More MS news articles for February 2001

Charlie Courtauld: Now everyone knows, apart from those who matter most

4 February 2001

Perhaps the most difficult decision of the past few weeks even greater than choosing a name for the baby (Rory, by the way) has been deciding whom to tell about my diagnosis, and how.

Early conversations were clumsy. It's not an easy thing to slip into a chat. So the first attempts were hamfisted:

"Charlie. Long time no see. How are you?"

"Fine. Except I've got MS."

"Oh my god!"

End of chatty conversation.

More subtle methods were called for. They were no good, either:

"Charlie. Happy New Year. How goes?"

"Fine. The baby's due any day now. Lucy's looking huge. And, oh yes, I've got Multiple Sclerosis."


"Yes, anyway, how are you?"

"Oh my god!"

End of chatty conversation.

You see, it's a problem. Either I blurt it out (conversational death) or I try to be casual and it just comes out weird.

There is an alternative. Not to blab about it. Keep it a secret. But the trouble with that is that it's all I can think about at the moment so my concentration wanders easily, and I end up not listening to what is being said:

"Hi Charlie. Everything OK?" [Thinks: What does that mean? Does she know?]

"Fine thanks. A good New Year?" [Should I tell her? Is she only being nice because she knows? Does she look like an Independent on Sunday reader? Is that a sympathetic smile, or a smirk? Will I be a cripple soon? Can I get one of those orange parking dispensations? When's the election going to be? When will the builders be out? Is Lucy going to have the baby today? Who is this person?]

"I'm sorry. What?"

All of these techniques have the same basic flaw. They all force everyone into making a BIG DEAL out of this. Inevitably, with the diagnosis so recent, that can't be wholly avoided, but I was keen to find a way of keeping me and Lucy away from other people's reactions. So, we came up with another option: tell everyone but not personally. Partly it was done via this column: that dealt with over 200,000 people at a stroke. But, alarmingly, not everyone appears to read these pages: believe it or not, readers, there are still one or two weirdos out there who don't subscribe to The Independent on Sunday. Even for those who do, I can't be sure that they've read what I've written about MS.

"Charlie. Loved your piece in the Sindie." [Which one? The one about the SNP or the one about MS? How can I tell? If you loved that one, you must be a mean bastard. But if you loved the other one, you must be a bit of a political nerd.]

So the second part of the cunning plan was to encourage people to tell each other. Like a chain letter, the news would spread and I would no longer have to worry about which people know and which don't know. Brilliant. Now we can all get back to our lives.

But now a new problem arises. Almost everyone knows except some of those who matter the most: my children.

Daisy is four. Martha is two. As I write, Rory is eight hours old, following a fairly gruesome but ultimately worthwhile four-hour labour endured by Lucy. (In fact, this was one of the rare occasions when having MS proved an asset. After a tip-off from Lucy, the midwife was almost nice to the husband something of a first on a labour ward.)

All three children are I hope now asleep: the girls upstairs and Rory having his first night in Colchester General. For the moment, Lucy and I are their role models. We are impregnable superheroes, able to move mountains (or at least to demonstrate how to get Pingu to leap across treacherous ice floes in the new CD Rom.)

So, when should we smash that youthful hero-worship by revealing that Daddy is a mere mortal, prone at any time to falling over even without added alcohol? The question is more pertinent than it sounds. The other day I allowed Daisy to ride on the back of my bike as I cycled up the lane to pick up the papers. In the process, my vision went haywire and I nearly crashed the bike several times. But to refuse Daisy that fairly innocent pleasure would force me to make a decision without giving Daisy a good reason something which all dutiful readers of parenting guides are ordered to avoid.

Of course, this sort of situation can be fudged: next time I won't tell Daisy that I'm off to get the papers at all. But at some point the announcement will have to be made. Do I do it at a time of my choosing or when it becomes unavoidable? And do I break it to them all at once, despite the four-and-a-half-year age gap, or do I stagger it forcing Daisy to keep a secret from her younger siblings?

For the moment, these decisions are in the future. Let's hope they stay that way long enough at least for Rory to master the mysteries of leg-spin bowling.