Hilary’s Story. 26 when diagnosed
First published Indpendent on Sunday

If my life were a film, I know what would have been playing on the soundtrack one hot August afternoon. It was, as the voice-over would say (in a deep and gravelly tone), A day that would change my life forever: the day 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 (bedside manner: more Mr Hyde than Dr Jekyll) and ten 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 station waiting for the tube 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 it was mere narcissistic empathy: the girl in the poster had long, curly hair just like me. (It’s certainly proof that I’m a sucker for a good advertising campaign.) Or maybe - like the unconscious imposition of a false memory on a half-remembered photograph - it is 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 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 (and I’m an Arsenal supporter). Yes, I’ve got MS, but it’s unlikely 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 never regain normal (with contact lenses) vision.

Trying to describe the symptoms and sensations of MS is a real test of verbal dexterity and vocabulary i.e. 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 - Bigfoot, when it feels as if my lower body is encased in a plaster cast. Ironically, I spent the summer of 97 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. It’s the perfect solution to the Marxian dilemma (Groucho, that is) of not wanting to belong to a club that will have you as a member.

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