A week when epilepsy and schadenfreude hit home

It is the general apathy towards epilepsy that remains the bigger challenge for those fighting it every day


Abhishek Sengupta

Published: Tue 13 Oct 2020, 12:43 AM

So, it's been exactly a week since our world has turned upside down as parents to a nine-year-old. After a series of tests and hospital visits in a harrowing week, the doctor last Monday concluded that she would have to be under watch and on medicines for at least next two years for symptoms of 'generalised epilepsy'. But had it not been for the diaspora of our well-wishers spread around the world across time zones, we wouldn't have, to be frank, felt the seriousness of it all, that our world may have toppled over and that we should be worried sick.
And here's the good thing about them, the people around you. Like how signages of Delhi Police claim, they are there - with you, for you. Always. And like a legion of an impassioned army acting on Churchill's legendary cry to "never let a crisis go to waste", they do rise up to the occasion to use it to drive that sense of fear, caution, circumspection, prudence, or call it what you will, that may have gone missing in you at such a time of 'crisis'. And sometimes when you want to believe everything is fine, that everything will be alright, they come from those corners of the good old world to give you a gentle yet dogged nudge to not be foolhardy because everything may just not be right, after all.
So for the last seven days or so, we have got pulled in and out of innumerable impromptu counselling sessions and TED-styled talks by our friends, family, acquaintance, colleagues, and pretty much anyone else that's stopped us on our tracks to ask us about our little one.
From tips on how to become good parents to demonstrations of how to increase positivity at home to 'keep the devil out', we have heard, seen, and experienced it all in the past week, although we have tried to reason each time that our little one is actually doing alright and it's not as bad as they think.
Now, it's not the prognosis or the diagnosis but the stigma that's been the real bummer. You see epilepsy is neither a communicable disease nor a sign of madness, as many often think, and there is no one big reason for it to occur in a person of any age. From Pope Pius IX who had childhood epilepsy to Vladimir Lenin, the first Soviet premier who developed epilepsy in his last few months to Caligula, the famously philandering Roman Emperor, to American rapper Lil Wayne and former cricketer Jonty Rhodes, the neurological condition has afflicted some of the world's most famous personalities in history and modern times. Even Socrates, Napolean, Joan of Arc, and Julius Caesar were believed to have had epilepsy while Russian writer Fyodor Dostoyevsky's epilepsy was so extended that he even incorporated his experiences into his novels - creating four different characters with epilepsy, that is only truly characterised by just unpredictable seizures and nothing else.
Yet it is the general apathy towards epilepsy that remains the bigger challenge for those fighting what is amongst the most common disorders of the central nervous system. Only here, the brain activity, for that period of seizure, becomes abnormal, causing unusual behaviour, sensations, and sometimes loss of awareness. The fact is anyone can develop epilepsy at any age, irrespective of the ethnic background or race.
Yet in our parts of the world where we come from, epilepsy and epileptics come and go with a certain echo about them. I wouldn't have realised the subtlety too had it not hit home and I am glad that it has because I have now looked and asked around only to rediscover two more of us in the same crowd, fighting the same stigma as ours every day. One an epileptic herself and one the father of an epileptic, like me. It's about time for it all to change - for better and not worse. And it should be much more than schadenfreude, the German word for 'harm joy' or pleasure at another person's misfortune, that should make you pry into the lives of epileptics you know! 
- abhishek@khaleejtimes.com 

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