ALS Ice Bucket Challenge, A Watered Down View

I first came to know about it through one of my school mates, now based in US, with whom the only interaction I had in past three decades was to accept his Facebook friend's request. He had posted a video of him on Facebook undergoing this bizarre ritual of getting drenched in cold water. That was my first brush with 'ALS ice bucket challenge' and it did take some time for me to bother what ALS stood for. Initially I mistook it for some reality show, going by the fun, frolic and narcissism the participants were exuding and the way it was going viral with every celeb, Page 3 wannabe and 'like'-starved Facebookers willingly getting splashed with ice cold water and flaunting how hot they looked.

After Googling I came to know that ALS was a grim affair - it stood for Amyotrophic lateral sclerosis, also known as motor neurone disease - a crippling ailment that affects the neurological system, with no known cause or cure leading to paralysis and a very miserable end. Those afflicted with the disease rarely live beyond five years, one notable exception being famous British scientist Stephen Hawking, who was diagnosed with ALS when he was 21 and has now crossed 70. The other ALS afflicted notable figure that comes to my mind is former chief of army staff General Krishnaswami Sundarji, but he could survive only a couple of years after being diagnosed with the disease.

I had a rather nodding acquaintance with a person who was quite literally 'felled' by this ailment. I first met him at a hospital. He had come to visit my father, who was convalescing after a heart attack. He seemed happy and boisterous type and tried to assure me that my father will be fine and not to hesitate to call him if there was any need. Later I came to know he was the latest tenant in the house close to mine.

His name was Thomas, a middle aged man with two teenage sons and like most Malayalees had spent best part of his working years in Gulf. He was quite energetic and was always seen going around in his red TVS Suzuki bike. On seeing me he often used to stop by and enquire about my father's condition. Through neighbourhood grapevine I came to know that he was a small time financier.

Later on during those brief encounters on the road I noticed that his manner of speaking had changed and he had difficulty pronouncing certain sounds, especially vowels. Quite often I had to make a guess about what he was talking about. I thought something had gone wrong with his vocal cords, though never bothered to check out what his ailment was.

A couple of months later he and his bike were not to be seen and it took me some time to realise that he was not stepping out of his house altogether. Instead his house began witnessing a steady stream of visitors.

Out of concern I too went to his house and the sight left me shell shocked. Thomas was now confined to wheel chair and though he could recognise me, he could barely speak and tried to make hand gestures, again with little success as he could barely move them. It was then I first heard about motor neurone disease. As his wife explained to me about the seriousness of the disease, it left me too numbed to say anything. It also made me realise how much of nervous coordination and energy is needed even to do mindless gestures like scratching ones hair or nose. 

Some months later they shifted to a new place and I lost touch with them. But one day one of my neighbours told me that Thomas had passed away. I guess for him it must have been a welcome end to a long drawn suffering.

Coming back to ALS challenge, the current hoopla on social media is showing no sign of cooling off with bucket full of controversies. Matt Damon decided to use toilet water for the purpose (to highlight about scarcity of clean drinking water across the globe) and Obama ducked the bucket challenge, though he agreed to donate for ALS research. The fact that Corey Griffin, one of the pioneers of ALS challenge died in a road accident added a sympathy angle to the event.

Though some reports claim the drive has raised $100 million, many participants in Britain admitted that did not donate to an ALS charity after taking part in an ice bucket challenge. Many participants were not even aware what the event was all about. For them it was just another souvenir to be posted on their Facebook wall.

In India it has mutated to 'rice bucket challenge' with participants handing over a bowl of rice to a needy persons and posting pictures on Facebook. Looks like in this era of social media epidemic even the good old anna daanam has to be clothed in vanity.

Pic courtesy: Wikipedia

Also Read: Bangalore Beat