopter (after the page break)

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Wendy Darling said...

Wow, that's an intriguing excerpt. Thanks for sharing it with us!

Wendy @ The Midnight Garden

Wendy Darling said...
This comment has been removed by the author.
Lexie said...

I love this. I love Katie's reply, and I really, really love the excerpt. The fact that she spent time amongst those with the disease makes me want to read this even more than all the gushing reviews I've seen; I feel like so many authors nowadays will write about a disease they've only researched, not having the faintest idea what those with this disease actually feel like, that they're still human beings--that the disease doesn't define their everything. I think, if she's lived with them, she probably captured it perfectly.

And the excerpt is fantastic. Tense, dramatic, and very emotional. I suspect it'll be even more awesome when I've read it along with everything that came before. Can't wait to check this one out. :D

Krista said...

Love Love thanks cannot wait for this one!

tinkerbell the bipolar faerie said...

I love this book. I got an ARC from NetGalley and just ate it up. Great, great read.

Na said...

I am curious about getting more insight on Huntington’s disease. I find it fascinating that you attended HD meetings and observed how people dealt with it. I'm sure it was an eye-opening experience. Thank you for sharing an excerpt.

PuttPutt1198Eve said...

Sounds like an intereting book with the Huntington's angle and also the switching of the babies. The author really had a lot to think thru while writing it just to keep all the elements clear in the reader's mind! Thanks for the giveaway!!

Bonnie said...

I'm not sure if it is even possible but this guest post and excerpt has made me even more excited to read this book. I really don't know much about Huntington's but I feel like with the amount (and types) of research that Katie has done the reader will get an authentic look at how this disease can affect a family.

Thanks so much for the giveaway Evie this is an absolute MUST READ for me! :D

Asheley (@BookwormAsheley) said...

Good gracious, that was GRIPPING.

First of all, HOORAY FOR studying at UNC - NORTH CAROLINA!!! I'm in NC. YAY!!

Secondly, a very close friend of mine, Meredith, was adopted by a wonderful family who found out late in life that the father had Huntington's. He had such a hard time and it was so tough to watch. Meredith had a sister and brother, and all three of them wondered would they have the disease too? Through the decision to test in young adulthood, it was found that the brother and sister carried the gene and it was possible for them; it was at that time that Meredith found out she was adopted. She felt SO GUILTY. Their family struggled with this quite a bit.

Thanks for this guest post. It was really inspiring and touching. Good luck to everyone entering!!

Thanks Evie! xoxo

Tore said...

This sounds like a very good read. I can't wait to read the book. Thanks for the giveaway.

Alicia said...

Wow! What an excerpt!! Totally got my attention and I'm adding this to my TBR list for sure. I also loved hearing how Katie did her research to come up with the story line. It will make the read even more amazing to know the time she took to learn about HD.

Thanks for the giveaway!!

Bookish in a Box said...

When I first heard about Someone Else's Life, I was bit put off, both by the baby-swapping and the hereditary disease (former bad book experience), but after reading Katie Dale's thought process behind the novel, I'd like to give it a try. It sounds powerful.

Emilie said...

I've been wanting to read this book for a while now and this just makes me want to read it even more. Thanks for the great giveaway!

Christina said...

What a wonderful way to bring light to such a devastating disease.

My uncle had Huntington's and there's a stigma attached to it that I would love to see vanish forever.
Books like this one will help with that. :)

Kelly said...

I didn't know much about HD until the tv show House dealt with it in a main character line. It's good to see a YA novel that deals with HD and can get the info out to the young communtiy.

Kelly said...

Oops, saw that CA only after entering. That's what I get for being on my computer prior to ingesting any caffeine, lol!

Carissa St. Amand said...

I love how your novel grew and evolved from such a little story to something so much more. Thanks you for donating part of the proceeds as well!

Blackest_Night_Reads said...

This is the first I've heard of this book, and now I'm really excited for it. Thanks for including this on your blog. I love learning about new books.

Also, thanks for the giveaway!

aurora M. said...

I love when little tid bits are included! Loved the excerpt. Thanks for the great post.

SweetShenanigans said...

The excerpt left me wanting to devour the whole book! Right now I'm loving these types of coming of age books

Stephanie Verhaegen said...

Great excerpt! Love it. :)

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