‘I realised that a caregiver is permanently on a knife’s edge’

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Illustration: Mayanglambam Dinesh
Illustration: Mayanglambam Dinesh

I have been an epileptic from the age of 15. Whenever I used to mull over this fact, I had to flirt with a range of emotions. The guilt, inferiority complex and shame of my teens evolved into confidence and pride in my youth. But today, I am grateful for this challenge that life gave me.

The family support has been exemplary all through. Nothing could exemplify this more than the memory of my father daring me to not use my affliction as an excuse for not excelling in academics. I made into IIT Bombay primarily due to that dare.

It left an indelible imprint on my consciousness and shaped my attitude to being a PWE (Person with Epilepsy – a term not known to me then). This term appeals to me since it looks like you possess something rather than being afflicted by it. It seems to give you the power.

Interestingly, my seizures were rather frequent for most part of my life, until I was 40. This ensured that I was on medicines. Over the years, these drugs changed colour, shape, names and, of course, numbers. This chemical onslaught showed its side effect, though the same cannot be said for their desired effect with certainty.

My PWE status continued to influence my choices and decisions throughout my life. Graduating from IIT gave me a lot of self-confidence and maturity. It was like a good reason to prove a point to myself.

As I inched closer to tying the nuptial knot, somehow I had this great obvious clarity that my medical condition must be shared with the girl’s family, though my parents did not see any merit in it.

I recollect my mother bemoaning my misplaced truthfulness. However, it was this very fact that enabled me to find my life partner. She just dismissed the fact saying, ‘What if this ailment had come on after our marriage?’

She has been a devoted and courageous PWE caregiver besides being a stupendous better half. I realised much later, when my attacks became more serious and more frequent that a caregiver is permanently on a knife’s edge.

The plot of my life deepened when the most dramatic, purposeful and long-lasting change in my life happened six years ago.

After my invasive brain surgery; six landmark years changed my physical, mental and spiritual make-up. I am grateful now for having undergone this experience. It is this surgery that made me more humane, and I spiritually evolved from being a downright atheist to a devout Hindu.

My surgery involved opening up my skull and removing a part of my brain, the part critical to our visual memory. Remembering faces, names and routes to places became next to impossible. PWE took on a new meaning.

I had to adopt new learning strategies and overcome my depression. This humbling experience bordered on almost being humiliating. On the brighter side, it improved my emotional balance and renewed interest in an old forgotten habit of reading. The surgery reclaimed my life from the rut of professional rat-race.

The only time I felt victimised of being a PWE was when my career plateaued following the surgery. But, it enabled me to realise my true passion and led me on a journey of becoming a certified life coach. I completed four online courses in past five years, all thanks to this renewed passion for learning.

Now I see epilepsy more as a backdrop, the underlying script that defines my life and a part of my identity. I became and will become what I want to, because of epilepsy, and not inspite of it.

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