I am just another insignificant statistic in what is now a national debate around the tragedy in Gorakhpur. Or perhaps I am not a part of the records. I will never know. But this much I do. I am a survivor. I survived encephalitis. I fought the odds. I continue to fight it. And this series of dispatches is not an accident, but the outcomes of “hacks" that I keep discovering along the way to keep pace with “life" after my tryst with insanity.

I haven’t been to the ground zero that is Gorakhpur and eastern Uttar Pradesh, where the tragedy unfolded. All of what I know are from news reports. The most recent one from there at the time of wrapping this dispatch up mentioned that only 42% of the vulnerable children who succumbed to encephalitis had been immunized. Much sound and fury has been made and multiple reports have emerged.

Whatever the truth and casualties be, I do know a few things about encephalitis on the back of personal experience. And I guess few people will tell you this as bluntly, and in as many words. But I can. So, I will.

Those kids who have died over the years and continue to die, are perhaps better off dead. Because if they’d survived, life may have perhaps have been crueller to them. Not for anything else, but because they were cursed to be born poor, and the system is loaded against them. If you think my saying this in as many words makes me heartless, that’s your prerogative. But I must put things into perspective.

I first visited insanity a little over six years ago when encephalitis struck. There are variants of the disease. What is being discussed in public domain now is Japanese encephalitis. I had contracted the herpes simplex variant of it. If you are interested in understanding the clinical nuances, may I point you to this article published in the Journal of the Neurological Sciences? I’ll limit myself to saying that while similarities between the two exist, there are some differences too. That is why the nature of the current political discourse and apathy around it bothers me.

Not for anything else, but if enough money is expended into public health programmes, Japanese encephalitis can be controlled. What causes herpes simplex is still unclear. But that encephalitis will be controlled was a promise that was made over 10 years ago in a different era. That was when a similar crisis had struck and the government of the day had pledged to raise spending on public health from 1% of GDP.

Eleven years later, I am told India is a stronger, richer country and can eyeball pretty much any super power in the world. But the promise remains unfulfilled.

This, despite the fact that the protocols to be followed when a crisis of this kind strikes were updated as recently as last year and all evidence has been meticulously documented by Indian researchers since 1978. The facts done with, what does insanity triggered by encephalitis feel like?

I first wrote about it a few months after I was finally allowed to get back to work at the Indian edition of Forbes magazine, of which I was the managing editor then. I don’t remember writing a word of that piece. Because one of many things encephalitis does to survivors is that it claims your memory. And with it your sense of time and history. Back then, this is what I knew.

“Truth is, each time my phone rings, more often than not, I can’t put a face to the name flashing on my screen; when I can, I’ve forgotten what my relationship with the person is and I don’t know what I am supposed to talk about. I’m better off not taking the call."

“Truth is, my world has shrunk hopelessly. The newspapers I used to devour so voraciously every morning seem intimidating because context has been stripped from everything I read. I feel helpless standing by the side of the road because I’ve forgotten how to cross it on the face of oncoming traffic. My neighbourhood, where I’m reasonably sure I’ve lived for 21 years now, looks alien. This city, that I love so much and where I’ve lived all my life, seems like a foreign country."

“... A few weeks ago… or was it a few hours ago—my sense of time is all distorted—I took a long walk in a park with my dad’s older brother. For as long as I remember, I’ve worshipped him for his intellectual bandwidth. And I’ve loved him because he possesses that rarest of human virtues, compassion, in abundance. We cracked some awfully stupid jokes only the both of us could laugh at. And when it was evening, he insisted on going back to Cochin, because he doesn’t like to stay away from home for too long."

“Soon after he left I picked up the phone and called my cousin to tell her how good it was to see Cliffy Uncle after such a long time. She paused, and then quietly told me that Cliffy Uncle died three years ago. I’m not entirely sure now, but I think I went to a corner and cried a while."

“I’m not sure now why I cried. Maybe, it was because Cliffy Uncle died. Or maybe it was because that was the time I started to figure not everybody could see the people I could see."

With the benefit of hindsight, I can add some perspective here.

That was written six years ago and I was miserable. I was 38 and at work at an influential media outfit. Between my immediate colleagues, friends and close family, they had me wrapped in a cocoon and got me rushed into a state-of-the-art hospital. I know nothing of what transpired.

I’m told I used to scream into the nights because I’d have nightmares. At other I’d laugh like a maniac because I was conversing with people only I could see. If it had been another time and era, I may have been confined to a mental asylum.

I’m also told that the first line of treatment when encephalitis strikes is a drug called acyclovir. It was administered to me promptly. As luck would have it, it didn’t work on me. The second line of treatment to get me on the path to recovery needed more expensive drugs and would cost a few lakh rupees—all of which I was blissfully unaware of because I was talking to ghosts and hallucinating.

Imagine now, what nightmares and hallucinations in the boondocks can do to a kid without basic access to medical care. And what if the first line of treatment doesn’t work? A fate worse than death awaits them if they survive. Surviving just isn’t worth it. Assuming you do survive, you must be rehabilitated and taught how to live again.

