When Connie proposed setting up a charity in the immediate aftermath of her terminal diagnosis 7 years ago, I was reluctant to say the least. I harboured serious misgivings for many months. Mostly, I didn’t want to be unicycling around the place while my sister was sick, but I was also repelled by the prospect of marketing my sister’s illness.
As I told her at the time, it’s like Pandora’s box. If you choose to ‘go public’ then you can’t shut up shop when shit gets tricky. It’s not the way it works. Having lived a public life for many years to that point I had a fairly acute sense of what the rules were. All in or fold, basically.
One day, almost a year into me and Connie organising the long-distance unicycle ride that would form the bedrock of our new charity, I hurled all of my misgivings at Connie. It all felt private and I didn’t want to air our laundry. I was upset enough to be angry.
Connie killed my argument with two of the most perfectly weighted sentences I’ve ever had directed at me. She said…
‘Sam, this is bigger than us. Besides, we’ve said all that we have to say to each other.’
There wasn’t much I could say. I had to commit at that point. Connie was right.
I unicycled for a year and the rest is history.
Except now that fear from so many years ago has returned.
Let me be honest. I’ve marketed the absolute shit out of my sister’s illness. And now I’ve got to market the absolute shit out of her demise.
It was always going to come to this. I knew it then and now it’s here.
How do you monetise and market your own sister’s death?
You’ll see, I suppose.
It doesn’t make me uncomfortable. Not like the prospect of it used to. It’s bigger than me and Con, I accept that, even more than I did initially.
I wouldn’t have it any other way now. Nothing great can be achieved easily, and I consider a 10 million dollar take for research from her diagnosis to her death, to be a little bit great.
If it wasn’t bigger than me and Con, there wouldn’t be ten million bucks in the hands of our country’s brightest scientific minds. That‘s direct proof Connie was right.
So now I really get that it’s bigger than us. And now, we actually have said all that we have to say to each other.
And in her name, I will simply keep on shouting, from every rafter I find…
‘Our mums matter.’
It’s already been sung and it can’t be said enough. All you need is love. At the centre of love? Family. At the centre of family? Mums.
It’s down to that.
So the flag I wave, and will far beyond Connie’s grave.