`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
Sunday 11 April 1999
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.
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