Alice Martineau was beautiful, gifted and incredibly determined. She modelled in her teens, got a first class degree in English, and was an exceptional singer. The power of her voice and lyrics meant that when she performed, the likes of Robbie Williams were in the audience.
To anyone who met her, the idea that Alice was chronically ill seemed preposterous – which is exactly what she wanted people to think. But her sunny nature hid a sad truth: Alice had cystic fibrosis, a cruel degenerative lung condition. She had been diagnosed at birth and given a life expectancy of just 10. Yet she rarely talked about it and did everything she could to make it invisible. Indeed, her unique combination of talent and resolve led to a record deal with Sony, signed shortly before she died in March 2003, aged 30.
June is a noteworthy month for CF sufferers and their families. The next few days (June 19-25) mark CF Awareness Week – an annual event dedicated to raising awareness. While on June 26, the charity CF Trust will hold a day of action for Orkambi, a precision drug that treats the most common CF mutation (which affects 40 per cent of suffers in the UK) and which has been licensed for use in the UK, but is not yet widely available on the NHS.
It is also the anniversary of Alice’s death – she would have celebrated her 45th birthday on June 8. To mark the occasion, friends and fans shared recordings of her music on social media – among them Alice Peterson who, earlier this year, published a fictionalised version of the young singer’s extraordinary life.
In June 2002, Peterson read an article that Alice had written for the Telegraph magazine while on the waiting list for a heart, liver and lung transplant. For the novelist – whose own tennis career was cut short at 18 after she was diagnosed with rheumatoid arthritis – it resonated. She initiated contact and an email exchange followed, but Alice’s health was already declining and the correspondence petered out.
However, a couple of years ago, while walking her dog and mulling over the subject of her next novel, Alice came into her mind. “I called my agent on the spot. I don’t think I’ve ever felt quite so passionate,” Peterson says. “Of course, that was only the start – I had to get her family to agree.”
Cystic fibrosis is the most common genetically-inherited disease in this country, affecting more than 10,800 people. Thick, sticky mucus builds up in the lungs, inviting infection and leading to progressive damage. Mucus also clogs the pancreas, which then fails to produce enough digestive enzymes, leading to malnutrition and growth problems. Four per cent of the population carry the CF gene, and if two carriers have a child they have a 25 per cent chance of giving birth to a baby with CF. Her brother Luke was lucky. Alice wasn’t.
In spite of her illness – probably because of it – Alice was strong-willed. While at King’s College London, she studied from home after an earlier attempt at student life had resulted in her hospitalisation. And although singing sounds like the worst possible career for a young woman with a lung condition, years of coughing had given her a powerful diaphragm. Alice could belt out a tune.
Her voice had a unique, husky quality, but it is her lyrics that carry the emotional punch. “She was a party girl, an exhibitionist,” says Luke, “but behind it was an attempt to articulate what she felt about dying, and a desire to leave something behind.”
Alice’s achievements would be remarkable for anyone; set against the backdrop of CF, they were astonishing. Following the Telegraph article, she signed with Sony in August 2002, a deal that prompted music executive Nick Raphael to say, “never did I feel more strongly about signing an artist”. Her album, Daydreams, was released that November and the BBC made a documentary about her, called The Nine Lives of Alice Martineau.
It seemed like Alice’s dream was coming true. But the timing couldn’t have been worse. Shortly after signing her record deal, she spent a stretch in hospital and was too ill to take part in the publicity for her album, or go on tour. But Alice never gave up. As she told Marie Claire magazine, not long before she died, “That’s when I’m happiest – on stage. When I’m playing my music, I forget about everything.”
Towards the end of her life, Alice spent four hours a day managing her condition. She had what the family called “funnies”, when she coughed up as much as four pints of blood, usually accompanied by seizures. She had cirrhosis of the liver, diabetes and nerve damage that affected her co-ordination. In addition to operations to remove part of her intestine and lung, she had four surgeries to block bleeding arteries and another to close a hole in her heart.
At the time her music career was taking off, her eyesight was failing and she was going deaf. She had to be thumped on the chest, or “percussed”, three times a day to bring up the mucus filling her lungs. One CF sufferer has described this as like sitting in a rowing boat full of water and trying to bail out with a teaspoon.
When Peterson contacted the family with her idea for a novel, she found them receptive. Luke, in particular, had long felt that Alice’s story deserved a wider audience, and thinks the decision to fictionalise her life was the right one given the very real and raw feelings involved. The book may be sad, but it is also celebratory. “I loved Alice’s fearlessness,” says Peterson. “She didn’t talk herself out of doing things because of this terrible curfew. She went for it.”
The tale of how she wins a recording contract is a major part of the plot, but the emotional thrust of the book is Alice’s love affair with the character of Tom, based on her real-life boyfriend Al Haig-Thomas, who she started dating several years before her death. He is now married with three children, but remains close to the Martineau family.
“He is an extraordinary man,” says Luke. “He was ‘the one’. But he knew their relationship was doomed. Walking away from someone he loved would have been tragic, but staying with her was extraordinarily painful, too.”
Understandably, Haig-Thomas declined to speak to me for this article. But he agreed to meet Peterson when she was writing the book. “He was apprehensive, and very emotional,” she remembers, “he didn’t want to go too deep.”
The other aspect the author captures so well, is the importance of family. As well as Luke, Alice was extremely close to her mother, Liz.
Like her daughter, Liz is determinedly upbeat. She loves talking about Alice and says it brings back happy memories. “I think I probably took a bit of Valium,” she laughs, when I ask how she coped. The only time her face clouds over is when she speaks about Alice’s death, which happened at home in Kensington.
“It was so ghastly,” she says. Alice’s funeral was private, but a memorial service included a song by boy band Blue, with whom she had shared a voice coach and become friends. The BBC film was also broadcast after her death, as was footage of Alice on Top of the Pops 2.
The Martineau family and friends have already raised £1.25 million for the CF Trust and hope Peterson’s book, as well as CF Awareness Week, will help even more people understand this tragic condition.
Liz thinks Alice would have been thrilled but adds that she isn’t personally motivated by the idea of posthumous fame. She says, “I don’t need to be reminded to think of my daughter. I think of her every day.”
A Song for Tomorrow, by Alice Peterson is published on 9 February 2017 by Simon & Schuster.
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