`MS has made me a better person, more caring in every way'

Diagnosed at 22, dumped by her boyfriend soon after - but Carole Mackie's still smiling. HILARY FREEMAN, a fellow sufferer, met her

Carole Mackie stepped off the plane into the dazzling sunshine of Rio de Janeiro. At 22, the British Airways air stewardess was looking forward to 10 days of sunbathing and partying with the rest of the crew. But 48 hours later, she found herself in the city's central hospital, wheelchair-bound and unable to feel anything from the shoulders down. She didn't know it at the time, but this was to be her last long-haul flight. Her sudden paralysis marked the start of a painful, ongoing battle with the incurable condition, multiple sclerosis.

Eight years later, Carole's life no longer consists of exotic stopovers and dispensing duty-free. She's still employed by BA, but she hasn't flown for six months. Now seconded to the company's PR division, she's been given a year's sabbatical to write and publicise her autobiography, Me And My Shadow - Learning To Live With Multiple Sclerosis. It is published next week, to coincide with MS Awareness Week.

I, too, have MS and I had an opportunity to meet Carole two years ago, when I was first diagnosed. The prospect then appalled me. I was too shocked and angry, too preoccupied with my own misfortune. Now, sitting with Carole at her home in South London, I realise talking to her might have helped.

I tell her I feel foolish for this. She laughs and makes me feel better. "When I was first diagnosed, I went through the anger, self-pity and frustration stage, too. I felt like a big chunk of my youth had been taken away - I was angry for four years! But that's one reason I wrote the book, to show people how I got through it. I want to give people someone they can relate to, to let them know that life does go on."

Life may go on, but the Carole Mackie who got off the plane at Rio Airport, almost a decade ago, no longer exists. When she was first diagnosed she didn't know what MS was - now she's an international spokeswoman for people with the condition and regularly speaks at conferences. She has been the subject of a television documentary and has raised thousands of pounds for the MS Society by organising celebrity fundraising parties.

Multiple sclerosis is a disease of the nervous system. It affects approximately 85,000 people in the UK. The name means "many scars" and it occurs when the myelin sheaths protecting the brain and spinal cord are damaged - that much is known but no one has yet discovered a cause, or a cure, for the condition. Neither contagious nor hereditary, MS is commonly diagnosed between the ages of 20 and 40 and can cause paralysis, incontinence, blindness, speech and memory problems and - in a small proportion of cases - death. No two patients have exactly the same pattern of symptoms or the same prognosis.

Like me, Carole has the relapsing-remitting form of the disease: periods of good health interrupted, without warning, by symptoms of varying severity. Following a car accident last year, she suffered a relapse and has been plagued by constant fatigue, problems with her vision and burning in her hands and legs. Today, she complains of exhaustion and a burning sensation down her back. "Have you ever had that?" she asks. I nod. "It's so good to speak to someone else with the condition," she says. "The symptoms are almost impossible to describe - it can be very frustrating." I ask her what is the worst part for her. "The unpredictability," she says. "Never knowing what might happen tomorrow. I might be fine, but I might be in a wheelchair."

Co-written with a journalist, Sue Brattle, Me And My Shadow is the story of how MS transformed Carole's life. It tells how the diagnosis of a serious illness affects not only the patient, but also their friends, family and employer, and includes chapters written by her mother, father, manager and the ex-boyfriend who left her. By and large they are brutally honest; her father admits, "I wouldn't take on someone with MS, not even if she was Miss World."

"Telling my parents and boyfriend I had MS was hardest thing I had to do," says Carole. "After months of horrible tests and unexplained symptoms, the diagnosis almost came as a relief. At least I knew what was wrong with me, that I wasn't a hypochondriac. But I wanted to protect the people I loved: I didn't know if they'd be able to handle it."

The family was dispersed, which made telling them even harder. After divorcing, her father had moved to Devon and her mother had emigrated to Australia. Both had new partners. Her sister was a nanny in Switzerland and her boyfriend, Craig, a professional golfer, was working in Finland. She told her family by phone; then, with the support of BA, booked a flight to Finland to tell Craig.

On the surface he seemed caring and supportive, promising he wouldn't leave her, but he refused to read the information leaflets she'd brought him. "I don't want to read about what might never happen to you," he said. "I want us to deal with things when they happen."

In retrospect this was the first sign of trouble ahead. As the weeks went by, Carole says she felt increasingly alone. "I was no longer the person Craig had fallen in love with. I had always been the caring one, looking after him and cooking his dinner. Now I needed help and he wasn't giving it to me. A pattern was beginning to take shape; not crying, not admitting my fears, not talking to people honestly and properly. It was easier to say things were OK when they weren't. Of course, it didn't do me any good."

