Content from: Alice Martineau's Article in the Marie Claire magazine, December 2002
written 4 months after the telegraph article, estimated October or earlier
When Alice Martineau, 28, was born with cystic fibrosis she was given ten years to live. Today, she is waiting for a life-saving transplant. Here she tells Louise Millar how coming to terms with her illness has helped her achieve her dreams.
'There was never a time that I didn't know I had cystic fibrosis (CF); I just grew up with it. It's a genetic condition that changes the body's chemistry - mucus obstructs the airways in your lungs and secretions clog the pancreas. My lungs weren't really affected until I was older but, as a child, I had three-quarters of my gut taken out.
I always knew I was different. At primary school, I had to eat special low-fat food, so the kitchen would heat up my mum's casserole while everyone else had disgusting school food. But children are very accepting and everyone helped me. I'll never forget one girl who chose me second for her team in PE. She knew I'd probably make the team lose because I didn't have much energy to run the race, but she picked me anyway.
Secondary school was different. From the start, I was bullied. I was starting to get breathless and go to hospital more, and the other kids didn't like the special treatment I got. They'd call me "teacher's pet" because I came in late, and they copied my walk - I have co-ordination problems because of a vitamin deficiency to do with my malabsorption, and they would make fun of that. I was desperate to leave.
My mum persuaded me to stay and move to a different form. It was friendlier and I made a couple of best mates. From then on, I became obsessed with my image - I didn't ever want to be seen as ill again. Up until that point, I'd accepted most things, but from then I started hiding my illness.
At school, for example, I wanted to be like the other girls - to wear trendy clothes, go clubbing and be popular. I loved dancing, and I became a real show-off. I still worried that people might think CF was infectious, so one night at a party, I decided to snog a bloke, then his mate, then another mate. I thought it would make everyone realise that kissing me was alright.
I got my first boyfriend when I was sixteen. I remember thinking, "this isn't so bad. I get special treatment and yet I'm still going clubbing and I've got boyfriends. I'm fine."
As part of my denial, I started choosing things that were the opposite of being ill - singing, dancing, clubbing. In my gap year, CF meant that I couldn't go travelling like my mates, so I wrote to record companies, and it led to me doing backing vocals in a studio, which I loved. I also did modelling - it seemed so glamorous.
That was when the pretence really started - and it was awful. I thought the agency wouldn't take me on if I told them I had CF, so I started conning everyone. I'd get to castings early and leave late so no one would notice I was breathless. Because of my co-ordination problem, I find walking without shoes difficult, but on one job, I had to walk onto the set barefoot. I was wobbling and the photographer kept asking if I was OK. I was so embarrassed, I left crying.
At the end of my gap year, my friends were going to university. I saw them have all this freedom, and I wanted it too, so I went to Warwick to do English. Going to college is nerve-racking for anyone, but for me it was a really big move - especially as I was still hiding my CF.
I was used to doing things like percussing [tapping] my chest every day to bring up the mucus myself but, for the first time, I didn't have my parents to fall back on. I didn't want my condition to hold me back, though. I was relatively healthy and could still party till 2am. So I told very few people, and became a real social animal.
I lasted two weeks. The pressure of freshers' week was just too much. I got a lung infection and I had to go into hospital for four months; some of my lung was taken out. I was coughing up blood, then I got a really bad infection and my lungs were damaged. For the first time, the doctor said I needed to think about having a heart, lung and liver transplant in the future.
'For the first time, I couldn't put CF to the back of my mind. I was nineteen and had to face reality. When I was born, my parents were told I had a ten-year life expectancy. They didn't tell me, but I had seen a couple of girls die of CF on the ward I was on, which was awful. I'd always think, "That won't be me - I'm different." But when I came out of hospital, I couldn't ignore the decline in my health. Before, I had been able to walk 500 yards; now, it was a real effort to walk up the street.
After so much time in hospital, I couldn't bear to have a normal, boring nine-to-five job. I wanted to keep doing things that were complete escapism. I finished my degree at King's College in London, then, when I was 23, I tried a bit of journalism, more modelling and some TV work.
