How I'm learning to live with MS

Like Jacqueline du Pre, Hilary Freeman somehow knew she would develop multiple sclerosis. Aged 25, the diagnosis was confirmed

If my life were a film, I know what would have been playing on the soundtrack one hot August afternoon in 1997. It was, as the voice-over would say (in a deep and gravelly tone), "A day that would change my life forever" - the day, aged 25, that I was told I had multiple sclerosis. In my celluloid parallel universe, as the neurologist gave me the damning diagnosis I'm certain I would have heard the soaring crescendo of Elgar's Cello Concerto, played, of course, by Jacqueline du Pre.

Actually, it wasn't like that at all. Finding out you've got an incurable illness is surprisingly banal, a huge anti-climax. There's no drum roll and no string section, just a few muttered words from an awkward-looking doctor and 10 minutes to ask questions before the next patient arrives. You don't collapse in a heap and devote the rest of your life to charity work. You just shed a few tears and fall back on the old, familiar comforts: a cigarette and a stiff drink. At least, that's what I did.

I like to think of myself as a rational person: some might even call me a cynic. But when I received the diagnosis, I had a strange sense of deja vu. It's as if I'd always known - perhaps organically - that I would develop MS.

I can vividly recall standing on the platform at Wembley Park Tube station waiting for the Tube to take me to school. It was 1987 (coincidentally the year Jacqueline du Pre died) and the MS Society had just launched its advertising campaign showing images of people with parts of their anatomies literally torn away. Opposite me was a poster of young woman with her eyes ripped out. I remember repeating to myself, "Please don't let that ever happen to me", like a superstitious child avoiding the cracks in the pavement. Somehow I just knew.

Perhaps my fear was foundedon mere narcissistic empathy: the girl in the poster had long, curly hair just like me. Or maybe - like the unconscious imposition of a false memory on a half-remembered photograph - it was just a trick of the mind, a self-protective mechanism which cushioned me from the blow of the frightening diagnosis. Whatever the explanation, I've since learned that my feeling is not uncommon. Indeed, the film Hilary and Jackie (released later this month) hints that Jacqueline du Pre had a similar premonition.

Her image certainly loomed large in my mind on D-Day (D for diagnosis). At the time, for me - as for so many others - she was the embodiment of MS, the only person I'd ever heard of who'd had the disease. She makes a great media icon: the modern-day tragic heroine, struck down in the prime of her life and cruelly robbed of her talent. So, when the neurologist said "I'm sorry, but our tests confirm you do have MS," my first thought was: "In a few years I'm going to be paralysed, blind, incontinent and unable to speak. Then I'll die. And I won't even be leaving my greatest hits on CD for people to remember me by."

I'm pleased to say that news of my demise has been greatly exaggerated. I'm still as healthy and (un)fit as ever. I'm mobile (I hope upwardly); I work full-time and I've been assured I should be here to celebrate my 70th birthday in 2041. In fact, I've got about as much in common with Jacqueline du Pre as I have with Nigel Kennedy. Yes, I've got MS, but it's unlikely that it will kill me. Contrary to popular opinion, most people don't die of MS: the difficult thing is learning to live with it.

Living with MS means living with prejudice from insurance companies (you're a high risk, even if you have no symptoms), from employers (many people with MS can't get jobs or are forced to retire early) and from the NHS, which refuses to make new treatments freely available to MS patients.

It also means living with ignorance. For a year, friends would greet me with the words "But you look so well !", as though they were disappointed that I hadn't arrived, muscles wasted, in a wheelchair.

Then there are the "reassuring" comments, from the misinformed: "MS - isn't that what Stephen Hawking's got?", to the clumsy "Why don't you talk to my mum's friend - she's got MS and she was fine for years. She's in a wheelchair now, but I'm sure you'll be OK".

But most of all, living with MS means learning to cope with uncertainty and fear, with the knowledge that today's tingling leg might become tomorrow's lower body paralysis, or that next time my eye goes blurry, I might not regain "normal" (with contact lenses) vision.

Trying to describe the symptoms and sensations of MS is a real test of verbal dexterity and vocabulary, ie frustrating. It's like being a child with a pain - you know it hurts but you can't explain how. The best I've come up with is to think of my MS as my own, internal theme park.

There's "The Tickler": sometimes, if I bend my head forward, I'll feel a tingling sensation from my bottom down to my feet. (This one usually happens when I go from the cold into a warm room.) There's the "Black Hole", when a fog will form over one of my eyes, and - the most disconcerting of all - "Bigfoot", when it feels as if my lower body is encased in a plaster cast.

Ironically, I spent the summer of 1997 looking like an extra from Spiceworld: The Movie. I found that platform trainers were the ideal footwear to absorb the impact of a hard pavement. I only hope that if I ever have another relapse, they'll be back in fashion.

MS is, by its nature, a condition which isolates. There may be 85,000 people in the UK with MS, but not one of them has the same disease. Nobody else has exactly the same symptoms as you, with the same severity, or in the same order. It's scant comfort, but when a neurologist hands you the diagnosis, they also give you free membership to an exclusive club: the MS community. Discovering this has made having MS a much less isolating experience.