She returned to work. BA, who she says has been very understanding, accepted her desire to continue flying, moved her to short-haul flights and reduced her working day. In return, she had to promise always to be honest about her symptoms and not fly when she wasn't fit.

She'd just got back into the routine of work when her grandfather died, which was a major blow, and the stress of this compounded the heartache of her increasingly distant relationship with Craig. She suffered relapse after relapse.

Then Craig moved out and she discovered he had started seeing someone else. A couple of years after diagnosis, she hit rock bottom. "I thought I'm single, I've got MS - what man is ever going to look at me again? How would I find the right time to tell them I've got MS? What do I say to them?"

Craig maintains he didn't leave Carole because of her illness. "When you're living with somebody every day you don't realise a gap is growing between you or that the other person is changing," he writes in his chapter. "It's gradual. When I met Carole she was happy-go-lucky and loved her job. She changed over a period of time, but not only because of her illness. She'd had several family and friends' deaths to deal with and being off work made her go into debt. These things are bound to change someone and their attitude towards life. (They) could have contributed to me meeting someone else and ending the relationship."

Craig could be perceived as the villain of the piece, but Carole bears him no ill will. "I don't want revenge. I don't want people to think he's a bastard," she says. "I admire his courage and honesty in agreeing to contribute to the book. I didn't see him for four years, but we are now friends. I don't know if I'd still be with him if I hadn't got MS. He wouldn't be right for me now. He's not a communicator like I am. Talking openly is the most important thing for me."

The break-up of her relationship marked a turning-point. Carole began to accept her MS and to talk openly about it, even with her colleagues at work. Having "come out" publicly, she set about organising her first fundraising party, which led to media interest and involvement with the MS Society.

"I've had to be strong, but I've also been very lucky," she says. "I have so many good friends and such a wonderful employer. MS has changed me. It's made me a better person, more caring. It's taught me not to take people for granted. I think that when I was diagnosed I expected everyone to know how I was feeling automatically. Now I realise I have to be patient: if I want people to understand MS, I have to educate them."

I wonder if her incredibly positive attitude is a cover, that she is in denial about her illness. "I fully accept what might happen to me," she insists. "MS is a shadow I live with every day - hence the title of the book. I've met lots of people who are severely disabled with MS and I fully accept I could deteriorate. But I also know I might not. MS is unpredictable, so I've got to live for today. I know my limits, but I plan my life like anyone else: if something happens, I'll deal with it."

`Me And My Shadow - Learning To Live With Multiple Sclerosis', by Carole Mackie and Sue Brattle, Aurum Press, pounds 14.99. For tickets to the launch at the Cafe de Paris in London, 19 April, call 0171 610 7199.

Arts and Entertainment
Characters in the new series are based on real people, say its creators, unlike Arya and Clegane the Dog in ‘Game of Thrones’
tv'The Last Kingdom' embraces politics, religion, warfare, courage, love and loyalty, say creators
Sport
Sergio Romero saves Wesley Sneijder's penalty
world cup 2014But after defeating the Dutch, Lionel Messi and Argentina will walk out at the Maracana on Sunday as underdogs against Germany
Sport
Scoreboard at the end of the semi-final World Cup match between Brazil and Germany at The Mineirao Stadium in Belo Horizonte
Sport
'Saddest man in Brazil' takes defeat with good grace, handing replica trophy to German fans
PROMOTED VIDEO
Have you tried new the Independent Digital Edition apps?
Life and Style
ebookA wonderful selection of salads, starters and mains featuring venison, grouse and other game
News
peopleThe Game of Thrones author said speculation about his health and death was 'offensive'
Arts and Entertainment
Martin Freeman and Lauren O'Neil in Jamie Lloyd's Richard III
theatreReview: The monarch's malign magnetism and diabolic effrontery aren’t felt
News
Glamour magazine hosts a yoga class with Yogalosophy author Mandy Ingber on June 10, 2013 in New York City.
newsFather Padraig O'Baoill said the exercise was 'unsavoury' in a weekly parish newsletter
Extras
indybest
News
people'She is unstoppable', says Jean Paul Gaultier at Paris show
Sport
Alexis Sanchez and apparently his barber Carlos Moles in Barcelona today
football
Arts and Entertainment
Miley Cyrus has her magic LSD brain stolen in this crazy video produced with The Flaming Lips
video
Arts and Entertainment
In his own words: Oscar Wilde in 1882
theatreNew play by the Oscar Wilde's grandson reveals what the Irish wit said at his trials - and what they reveal about the man
News
people
Arts and Entertainment
Unless films such as Guardians of the Galaxy, pictured, can buck the trend, this summer could be the first in 13 years that not a single Hollywood blockbuster takes $300m
filmWith US films earning record-breaking amounts at the Chinese box office, Hollywood is more than happy to take its lead from its new-found Asian audience
News
The garage was up for sale in Canning Place Mews for £500,000
newsGarage for sale for £500,000
Life and Style
tech
Independent
Travel Shop
the manor
Up to 70% off luxury travel
on city breaks Find out more
santorini
Up to 70% off luxury travel
on chic beach resorts Find out more
sardina foodie
Up to 70% off luxury travel
on country retreats Find out more
Have you tried new the Independent Digital Edition apps?
Independent Dating
and  

