Freezing the odds

Freezing the odds

If you haven't heard of the Ice Bucket Challenge by now, you are either a hermit living in a cave in Tibet or Sleeping Beauty, just waking up from a century of slumber in the highest room of the tallest tower of a magical castle.

The campaign went viral in the US in July, and when word reached Thailand that Justin Bieber had just doused himself with water (without ice, it seems — boo!) and challenged President Barack Obama, the campaign took off like a bung fai rocket in Yasothon. Within a matter of days, film stars and media moguls, socialites and bank CEOs were taking part, picking up the gauntlet thrown to them by friends and peers, and gleefully dousing themselves with a bucket of ice water like kids with water bazookas during Songkran.

There have been cynics, those who shake their heads and roll their eyes and say, "Tsk, tsk, what a waste of water! Why can't they just write a cheque?"

But the key to this huge marketing gimmick is the goal of the whole campaign — to create awareness of amyotrophic lateral sclerosis (ALS) — commonly known as Lou Gehrig's disease — a neurodegenerative disease that eventually leads to muscle atrophy, paralysis and death, leaving the mind unaffected. World-renowned physicist Stephen Hawking is perhaps the best-known person suffering from ALS.

Without him, ALS would have remained a vaguely known disease, a topic that might question like, "Is it like Aids?" — or an embarrassed blank stare followed by a change of topic to something safer like "What would you like for dinner?"

But even Hawking wasn't enough to create a media frenzy that would put ALS on the tip of everyone's tongue. No, it took the Ice Bucket Challenge to do that.

One person who helped to propel the challenge into the high profile publicity machine that it is was its co-founder, Corey Griffin, whose friend was diagnosed with the disease. Tragically, Griffin drowned in a diving tragedy on Aug 16 at the young age of 27.

I don't think he realised his efforts were going to have such a global impact. As it was, he left the world much too early. I'm sure companies would have been fighting to offer him a job in marketing. The first time I heard of ALS was only a decade or so ago, when a foreign diplomat was diagnosed. He bravely carried out his duties during his term, though one could see how the disease was gradually slowing him down and limiting his movements. 

It was also the first time I heard of US baseball player Lou Gehrig, who was diagnosed with ALS in 1939. The disease disappeared then off my radar. Until now.

People may scoff at this stunt, but I think it's the best thing anyone has done for the awareness of ALS since the French doctor, Jean-Martin Charcot, first published a paper describing the disease in 1874. Despite the advancement of medical technology, despite the fact that man has gone to the Moon and further, there is still no way to prevent or cure ALS. Stem cell technology is being researched to cure ALS, but we're not quite there yet.

Meanwhile, Hawking continues to be the best ambassador for ALS, having been diagnosed in his early 20s and given three to five years to live. He beat the odds, his brilliant mind uncovering secrets of the universe with his body confined to a wheelchair, speaking through a computerised voice simulator. 

It takes guts, determination as well as a fighting spirit to live with ALS. Hawking has gone on record to say there is not much he cannot do. In a 2011 interview with The New York Times, he said, "I have always tried to overcome the limitations of my condition and lead as full a life as possible. I have travelled the world, from the Antarctic to zero gravity. Perhaps one day I will go into space.

"My advice to other disabled people would be, concentrate on things your disability doesn't prevent you doing well, and don't regret the things it interferes with. Don't be disabled in spirit, as well as physically."

He is certainly inspirational to all of us able-bodied people, as well as the physically challenged. So get out those ice buckets and start dousing or donating to the cause of ALS. 

Usnisa Sukhsvasti is the features editor of the Bangkok Post.

Usnisa Sukhsvasti

Feature Editor

M.R. Usnisa Sukhsvasti is Bangkok Post’s features editor, a teacher at Chulalongkorn University and a social worker.

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