Six years ago, when the doctors thought it appropriate, I was discharged from some silly-looking costume they insist you wear in hospitals. What neither I or those around me were told then was that I would never be the same person again. And that my life would have to be rebuilt from the ground up. That job was handed over to Siddhika Panjwani, a psychotherapist. I don’t remember meeting her then.

My notes suggest she was staring at a tough job on hand. Because while encephalitis had claimed my memory, it had taken away the ability to form new ones as well. For all practical purposes, I was dead. But then, on the other hand, by all clinical definitions, I was alive. For all practical purposes, I was too young to die and too feeble to live. But she wasn’t willing to give up on me.

There exist very few professionals like her in India. Those that do are confined to the metropolitan cities and work out of the larger hospitals. Not for anything else, but because the public healthcare system in India does not have the infrastructure to support the demands it places on professionals like her. Most people who visit her are traumatized. Before writing this dispatch, I called her to ask whatever happened to me. Because I don’t remember anything.

Turns out, when she first saw me, she was unsure whether I would ever be able to go back to life or my chosen vocation as a writer. This was because back then the files indicating my status told her my bilateral hippocampus was infected. Translated, there was nothing she could do to rehabilitate my memory. All evidence suggested that whenever I get back on my feet, I may do something else—less taxing perhaps. I now know I was among the outliers.

Her primary concern then was to figure out how best to ensure I did not stress myself out while I relearnt how to live. Because the stress of relearning how to live coupled with the trauma that accompanies not knowing who you are can trigger more seizures—and with it, more complications.

The doctors could keep me alive. But I’d be as good as a vegetable. A burden on everyone. Friends, family, the larger society. Just a body that lives and breathes, but cannot remember anything, think, or contribute anything meaningful. And society insisted it wouldn’t let me die either.

What, I asked of her, would happen an episode like this were to hit a child? Dr Panjwani told me that her expertise lies in dealing with adults. But in the limited interactions she has had with children who have had similar episodes, the chances of their recovery are higher because “unlike the adult brain, paediatric brains have more neuroplasticity".

That said, she clarified that it does not take away from the fact that if a normal child were to be afflicted by encephalitis, their development would be set back by a few years to the extent that people may imagine they are mentally challenged.

Add poverty and ignorance about the protocols to be followed, and their chances of getting back to normal or their full potential are remote—if they survive that is. And on top of all of this, add the trauma of being the parent to a lovely child who has gone all awry. Even if they had all the monies at their disposal, they cannot buy either the past or the future.

So, how did she get me back on my feet, I asked her. Turns out, contrary to her expectations, the work I was engaged in insisted as a journalist insisted I be a high-functioning individual. Not just that, she had observed I was a voracious reader from my early years. So, when compared to peers in my group, I had still retained enough mental muscle in me to create an ecosystem unique to me using technology and people.

“Your neuronal networks were stronger. Other regions of your brain started to take over to compensate for the loss. In your case, the temporal lobe of your brain took over. Without your knowing it, your executive function kicked in to compensate for the loss in memory."

When she thought her job was done because I had “exceeded" her expectations, as per all global protocols, I was handed over to Kuldeep Datay, a clinical psychologist. My visits to him continue six years down the line. He is the one who keeps me emotionally anchored. Because a scar on the brain is not just physical, but wrecks psychological havoc as well. It needs a trained professional to help navigate the waters when they gets choppy. Because every once a while, you go into that rabbit hole called insanity and nobody knows why it is that you’re going beserk.

These protocols are mandatory in the First World, are part of the public healthcare system and covered by insurance. In our part of the world, consider yourself lucky if you get as much as access to acyclovir—never mind insurance or even access to compassionate professionals like Dr Panjwani and Datay.

In my case, I guess there was something called “Lady Luck" or “Goddess Fortunate" or whatever you will. This creature had conferred privileges upon me. It provided me access to not just the basic drug, but a second line of treatment and everything else the First World could have provided. Despite all this, how were my family, my friends or I to know what kind of a volatile creature I would morph into?

In the brief moments when sanity prevailed, it occurred to me I was living in something I had seen only in movies like the Matrix. And that at some point, I had to begin hacking my way back to life.

On hearing of the episode, my friend Manu Joseph, a former colleague and a columnist for Mint, asked if I could write a piece on how I began to do that. And so, a few years ago, “... I wrote to myself, I ought to think of myself as a company that had gone bankrupt. But now there is a new CEO in place with a mandate to turn it around. I guess I derived the metaphor from the fact that I trained as a business journalist and it was embedded in my psyche. The question was how."

“The most obvious thing to do, reason told me, was to make an attempt at reclaiming my past. If I did that, I’d perhaps be able to put my present in context. Fortunately, like I said earlier, I hadn’t forgotten how to use a computer. But because I am a bit of a security freak, my machine was password protected and the information encrypted. Only I knew the passwords. If I could ‘hack’ into my machine, I could begin my journey."