What I still really wanted to do, though, was sing. It sounds like a cliché, but Madonna was a real influence on me: I thought she was fantastic - the way she came from nothing, struggled and struggled, and got there in the end. I knew I had an inner drive and I was determined to perform, so I started to write to record companies again. One guy liked a song I wrote and that spurred me on. I took lessons and found, to my surprise, that I had a really powerful voice.
But when I got a manager, the pretence started again. I hated lying, but I thought if I told him how serious CF is, he wouldn't take me on. So if we arranged a meeting, I'd get there ten minutes early so that he wouldn't see me catching my breath - or I'd pretend I was taking a call on my mobile outside the building, so he wouldn't walk me to my car and see my disabled sticker.
As with modelling, I struggled massively with music, but I didn't want to give up. My condition made me realise that you only have one life. I get frustrated with people who sit around doing nothing. If you've got energy, why not use it? On the days I'm not feeling very well, I'm out there meeting people.
My family and friends were a huge support. And, three years ago, I met Al. The first time we talked, he made me laugh. When you've got something very serious in your life, that's so important. It can be hard with men. I've had a few boyfriends who have been really horrible. One said: "if you ever cough up blood when we're having sex, I'll never speak to you again." I didn't sleep with him again after that.
Another bloke stopped returning my calls when he saw all the medical machines at my house. I coped by thinking, "well, he's not the right person." I need someone strong enough to be with me - and if they're not they're not. Al was supportive and loving from the start, and he encouraged me to pursue my music.
Then, when I was 26, my illness took a turn for the worse. The doctor told me my lung function was declining. He said: "I think you've definitely got two more years to live, but if you were to ask me whether you had five more, I couldn't answer. You should start considering transplantation again." The words circled round my head as I walked out into the rain: "dead in five years", "transplant". I found myself staring at people in the street with resentment, thinking, "God, you're lucky," but I knew they had their own problems.
I went on the transplant waiting list when I was 27, and was given a pager. At first, I imagined it would go off every day. Now, eighteen months later, I think about it in the morning and push it to the back of my head. There are 6,000 people waiting for transplants in this country, and only 2,000 get them. Only five people in Britain have had my operation.
This year, it became impossible to hide my CF any more. I started using an oxygen tank six months ago to help me breathe. I now also need physio three times a day and take antibiotics or ventolin, which helps open up my lungs, through a nebulizer [a device that administers drugs in a mist form] for 45 minutes, three times a day.
The more difficult it became to hide my condition, the more difficult it was to deal with other people's reactions; if I was in a wheelchair, they would give me pitying smiles. It was so refreshing when someone treated me normally, but I know I'd probably be the same. I think people are scared of the illness and don't know how to approach me.
I wanted to do something, so a few months ago, I decided to write an article to raise awareness about cystic fibrosis and transplantation. I told my story and explained why more donors are needed. I nearly didn't mention my music, as I'd always wanted to keep the two things separate, but people told me I should, as it was such a big part of my life. The response was huge.
For years, I'd been hiding my CF because I thought it would affect my career. Ironically, it did the opposite. My manager sent my article and demos to Radio 2, and things took off. GMTV interviewed me, I appeared on channel 4, then my manager sent the whole package into Sony.
The day he rang up, I couldn't believe it. He said: "I think we've just been offered a deal." My uncle's a record producer, but he couldn't believe it either. It still hasn't sunk in for any of us.
The deal has meant a lot to me for different reasons. At one gig, I saw someone crying in the audience. To touch someone with something you've created is the most amazing thing.
'Part of it is also about me finally accepting that I'm ill. CF is part of me and who I am - there's no point pretending it doesn't exist. My music is from personal experience; it's all about stuff I've been through. It's not that I want people to hear it and say, "Oh isn't she brave?" I want to change people's attitudes. I want people to think, "If someone ill can do it, perhaps I can." I also want them to go out and get donor cards. If a tragedy happens in your family, why waste good organs when you could save someone else's life?
I still have to be within two hours of the hospital in case my pager goes off, so touring isn't an option. But I am able to do TV. I'm not up to performing a whole set, but maybe I'll be able to do one song with my oxygen. I just hope that people accept that's who I am when they see me on stage.
That's when I'm happiest - on stage. If I am depressed that day, I'll put it to one side because I know I've got to perform. When I'm playing my music, I forget about everything. It all becomes about the moment.'
Alice Martineau's album Daydreams is released through epic on 11 November.