That’s not me and mine in the photo! 

I guess who to tell, and how much info to disclose will vary greatly from person to person.  There’s a bit in ‘The Office’ section on telling the boss and work colleagues.  I decided early on that if it popped up in conversation with acquaintances and even strangers, I would be open and even answer any specific queries they had.   

Of course, immediate family members were informed the whole time during the diagnosis process. Once diagnosed, Annie was the first person to know.  Then I told the kids – not by sitting down for a ‘serious’ chat prefaced with something like, “We’ve got some bad news…”  It was more a casual chat, simply saying that I had MS and that it wasn’t at all life-threatening, just that I could have a few mobility issues from now on.  They didn’t know all the nitty gritty details at that time, but if they want to ask questions, I’m happy to answer honestly – and they both have read the booklet the Avonex company gives out as part of the ‘treatment’.

The only concern/shock I saw on Laura’s face was when she first saw me with a cane.  She got over that quickly because it was a ‘cool’ cane and a fashion statement as well as an aid.  She had a similar reaction when seeing the ‘cripple sticker’ on the dashboard of the car but quickly got over that as well.

Annie is the only person who knows everything I have experienced (both physically and mentally).  With hindsight, perhaps I shouldn’t have shared all the information.  One night she said, “I’d rather be diagnosed with terminal cancer, motor neurone disease or drop dead from a heart attack than know I had to live 35 to 40 years with MS”.  I realised then that I had been throwing a burden on Annie and talking a lot more about the negatives than the positives.  And I guess that was part of what led to creating this website.  I’m actually quite looking forward to 40 years living with MS – although I think Peter Siddle has more chance of getting to 96 (his best batting score is 43 to date).  And I have had friends succumb to cancer, motor neurone and heart attack.  I’m certainly not swapping!

It’s funny how people can react when you casually drop that you have been diagnosed with MS.  One friend went into shock and asked, “How long have they given you?”  And then he cheered me up by saying that he knew one person who lasted 10 years with MS.  He still doesn’t believe me when I say that I have the same use-by date I always had.  Another sent a ‘Get Well’ card – the thought was nice but both have little knowledge of the disease.

I’ll mention my mate, Dave, here.  Dave and I write songs together but only see each other a couple of times a year as he lives in South Australia.  Late last year we caught up for a couple of days in Brisbane to write some songs, enjoy some good food, a few laughs and far too much wine.  I know Dave will be fine if I ever need support from a friend because of this true story.

Dave has a mate (Chris) in Alice Springs.  Chris has pretty extreme cerebral palsy.  One evening Dave and Chris were having drinks in a bar when Dave noticed an unpleasant smell.

DAVE:  Geez, what’s that smell?

CHRIS: I just shit myself.

DAVE:  Well come on, mate, let’s get you out of here and cleaned up.

CHRIS: But I haven’t finished yet…

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