Jodi Picoult interview: Brittle angels

Published on Friday 17 April 2009 15:11

FAMOUS for exploring the darker side of life, Jodi Picoult – second only to JK Rowling in the bestseller list – has turned the spotlight on the children for whom just a sneeze or a cuddle could crush their fragile bones.

THINGS break all the time. "You can break a record, a horse, a dollar. You can break the ice. There are coffee breaks and lunch breaks and even prison breaks. Day breaks, waves break, voices break. Chains can be broken. So can silence and fever," so says Charlotte, as she recalls the night her daughter Willow was born. She also notes that promises break. Hearts break.

Charlotte is the mother of a child born with a severe and progressively deforming condition: type III OI – medical shorthand for osteogenesis imperfecta, a collagen defect that causes bones so brittle they might break with a stumble, a twist, a sneeze or an over-enthusiastic cuddle. She is also the creation of the international best-selling author Jodi Picoult.

And the debate at the heart of Handle With Care is another of those emotional minefields Picoult has become famous for treading. Charlotte initiates a wrongful-birth lawsuit, hoping that the settlement will allow her to take care of Willow's needs. And as ever with Picoult, there's a twist and an ethical conundrum – the obstretician Charlotte is suing is also her best friend.

Like all of her books, Handle With Care began with Picoult asking herself a question. "The 'what if' came when I read about the parents of a mentally retarded child suing for wrongful birth in the state of New York," she says. "They won several million dollars. I couldn't believe it – I felt it almost viscerally. How could you say you wish your child was never born? Of course, when I did my research I discovered that was not the case. People do this because they want to give their imperfect child a perfect life.

"They do this to get the money to give their child everything they need, because in America insurance doesn't cover the raising of a disabled child. I wanted to write about a child that was 100% mentally able, and hit upon OI – it's a tough life because of the hundreds of bone-breaks, but mentally these kids are often way smarter than their peers. So when you stand up in court and say, 'I wish my child had never been born,' I'm asking, 'What if your child can understand you?'"

The 42-year-old author is ensconced in the New Hampshire home she shares with her antique dealer husband, Tim van Leer, and their three teenage children, Kyle, Jake and Samantha. Yet for all that her home life resembles the American dream made reality, her novels reside in altogether more emotional and psychological territory – from My Sister's Keeper (a Richard & Judy Book Club choice in 2005) to Nineteen Minutes, about the aftermath of a school shooting (which came out only days before the Virginia Tech massacre in 2007). Last year, Change of Heart was the second of Picoult's books to debut at number one on the New York Times bestseller list, and has sold three million copies in the US alone. In Britain, she has had six consecutive number ones and now outsells all other female adult authors, ranking second only to JK Rowling in terms of copies sold.

On June 28, the film version of My Sister's Keeper, which is told from the perspective of a teenage girl conceived through IVF as a perfect tissue-match for her leukaemia-stricken sister, will be released. Starring Cameron Diaz, Alec Baldwin and Jason Patric, it is directed by Nick Cassavetes, and is the fourth of Picoult's books to be filmed – the others were TV movies.

In Handle With Care, she employs five voices – the sixth, in the final chapter, belongs to Willow, a child who may be fictional but who, like every child, makes you laugh and reminds you that strength is far more than a physical measure of stamina. Folded into the narrative are pastry-chef Charlotte's recipes, indicating that most things, including her daughter, are greater than the sum of their parts – as all the parents and children with OI showed Picoult when they let her into their lives.

People like Kara Sheridan. "One of the most inspirational women I have ever met," says Picoult. "She's a scholar studying body-image and self-esteem for disabled teens. She's an athlete – a swimmer who has broken records and who hopes to compete again in the next paralympics.

"She's about to get married to a wonderful, adorable guy. And, oh, by the way, she also has type III OI. She's showing the world that no one can be defined by a disability and that nothing is ever impossible."

WHERE DOES IT COME from, this desire to write about such suffering, about the dark side of life? "I think it's precisely because my own life is so happy, so filled with light, love and contentment," says Picoult. "Although I really don't want to sound smug about it, I'm very blessed."