By clicking 'Search' you
are agreeing to our
Terms of Use.

ES Rentals

    iJobs Job Widget
    iJobs General

    Mobile App/IOS Developer (C#, ASP.NET, .NET, MVC)

    £50000 - £60000 per annum + Benefits + Bonus: Harrington Starr: Mobile App/IOS...

    Front End Developer-JavaScript, Angular J.S, HTML, CSS, ASP.NET

    £40000 - £45000 per annum + Benefits + Bonus: Harrington Starr: Front End Deve...

    Associate CXL Consultant

    £40000 - £60000 per annum + BONUS + BENEFITS: Harrington Starr: CXL, Triple Po...

    Associate CXL Consultant

    £40000 - £60000 per annum + BONUS + BENEFITS: Harrington Starr: CXL, Triple Po...

    Day In a Page

    The true Gaza back-story that the Israelis aren’t telling this week

    The true Gaza back-story that the Israelis aren’t telling this week

    A future Palestine state will have no borders and be an enclave within Israel, surrounded on all sides by Israeli-held territory, says Robert Fisk
    A History of the First World War in 100 Moments: The German people demand an end to the fighting

    A History of the First World War in 100 Moments

    The German people demand an end to the fighting
    New play by Oscar Wilde's grandson reveals what the Irish wit said at his trials

    New play reveals what Oscar Wilde said at trials

    For a century, what Wilde actually said at his trials was a mystery. But the recent discovery of shorthand notes changed that. Now his grandson Merlin Holland has turned them into a play
    Can scientists save the world's sea life from

    Can scientists save our sea life?

    By the end of the century, the only living things left in our oceans could be plankton and jellyfish. Alex Renton meets the scientists who are trying to turn the tide
    Richard III, Trafalgar Studios, review: Martin Freeman gives highly intelligent performance

    Richard III review

    Martin Freeman’s psychotic monarch is big on mockery but wanting in malice
    Hollywood targets Asian audiences as US films enjoy record-breaking run at Chinese box office

    Hollywood targets Asian audiences

    The world's second biggest movie market is fast becoming the Hollywood studios' most crucial
    Grindr founder Joel Simkhai: 'I've found love on my dating app - and my mum keeps trying to hook me up!'

    Grindr founder Joel Simkhai: 'I've found love on my dating app'

    Five years on from its launch and Grindr is the world's most popular dating app for gay men. Its founder Joel Simkhai answers his critics, describes his isolation as a child
    Autocorrect has its uses but it can go rogue with embarrassing results - so is it time to ditch it?

    Is it time to ditch autocorrect?

    Matthew J X Malady persuaded friends to message manually instead, but failed to factor in fat fingers and drunk texting
    10 best girls' summer dresses

    Frock chick: 10 best girls' summer dresses

    Get them ready for the holidays with these cool and pretty options 
    Westminster’s dark secret: Adultery, homosexuality, sadomasochism and abuse of children were all seemingly lumped together

    Westminster’s dark secret

    Adultery, homosexuality, sadomasochism and abuse of children were all seemingly lumped together
    A History of the First World War in 100 Moments: Dulce et decorum est - a life cut short for a poet whose work achieved immortality

    A History of the First World War in 100 Moments

    Dulce et decorum est: a life cut short for a poet whose work achieved immortality
    Google tells popular music website to censor album cover art in 'sexually explicit content' ban

    Naked censorship?

    The strange case of Google, the music website and the nudity take-down requests
    Howzat! 8 best cricket bats

    Howzat! 8 best cricket bats

    As England take on India at Trent Bridge, here is our pick of the high-performing bats to help you up your run-count this summer 
    Brazil vs Germany World Cup 2014 comment: David Luiz falls from leader figure to symbol of national humiliation

    David Luiz falls from leader figure to symbol of national humiliation

    Captain appears to give up as shocking 7-1 World Cup semi-final defeat threatens ramifications in Brazil