Voices
Homeless Veterans charity auction: Cook with Angela Hartnett and Neil Borthwick at Merchants Tavern
charity appealTime is running out to secure your favourite lot as our auction closes at 2pm tomorrow
Arts and Entertainment
J Jefferson Farjeon at home in 1953
booksBooksellers say readers are turning away from modern thrillers and back to golden age of crime writing
Sport
Amir Khan is engaged in a broader battle than attempting to win a fight with Floyd Mayweather
boxing Exclusive: Amir Khan reveals plans to travel to Pakistan
News
Stacey Dooley was the only woman to be nominated in last month’s Grierson awards
mediaClare Balding and Davina McCall among those overlooked for Grierson awards
PROMOTED VIDEO
Have you tried new the Independent Digital Edition apps?
Life and Style
ebookNow available in paperback
Life and Style
ebooksA superb mix of recipes serving up the freshest of local produce in a delicious range of styles
Voices
Joseph Kynaston Reeves arguing with Russell Brand outside the RBS’s London offices on Friday
voicesDJ Taylor: The great tradition of St Paul and Zola reached its nadir with a worker's rant to Russell Brand
News
Twitchers see things differently, depending on their gender
scienceNew study shows that birdwatching men have a lot in common with their feathered friends...
News
i100
Arts and Entertainment
Caroline Flack became the tenth winner of Strictly Come Dancing
tvReview: 'Absolutely phenomenal' Xtra Factor presenter wins Strictly Come Dancing final
Life and Style
A still from the 1939 film version of Margaret Mitchell's 'Gone with the Wind'
life
News
Xander van der Burgt, at the Royal Botanic Gardens, Kew
scienceA Kew Gardens botanist has found 25 new large tree species - and he's sure there are more out there
Arts and Entertainment
British actor Idris Elba is also a DJ and rapper who played Ibiza last summer
film
Latest stories from i100
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

    Recruitment Genius: Finance Director

    £65000 - £80000 per annum: Recruitment Genius: Finance Director required to jo...

    Recruitment Genius: Medico-Legal Assistant

    £15000 - £25000 per annum: Recruitment Genius: This is a unique opportunity fo...

    Ashdown Group: (PHP / Python) - Global Media firm

    £50000 per annum + 26 days holiday,pension: Ashdown Group: A highly successful...

    The Jenrick Group: Quality Inspector

    £27000 per annum + pension + holidays: The Jenrick Group: A Quality Technician...

    Day In a Page

    The week Hollywood got scared and had to grow up a bit

    The week Hollywood got scared and had to grow up a bit

    Sony suffered a chorus of disapproval after it withdrew 'The Interview', but it's not too late for it to take a stand, says Joan Smith
    From Widow Twankey to Mother Goose, how do the men who play panto dames get themselves ready for the performance of a lifetime?

    Panto dames: before and after

    From Widow Twankey to Mother Goose, how do the men who play panto dames get themselves ready for the performance of a lifetime?
    Thirties murder mystery novel is surprise runaway Christmas hit

    Thirties murder mystery novel is surprise runaway Christmas hit

    Booksellers say readers are turning away from dark modern thrillers and back to the golden age of crime writing
    Anne-Marie Huby: 'Charities deserve the best,' says founder of JustGiving

    Anne-Marie Huby: 'Charities deserve the best'

    Ten million of us have used the JustGiving website to donate to good causes. Its co-founder says that being dynamic is as important as being kind
    The botanist who hunts for giant trees at Kew Gardens

    The man who hunts giants

    A Kew Gardens botanist has found 25 new large tree species - and he's sure there are more out there
    The 12 ways of Christmas: Spare a thought for those who will be working to keep others safe during the festive season

    The 12 ways of Christmas

    We speak to a dozen people who will be working to keep others safe, happy and healthy over the holidays
    Birdwatching men have a lot in common with their feathered friends, new study shows

    The male exhibits strange behaviour

    A new study shows that birdwatching men have a lot in common with their feathered friends...
    Diaries of Evelyn Waugh, Virginia Woolf and Noël Coward reveal how they coped with the December blues

    Famous diaries: Christmas week in history

    Noël Coward parties into the night, Alan Clark bemoans the cost of servants, Evelyn Waugh ponders his drinking…
    From noble to narky, the fall of the open letter

    From noble to narky, the fall of the open letter

    The great tradition of St Paul and Zola reached its nadir with a hungry worker's rant to Russell Brand, says DJ Taylor
    A Christmas ghost story by Alison Moore: A prodigal daughter has a breakthrough

    A Christmas ghost story by Alison Moore

    The story was published earlier this month in 'Poor Souls' Light: Seven Curious Tales'
    Marian Keyes: The author on her pre-approved Christmas, true love's parking implications and living in the moment

    Marian Keyes

    The author on her pre-approved Christmas, true love's parking implications and living in the moment
    Bill Granger recipes: Our chef creates an Italian-inspired fish feast for Christmas Eve

    Bill Granger's Christmas Eve fish feast

    Bill's Italian friends introduced him to the Roman Catholic custom of a lavish fish supper on Christmas Eve. Here, he gives the tradition his own spin…
    Liverpool vs Arsenal: Brendan Rodgers is fighting for his reputation

    Rodgers fights for his reputation

    Liverpool manager tries to stay on his feet despite waves of criticism
    Amir Khan: 'The Taliban can threaten me but I must speak out... innocent kids, killed over nothing. It’s sick in the mind'

    Amir Khan attacks the Taliban

    'They can threaten me but I must speak out... innocent kids, killed over nothing. It’s sick in the mind'
    Michael Calvin: Sepp Blatter is my man of the year in sport. Bring on 2015, quick

    Michael Calvin's Last Word

    Sepp Blatter is my man of the year in sport. Bring on 2015, quick