In the Spring of 2007, I sat on the deck of a sailing ship in the Caribbean and ordered a whisky sour.

A man I had just met sat with me, and ordered a second.

As we mixed our drinks with brightly coloured swizzle sticks, John Arthur turned to me with a glint in his eye and shared a family secret:

‘My parents invented Saint Swizzle’s Day. It can be declared at a moment’s notice. Because there really aren’t enough opportunities to enjoy a good cocktail’.

I remember that holiday as a glorious week of fun and freedom, shared with John, his life-partner Jim, and about two hundred others.

We booted around seas of deepest blue, and took island tours in places like St Lucia, where the local TV weather girl is affectionately named ‘Partly Cloudy’, in honour of her unwavering meteorological outlook.

Seven years later, and John is dead.

His life was robbed in his forties by a disease I then only vaguely understood, but one with which the whole world, through the intervention of ice-buckets, is now rather familiar.

ALS.

This morning, I watched a video of Clara, my beloved niece, sitting on a bench being drenched with ice water as she took the Bucket Challenge, and passed it on to three of her teenage friends. She was inspired, no doubt, by the forces of the valiant and the vacuous (known collectively as celebrity) who have jovially participated in drenching themselves, hollering in shock, and then nominating their celeb-mates in return.

We are four weeks into a video- challenge charity pyramid of whirlwind proportions – a charming mixture of courage, joy, connection, strut and creativity; and all of that before any money is handed over.

Hundreds of thousands have made personal videos like Clara, and have shared their challenge through social media (my favourite tells us more about the Irish mammy than it does about ALS).

Over $50 million dollars has been raised for ALS (Amyotrophic Lateral Sclerosis, or Lou Gehrig’s Disease, a thus far incurable neurodegenerative disorder).

A predictable, if misguided, backlash has emerged, talking of ‘slacktivism’ (purporting to do good whilst doing not much good at all), and bemoaning the state of things where a finite number of charity donations is unfairly ‘diverted’ to one single fad which feels more about entertainment than tackling a serious issue.

Such a response to the ALS Ice Bucket Challenge is ungenerous, and denies a truth of human motivation.

Yes, we do things because they are good, but also because they are fun, and give us the potential to connect with others. This is the same insight which sustains charity walks across Spain, hikes to Machu Pichu, and 5km fun runs in the local park.

In early 2013, as ALS dragged the life-force from his body (his mind remained clear as a whistle to the end), John and Jim sought to get married.

Because same-sex marriage was illegal in their home state of Ohio, they needed to fly to another to complete a dying wish. The private jet required to transport a now seriously ailing John was funded spontaneously, over social media, by their community of friends.

John and Jim’s marriage on the asphalt of a Maryland airfield was the subject of award-winning video journalism, recording a journey of such power and consequence that they became an internet cause célèbre in the fight for the right of same-sex Americans to marry.

There is an unpredictability to life which is part of its mystery and joy.

We are thrust, by our own choices and experiences, into a whirlwind of unanticipated consequences.

Who could predict that the love of two men, rent apart by ALS, might gently touch the world?

Who could imagine that a global outbreak of icy summer fun might prompt me to talk to my niece Clara – about a beautiful man with a swizzling glint in his eye, and the tragic disease which made him die?

 Brian McIntyre © 2014