Brought up by a Wall Street securities analyst father and a pre-school teacher mother, Picoult graduated from Harvard and then took a degree in creative writing at Princeton. She got a job writing bond portfolios, and also started writing in her spare time. Her books are now published in 34 languages in 44 countries. She is driven to write, she says. "I feel I'm able to get rid of any demons lurking in my psyche through my writing, which leaves me free to create all of this and to enjoy our family life, stepping away from all the fictional traumas and the dramas. "If I write about family in crisis, then I won't have to live through it, I guess."

Picoult spends months doing rigorous homework for her books. For Handle With Care, she did intensive medical and legal research, while for Nineteen Minutes she even learnt how to shoot a gun. A local police captain taught her so she could describe what it feels like to handle firearms, how your hand shakes uncontrollably when you run while shooting. For previous novels, she has visited death row (Change of Heart), stayed on an Amish farm (Plain Truth) and camped in the frozen wastes of the Alaskan tundra in temperatures of –38C (The Tenth Circle). For Nineteen Minutes, she also met survivors of the Columbine homicides and of other school shootings.

Meanwhile, Picoult fans will be delighted to learn that she has finished her 2010 novel House Rules, about a boy with Asperger's Syndrome who is charged with murder. "You know, the only reason I can write what I write is because I don't live it," she says. "I wouldn't be able to write about any of these painful subjects with so much emotion and, I hope, integrity, had they happened to me.

"I am so fortunate. I can walk on the dark side knowing that I can come down from my attic study and bake strudel, help Sammy study for her French tests and do the ironing – if my husband hasn't got around to it first. Thank God for him. Without Tim, who I met on the rowing team at college, I couldn't have written one book, let alone my 17th."

None the less, it's no accident that Picoult has also written six Wonder Woman stories for the comic book series, although she demurs at the suggestion that she's a bit of a superhero herself. She's just very organised, getting up every day at around 5.30am to go for a three-mile walk. Back home, she showers, bakes, gets the children off to school and sits down at her computer. She writes every day until 3.30pm, when she becomes a mum again – unless she's on a book tour.

PICOULT'S BOOK WILL STRIKE a chord with families all over the world, none more so than that of little Emily Kidd. Like Willow, Emily has type III OI. She also has a smile that sparkles with laughter, but it's her big brown eyes that captivate. They dance with mischief – just like those of any little girl talking delightedly on the eve of her fifth birthday party. She hopes there will be cake – and lots of it. There might be presents too, she observes as she chatters merrily in her Edinburgh home.

What toys would she like to receive? "Oh, my favourite toys – books," she replies, as her mother Melanie envelops Emily's two-year-old sister Zoe and nine-month-old brother Jack in her arms. Melanie Kidd would give anything to be able to hug Emily too, but while her eldest child conducts a lively conversation, her mother explains that there is one inescapable difference between Emily and her siblings. She is as fragile as a soap bubble – just like Picoult's character Willow.

Indeed, the little girl was born with so many damaged bones that Melanie can't remember exactly how many. She had a fractured skull, several broken ribs, a broken arm, a broken collarbone and broken legs. Much of the damage was caused during her delivery, "but my poor baby had also been fracturing inside my womb, where she must have been crying with pain," says 32-year-old Melanie, whose daughter had to be carried around on a pillow for months. In the years to come, she faces more pain.

Melanie lives in an immaculate end-terrace house with her husband, Stephen and their three children. The front garden is littered with colourful plastic toys. Only Emily's outsized pushchair offers a clue that a child in this bright, sunny home has special needs.

The heartbreak came, says Melanie, one hour after Emily was born at Edinburgh's Simpson Memorial Maternity Pavilion. The Kidds had no idea that their much-longed-for first baby had brittle-bone disease. "I had what I thought was a completely normal, healthy pregnancy," says Melanie. "I had a 12-week scan and all was well, so I needed no more checks.

