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 – thereby 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 UK it’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 centred 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.
Someone Else’s Life by Katie Dale is published by Simon & Schuster, February 2nd 2012
A portion of the proceeds will be donated to the Huntington’s Disease Association and the Huntington’s Disease Society of America