But that was a few years ago. Much water has passed under the bridge since then. Those so-called hacks now sound outdated. I have far more sophisticated systems in place, most of which are powered by advances in technology, most notably artificial intelligence and voice recognition.

By way of one example, once upon a time I used to punch notes into Evernote, a piece of software that resides on all my devices and on the cloud. This allows me to pull memories out when I need to, wherever I may be. But to punch it all in used to be a painful affair. But all thanks to advances in voice recognition technology, everything is dictated.

Six years ago, I was told, it would about five years for me to “get back to normal". What does my report card look like now? It reads something like this.

Every morning, I wake up anywhere between 4.00am and 4.30am and ask myself a few questions—all in the third person.

• All right, where are you now and how did you get here?

• Tell me all of what you did yesterday, as well as why and what time you got to bed.

• How do you feel right now? Is your head clear?

• Are you ready for a cold shower?

Depending on the responses, protocols I have developed over the years kick in. Work on what protocol to follow depends on answers to the questions above. These protocols are a work in progress and I continue to tweak them as I discover more about the world. I discuss them every once a while with Datay.

For instance, if the responses to the questions follow a certain pattern, I know a cold shower works for me to kickstart my metabolism. More recently, 30 minutes of meditation has been incorporated, with a focus on breathing. That done, another set of questions follow:

• Is your statement of intent for the day ready? Can we do a quick review and figure how it aligns with mid-term and long-term objectives?

• Can you now review it against your list of things to do today against what you had jotted down last night?

• How much time for slack have you built into this?

• Can we review your notes for the last few days? These include poring over notes made on the margins of books, abstracts of articles, notes from meetings attended and a quick glance at emails that need to be attended to.

• Can we get down to execution? Your clock starts now.

All this said, I still cannot find my way around where I live. Simply put, my internal GPS is all messed up. I mean, I don’t know how to find my way to office from home. That is why I have a Man Friday who doubles up as a driver to watch my backside. The bloke still hasn’t wrapped his head around why I use something like Google Maps to navigate to a place I claim to be familiar with.

Then there is the fact that while I can remember things for longer than I used to be able to, I know I will forget. So, everything must be recorded and backed up. Evernote does a good job of all that. But to be doubly sure, there other apps in place that use protocols like IFTTT (If This Then That) recipes. These allow me to automate a lot of my life and save on time—that most precious of resource for me.

I can go on and on into the nitty-gritty of software apps and tools. But that would be missing the forest for the trees. From a much larger perspective, this is what I know:

• I’ve got to work much harder than anybody else I know to keep pace. That is why it is important I start my day before anybody else does. This is because while the half-life of my memory has certainly improved, it isn’t reliable. So, by the time everyone is up and ready to get going, I have to be up to speed as well. And to do that, I’ve got to start earlier. I’d love to sleep in at times. I don’t have that luxury.

• Then there are times I should make quick calls on whether somebody can be trusted on not. The most reliable indicator most people go by is someone’s history—that can be pulled out from memory. But my “reliable indicator" is broken. And people have let me down often in the past. That is why save a few people whom I trust blindly, I follow what geeks call the “trust-no-one-architecture".

Instead, I keep a close watch on developments in state-of-the art technologies that I think may not let me down. These are used and discarded as better iterations appear. So, while everybody worries about the implications of artificial intelligence for their future, I look forward to it. My present and future rest on how it evolves and how do I deploy it tactically.

• People worry about Big Data and how it may intrude into their privacy. I don’t. Because I need data on people to make sense of them. I collect it from every source and have them stored in folders for my sake. My memory cannot access it like you can. To that extent, I love Big Data and the insights pattern recognition software offers. It also means I can cut through the fog and get to the point. I like it that way.

Does that make me a cyborg? I think not. On the contrary, it makes me more human. One of the good things about forgetting is that you let go and move on. When looked at from a philosophical prism, that is what the world’s greatest philosophers and religions suggest. And that you live in the present.

Most people expend their lives trying to get there. By a quirk of fate, I live in the moment. I have no past. I don’t have to try too hard to live in the present. That is also why I have no prejudices. If any exist, it lasts a while, and then evaporates. Sometimes, I think of it as accelerated nirvana on pills!

I can write and say all of this because intervention arrived at just the right time, because I was protected and among those privileged people in an urban environment with a family and friends who guarded me fiercely.

But what if I had been in the Gorakhpur of today? Or for that matter, 10 years ago when then American president Bill Clinton came visiting and the roads were being tarred to make the city look even as children were being mauled by encephalitis? What sense would I make of it if I were the victim?

What if I am among the “People Like Us" who may read this on a Sunday morning who may read this or feel outraged while watching television before heading out for an expensive meal?

If this isn’t moral bankruptcy, what is?

Charles Assisi is co-founder and director, Founding Fuel.

His Twitter handle is @c_assisi

Comments are welcome@feedback@livemint.com

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