7 January 2001
A name is, they say, just a name. I had some symptoms before the medical diagnosis gave a name to them, I have some now. Nothing – on the face of it – is any different.
But of course, it doesn't feel like that. A name on a diagnosis changes everything. For a start, it validates the symptoms – and not only those I've got, but those I have had in the past. Like the time I lost my sense of taste for a month. Or the "RSI" I had in my arm.
Suddenly it all seems to make sense. So – in a way – I welcome the diagnosis. My wife, Lucy, on the other hand, hates it. Right from the start, this thing has come between us: I've got it, she hasn't – and there's nothing that either of us can do about that.
Perhaps the biggest change now that it has been given a nameis that I can look it up. Like this:
Multiple sclerosis noun Pathol. a chronic degenerative, often episodic disease of the central nervous system marked by patchy destruction of the myelin that surrounds and insulates nerve fibres, usually appearing in young adulthood and manifested by one or more mild to severe neural and muscular impairments, as spastic weakness in one or more limbs, local sensory losses, bladder dysfunction, or visual disturbances.
The weeks following the diagnosis have been filled with definitions like this. My voracious appetite for information on the disease has been sated by books, dictionaries and – courtesy of an ISDN line and (most importantly) an obliging-despite-being-heavily-pregnant Lucy – the internet. At the click of a mouse, I've learnt everything I wanted to – and rather more.
On the day of the diagnosis I took my first trip to the library. Closed. Next, the bookshop.
"Have you got a health section?"
The health section was huge, groaning with fat hardbacks. I was impressed – until I started perusing them. In the old days, the definition of "health" was fairly straightforward. It was about being unwell. Then the Californians got in on the act. Now, don't get me wrong. I've got nothing against books with titles like "All Men Are Bastards And All Women Are Fantastic" or "HRT – a Gift from Heaven" and so on. But they do rather seem to have taken over the shelves, to the exclusion of the real health books.
In fact, once I'd ploughed past these, and made it through the zillions of books on birth and babycare (most of which we've got at home already) there was only one relevant tome. The title, "Surviving MS", was depressing enough. The decision to use black as the cover's colour was – I felt – off-putting. But the relentlessly upbeat tone, coupled with amusing cartoons about wheelchairs and incontinence took the biscuit.
I bought the book anyway. It was all I could get. Lucy and I spent the next few days surreptitiously reading a few pages and then hiding the book from each other.
But after a couple of days Lucy had put out a plea and other, less gruesome books arrived. The black book went in the bin.
These new books were better, but confusing. Some said I should immediately pack in the fags. Another – the one I preferred – said I shouldn't. Some said I must eat only nuts and take masses of vitamins. My preferred tome said "crackpot rubbish". In fact, the more I read of this book, the more I liked it. Until, that is, the last page.
It wasn't the author's fault. He wrote the book in 1987. It must have seemed like a good idea at the time to print a list of role models for MS patients to look up to, aspire towards. But one name brought me to earth with a bump. It hadn't even occurred to me, and ever since I read it, I can't seem to get away from Jacqueline du Pré.
First there was the Christmas shopping to do, and where better to get something for Lucy's stocking than the record shop? But they had a classical promotion on, and, wouldn't you know it, it was Elgar that they were prominently displaying. Not just any Elgar, mind, but the Cello Concerto played by THAT WOMAN. I rushed home, empty-handed and fed up. But at least there was the Christmas viewing to plan. What films are on offer? Not Titanic again! Let's look at Channel 4's blockbuster offering:
9.00 Hilary and Jackie.
Now, ever since our time at Bristol University, I've tried to keep up with Emily Watson's glittering career. She's the great success story of our year. So I was torn. Rubbish on every other side, Emily on 4 – but playing THAT WOMAN.
The television stayed switched off on Christmas night. But names have still dominated the Christmas period. Baby names. This is our third, and it doesn't get any easier. With our two favourite girl's names gone (Daisy and Martha), it is in fact harder. My ritual choices for boy's names are, as usual, vetoed by Lucy (although I still can't fathom her objections to Merlin or Pirate).