"I went easily into labour; then the problems began. Emily wouldn't come out. So they gave me drugs and then used forceps to deliver her. It was very, very apparent at once that something was terribly wrong – her limbs were misshapen and her head was big and misshapen too. It was such a shock – Doctors using words we had never heard before, like 'osteogenesis imperfecta'. What was that? Surely brittle-bone disease only affected elderly people or menopausal women? It emerged that if I'd had another scan they would have picked it up, because brittle bones are almost transparent."

Genetic testing eventually revealed that Emily's OI was caused by a spontaneous mutation: a chromosomal abnormality that occurred when she was conceived, though Melanie says neither she nor her husband has a family history of the disease, and their two younger children are both strong and healthy.

There was a one in 27 chance that the Kidds might have another child with brittle-bone disease. "I don't know what we would have done if that had happened, because we knew we would never be able cope with two children with special needs," says Melanie.

They spent three weeks in hospital with baby Emily, in a black hole of despair. "We just disintegrated. Not just Stephen and me, but my parents and his folks. In the neo-natal unit, they told us Emily would have no quality of life, that she would never be able to sit up and support herself, that she would need 24-hour care and that she would lie in bed on her back for the rest of her life. We were told to be prepared for her to die.

"We had no hope. Then we met Louise Bath, the specialist who has become Emily's consultant at the Sick Kids hospital. She gave us hope and has been absolutely wonderful. Until we talked to her, we had thought this was the end of our lives as we knew them.

"We also thought we would never be able to have any more children. As an only child, all I had ever wanted was a home filled with noise, lots of children shouting and laughing," she says.

Most heartbreaking of all was the fact that Melanie could not have skin-to-skin contact with her baby. "There was a long grieving process to go through. I was grieving for the healthy, perfect child I felt I didn't have. It was like a death. I was a first-time mum. I didn't know how to look after a healthy baby, let alone a sick one. For a while, Emily's illness became all-consuming."

As Emily got older, she became angry. She was a very frustrated little girl because she couldn't move the way she wanted to; then she had some communication difficulties – nothing to do with the OI. But she has had intensive speech therapy, and that, coupled with going to nursery and being around other children, has helped her no end. "She's so happy and settled now. She's no longer Emily in the wheelchair, she's just Emily who goes on play-dates and who loves swimming.

"I do think she has an acute awareness of her condition," says Melanie, "but she's a confident, outgoing little girl with a good sense of humour – and so tiny."

In fact, Emily is doll-like, smaller even than her baby brother, and will never be able to walk. Although she can shuffle around on her bottom, she will always need to use a wheelchair. Yet this wee girl's courage and spirit are immense. "Tell Jackie why you have to go to see the doctors and nurses at the Sick Kids hospital," prompts her mum. "I have soft bones," says Emily dismissively, with a smile that could melt your heart. "My bones are red – I've seen pictures of them." I tell her that sounds very special since the rest of us have white bones. "I know," she says cheerfully. "Mine are different. Anyway, I like going to the hospital; I get to make glitter pictures and stuff."

Emily makes you realise how accurate Picoult's portrait of a child with brittle-bone disease is. And as the novelist points out, since such children are unable to run around with other youngsters, books and computers become their playground. "Emily's so intelligent," says Melanie. "She's really clever, and her teachers say she has an aptitude for art. She's also dead cheeky with it."

Picoult is in Scotland next month, when Melanie would like to meet her, though she doesn't think she has the courage to read the book. "There was nothing wrongful about Emily's birth," she says. "Our lives would be so much poorer without her, although I remember when she was born, wishing it would all stop. Now, though, she's a child to be proud of – she's here and she's staying as part of a loving, normal family. Everyone loves her. She's irreplaceable."

• Handle With Care, by Jodi Picoult (Hodder & Stoughton, 17.99). Jodi Picoult is at the Gliterary Lunch ([e-mail]), at Oran Mor, Byres Road, Glasgow, on May 7, followed by a signing at Waterstones (01355 271835), The Plaza, East Kilbride, at 5pm. On May 8, she is at Borders (0141 222 7700), Buchanan Street, Glasgow, 12pm. For further information, find out about the Friends of Edinburgh Royal Hospital for Sick Children's New Pyjamas campaign, (0131 659 7010, www.newpyjamas.org)