ICE ON ME

Raju Maama was our favourite uncle. He was a great story-teller. A wave of comfort would settle over me and my brother when he started in his sonorous voice, marvellous stories celebrating the bounty of our Gods – Shiva, Vishnu, Lakshmi, Parvathy. Except he would say Mahavishnu, Mahalakshmi, Ambal. The way he rolled the appellations in his mouth, the pleasure with which he intoned their names was infectious. “...the Goddess is standing behind all the time, a smile playing on her lips, as he rants and bemoans his fate…”, so the story would go, and we would listen, rapt, knowing that a happy end awaited – all ills would be remedied so that the actors of the story could finally sit down to a celebratory feast like Asterix and the Gauls. And instead of roast boar, Raju would count off every single sweetmeat and savoury known to us, pronouncing Murukku and Badhusha, Paayasam and Puliyodarai with the same relish with which he spoke of God’s greatness. We would remind him to add our special requests to the menu – Mysore Pak and Mixture,  roast potato and onion pachadi, Bajji and Sojji. We could taste the food in our mouths just as well as we could feel God’s glory in our hearts.

Raju waited every day for a miracle – a miracle that would reverse his motor neuron degenerative disease. He was sixteen  when he started to stumble too much on the sports fields. The local doctor prescribed iron tablets and vitamins. When he continued to slip and slide, they went in for a second opinion. This was the early sixties in a provincial town in South India, but the doctor was very competent. The diagnosis broke over the family like a bucket of ice imploding inside of them. A hard cold rock wedged in their insides, to be ignored so they could carry on living and laughing. They did, although my grandfather, rather inexplicably, rowed with his superiors and lost his job, while my grandmother got diabetes and lost her temper forever, my oldest uncle went out to sea and my mother decided she would not write the IAS exams after all. But Raju prayed. When asked if treatment options were available, the doctor shook his head and said drily, “Only a miracle will cure him”. And so Raju prayed, for a miracle that would gather the reins of his body and give it back to him.

Raju was a natty dresser, a good looking boy in a Dharmendra-like fat-nosed way. He did not finish his BA program because there was not much awareness of Lou Gehrig’s diseases or Friedrich’s Ataxia- you could not ask for someone to write for you unless you lacked a hand I suppose - and if your handwriting went all over the place, well, then you deserved to fail. Owing to my grandfather’s continuous lobbying he managed to get a few apprenticeships here and there although it was tough to obtain the “PH” classification. He finally got a job as a receptionist in a Public Sector Undertaking; his main concern in an eight to six day was that he should not  have to use the toilet.

Raju was not wheelchair bound until he turned forty, but he struggled to walk, prompting many to ask if he was spastic, epileptic, if it was polio, and once in Ambala, if he had had too much to drink. We tried to explain, but we were vague about it ourselves. The progression of his disease eventually followed that of ALS, but the onset symptoms were those of Friedrich’s Ataxia – it did not matter, no cures exist for these diseases, and management and treatment options are limited as doctors have very few cases to work on. To create a data base of case histories is in itself challenging outside of the First World – and that is why it is wonderful that the ice bucket challenge has done so much to increase awareness  of a disease that hits you in your youth and then proceeds to rob you of all vitality- your ability to use your limbs, your trunk, your neck and your head. Freezing you in your tracks. 

My youngest cousins had no idea what an amazing raconteur Raju Maama had been. Talking to him had become an effort as his slurring got worse by the day; mealtimes were an ordeal with my aunt or my mother on the wait, ready to thump him back to normal every time he choked while trying to swallow. Inevitably the food turned bland and the conversation banal. 

Many people feel that the ALS challenge was “stunty” that too much water got wasted (and I suppose energy too, for we were not digging up ice from the Himalayas), that it was insensitive to the regions that were thirsty for water, and that people were doing the challenge in lieu of donations which was not great. They probably have a point.

I did it because I think Raju would have liked it. His belief in miracles waxed and waned just as his rages ebbed and surged during the course of his life.  He was more delusional than depressive though, and that might have helped him cope, as did a wicked, little-boy sense of humour. He woud have found the idea of dunking ‘ice water’ on one's head, (that’s what he asked for by the way – it was always 'ice water please') hilarious. It would have made his day. And thousands of them doing it for a disability that afflicted him would have tickled him no end. He was not very high minded, I am afraid, but he struggled everyday and was cheerful and courteous to all.

To Raju Mama who sits in the heavens next to Ambal and Mahavishnu and Mahalakshmi -  some ice water on me.