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?
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.‘Rosie…’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 clichéd 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
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