With this one, for the first time, we're falling back on one of those baby name books, which I stumbled across while looking for stuff about MS. But the book just makes it harder. How can 6,000 names all be ghastly? But believe me, they are.
'I know what you've got. It begins with H and ends with A.'
24 December 2000
It was an understandable assessment from my friend. Hypochondria has long been virulent in my family, not least in me. Every headache, every twinge has been the precursor of something horrible – and then turned out to be nothing. My notes at the doctor's spill from three of those brown envelopes. So what was I so fussed about?
Have you ever been swimming with trousers on? I once had to as part of a life-saving course at school. It's no fun – trousers are nigh impossible to swim in, and when you get out of the pool, having rescued your drowning brick/plastic dummy/ fellow pupil, they're pretty hard to walk in too. So it was rather a surprise to wake up one morning in September to discover that I was wearing soaking trousers. It was an even greater surprise – bleary-eyed as I was at that time of the morning – to learn that I wasn't.
You see, I could feel the dripping garments with all their tightness and heaviness weighing me down, but I just couldn't see them. I hopped out of bed. As usual, just a T-shirt on. When I padded around, I could hardly feel my feet. Aled Jones may enjoy walking in the air, but I didn't.
Perhaps a doctor could help – but since we were on holiday in Spain, I wasn't going to rush to a clinic there and then. My Spanish isn't good enough: I can just about manage "nail", but "pins and needles" is well beyond me. Best to wait for a week until we got home – the trousers would surely have gone by then. Anyway, the sensation wasn't entirely unwelcome: one of the results was that I could now sleep with my feet touching each other, something I've always hated. I invariably keep Lucy awake as I thrash around in bed, trying to get comfortable. Now, none of that. It was into bed and straight to sleep. So, let it go, I thought. It'll pass before we get home.
It didn't, of course. It got worse. Now I had a big purple bruise on my foot where I'd stepped on one of my daughters' plastic fishing rods. But I couldn't even feel that.
So, the doctor's surgery. With autumn approaching, the waiting room was heaving with coughers and snifflers. Being new to the area, I hadn't met my GP before. After a series of pricks and brushes, straight-line walking and reflex tests, he tut-tutted and referred me on to a neurologist, Giles, in Colchester. Despite sporting that compulsory doctor's neckwear, the bow tie (which one might have hoped had gone out of fashion after Harold Shipman), Giles was a friendly bloke – but seemed to agree with my friend's diagnosis. "Go away for a month. A viral inflammation of the brain. It'll probably disappear. Come back in four weeks if it hasn't."
So I went away, rather shamefaced, and waited for the symptoms to pass. And, hey presto, they did. But new ones came instead. The wet trousers were off, but now I kept bumping into things. Walls, bollards, cars, lift doors. If there was something to hit, I seemed unerringly to go for it. Then there was the sleeping thing. Now I wasn't only dropping off at night, but at rather embarrassing times of the day, too – like The Independent on Sunday editorial conference. And I felt drunk. Not nice drunk, but headspin drunk.
Back to Giles. He decided to send me to Ipswich for an MRI scan. These are no fun. First you have to put on a mask, like an ice-hockey goalie. Then you lie still for 40 minutes while what sounds like that ice hockey match goes on around you. "Bang, plunk, plunk." "Just one more," says the radiologist. "Plunk, bang, bang." "That's it, now make an appointment with your neurologist for next week to hear the results."
"Can't you tell me?"
"No, I don't understand these things, I just work the machine."
As if. Still, I suppose that's what they have to say for fear of putting a foot in it.
Back to Giles again the next week. He hasn't called, so it must be clear – mustn't it?
"You've got something. As I'd thought. Look at these blobs on your MRI."
"What are they?"
"We call them blobs."
"There seem to be a lot of them."
"Yes. Not good news, I'm afraid."
"So what is it?"
"I'm not going to tell you right now. I want you to tell me."
And so it began.
An hour of cat and mouse. Not cancer, not CJD. By the end, of course, I
guessed – if only by elimination. Doubtless Giles was right to make me
say the words first. Perhaps that lessens the shock. Anyway, by this time,
like me you'll probably have sussed what I've got. It begins with M and
ends with S.
Charlie Courtauld will be writing a regular column.