Sometimes you meet people who inspire you to lead a better life than you’ve lived so far..to find ways and means of giving back to society, in the smallest manner possible.
Sometimes you meet people who shock you with their radical thinking or lifestyle, or bewitch you with their ability to ‘live their dream life’ every single moment, or cross the barriers of gender and distance and become friends you’d want to cherish.
Sometimes you meet people who have incredible pain in their lives; pain that makes you count your blessings and look inwardly, scanning every pore of your own being with a microscope to check if you have the right ever EVER be in a position to judge another.
Last evening I met one such family. I got their reference for a Medical Insurance story I am doing for DNA, Pune Edition. Needless to say they were an aggrieved party, cheated at the hands of an Insurance company, until the court gave them a respite.
But that’s not what this is about.
The gentleman I was to speak to was on a ‘moun vrata’ (a vow of silence) taken for 4 months. For 4 long months he would speak not a word, just communicate through writing and gesticulations.
But that’s not what this is about either.
After I ‘interviewed’ him (basically asked him the questions and then peeped into his note pad to see his replies) and was having a lovely cup of tea made by his wife, I heard someone call out “amma, amma” from an inside room.
The lady promptly got up and was soon helping a disabled man walk out. It was clear that he had trouble walking even with the walking stick he had.
After she sat him down she disclosed, “He is my second son. He has an incurable disease.”
As she went on to relate the ordeal of the young man, she further disclosed that her ‘older’ son was also afflicted with the same disease. While the younger one had symptoms since birth, the older one was afflicted after the age of 28.
I researched and found this about the condition.
Cerebellar Ataxia - It is an umbrella term for disorders of the nervous system which cause unsteadiness and a lack of co-ordination
· Its name comes from the word cerebellum, the part of the brain that controls balance and co-ordination
· There are genetic forms of the disease. In addition, some cerebellar ataxias can be caused by brain injury, viral infections or tumours
· However, in some cases it is not known what causes the condition
· It is a progressive disorder. And, while it is not fatal in itself, it can place unbearable stress upon the heart
· Cerebellar ataxia can develop at any age
· It is a very rare disorder without a cure
· However, the disease normally develops very slowly, and it can take years for a person's condition to change
· Walking can become increasingly difficult, and it may eventually become necessary to use a wheelchair
· People with the condition can become incontinent
· Other symptoms can include difficulties with swallowing and slurred speech
· Sight and hearing can be affected. In rare cases, they can be lost altogether
· However, intellectual faculties are not affected
I sat there trying to gulp down the hot cup of tea that suddenly seemed too hot and stubbornly refused to cool down, tongue tied and so at a loss for appropriate words.
The description reminded me of Muscular Dystrophy and I know two people afflicted with it, bravely trying to lead a normal life. I took a guess that this condition must be genetic too. The father wrote on a sheet on his scratch pad, words that I will never forget “No cure any where in the world. No medicine. No stone is unturned – medical, spiritual. It is a very rare disease. Our bad luck. Things cannot be cured have to be endured.”
The vow of silence he has taken is a prayer for his children.
Through the course of my interactions with people, I have seen underprivileged children struggle for existence, their survival dependent on the mercy of others, I have witnessed people going beyond their call of duty and listen to the voice inside their hearts, I have seen angels….
And yet, when I am struck with ‘pain’ I forget all the things I’ve experienced, all the people I’ve known.
What is pain? The going away of a loved one for prolonged durations, their absences, lack of luxuries, unsatiated never ending desires, losing a loved one, letting them go….?
NO. What I saw on the faces of the parents was PAIN.
How ridiculous my own experience of pain seems in the light of their tragedy?
As I was leaving, he gave me a laminated picture of Sai Baba of Shirdi to keep in my wallet (to bring you luck, he wrote). I, a complete non-believer, have it safely tucked in. Somehow I hope that his act of affection (wishing me luck) towards a complete stranger brings HIM good luck. For that, I’d be willing to keep any insignia anywhere, anyone proposes...if it removes their PAIN.