[The Scream, undated drawing by Edvard Munch (Public domain), via Wikimedia Commons]
If there is one person I know of in the public domain who will understand my anger, it is Susannah Cahalan, a journalist and best-selling writer of the book Brain on Fire: My Month of Madness. Because much like what she went through, six years ago, my brain was on fire as well. Since then, the fires in my brain have been extinguished. But the embers remain and I remain alive. A “brain on fire” is widely reported in the public domain as something called encephalitis. I’ll come to what that means and why Cahalan’s story matters a little later.
But if she were to hear of all of what has transpired in Gorakhpur until now, she would be as furious as I am. She and I are among those who survived against the odds. The only difference is that she lives in the First World that is New York City and I am, for all practical purposes, part of a Third World country called India. It is just a coincidence that I am among the privileged here who lives a First World lifestyle because I have access to medical care.
I don’t think the same can be said of the kids who continue to die in Gorakhpur, eastern Uttar Pradesh, and other parts of India. Because the public health care system is broken. Not that anybody gives a damn. It is entirely possible, I am not a part of the records that would have documented me as somebody encephalitis got to. I will never know. But I know I contracted the disease. I survived it. I fought the odds. I continue to fight it. And this story is not an accident. But the outcome of “hacks” that I keep discovering along the way to keep pace with “life” after a close brush with death, diving into the pit that is insanity, and fighting battles every day to win a war in the longer run.
I haven’t been to Ground Zero where the tragedy is now unfolding. All of what I know is from news reports. The most recent one at the time of wrapping this piece up is that only 42% of the vulnerable children who succumbed to encephalitis had been immunised. It needn’t have been this way. But because things are the way they are, the debate is a twisted one in the public domain. It succumbs to stories told by people of all kinds that it may meet their personal agenda. So, I might as well join the chorus and share my perspective.
Nobody will state this as bluntly. And in as many words. Those kids who have died over the years and continue to die in Gorakhpur are perhaps better off dead. Because if they’d survived, life may 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 makes me a heartless sonofabitch, that’s your prerogative. But I must add some more perspective here.
I first visited the pit that is insanity a little over six years ago when doctors finally figured I had contracted the deadly encephalitis virus. There are variants of the disease. What is being discussed in the public domain now is Japanese Encephalitis. What I had inside of me was the Herpes Simplex variant, an auto immune disorder. If you may be interested in understanding the clinical nuances, may I point you to 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. This, because work on eradicating Japanese Encephalitis could have begun long ago. It is already on the decline in neighbouring Sri Lanka and Nepal.
That is because the governments there are expending money into public health programmes. It was a promise that was made over ten years ago in India as well. That was when a similar crisis had struck and the government of the day had pledged to up 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 superpower in the world. But the promise remains unfulfilled. Our children continue to die.
This, although what protocols ought to be followed when a crisis of this kind strikes was updated as recently as last year and all evidence has been meticulously documented by Indian researchers since 1978.
The powers that be have no idea what it feels like to be struck by encephalitis
Perhaps, the powers that be have no idea what it feels like to be struck by encephalitis. I am uniquely placed to tell that tale.
I first wrote about it a few months after I was finally allowed to get back to work at Forbes India. I don’t remember writing a word of that. Because one of the 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.
“… I feel helpless standing by the side of the road because I’ve forgotten how to cross it in the face of oncoming traffic. My neighbourhood, where I’m reasonably sure I’ve lived for 21 years now, looks alien.
“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…. 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.”
That was six years ago. I was 38, feeling miserable, was employed at an influential media outfit and between my immediate colleagues, friends and close family, they had me wrapped in a cocoon. I know nothing of what transpired then. They tell me I used to scream into the nights because I’d have nightmares. At other times I’d laugh like a maniac because I was conversing with people only I could see. If it were 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. Apparently, it was administered to me promptly. But it didn’t work. 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.
If you want to know what that looks like from the outside, may I suggest you pause for about one-and-a-half minutes and watch a preview of the movie that is based on Cahalan’s book?
Imagine what nightmares and hallucinations can do to a kid in the boondocks without access to basic medical care
If this is what happened to an adult like her and a 38-year-old me, imagine what nightmares and hallucinations can do to a kid in the boondocks of India without access to basic medical care.
Inevitably, the first line of treatment does not work in the best of cases. Because encephalitis is a difficult disease to detect. If detected and the treatment does work, a fate worse than death awaits on survival. Because once you get past dying, those that get to live must be rehabilitated and taught how to live again.
I got past death, was discharged, and what nobody close to me was told was that I would never be the same person again. That job instead was handed over to Dr Siddhika Panjwani, a neuropsychologist. 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. Effectively, I was dead. But then, by all clinical definitions, I was alive. All said, I was too young to die and too feeble to live. But Dr Panjwani was the kind who wouldn’t give up so easily.
There are very few trained professionals like her in India—or for that matter in other parts of the developing world. Those that do exist are confined to cities and even here to 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 traumatised. Before writing this piece, 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 I would ever be able to go back to life or to a profession as a writer. This was because back then, my files told her my bilateral hippocampus was infected. Translated, there was nothing she could do to rehabilitate my memory. Instead, all evidence pointed to that whenever I get back on my feet, I may have to settle to do something less taxing perhaps. She and I now know, I am a statistical improbability—an outlier.
No medical professional had the heart to tell me, this is what my potential future looked like then. Perhaps, a gentle person; perhaps a tough character to deal with. In any which case, a body with a broken mind.
That is why Dr Panjwani’s primary concern back then was to figure out how best to ensure I relearn how to live. Because the stress of relearning how to live coupled with the trauma that accompanies not knowing who I am can trigger more seizures—and with it, more complications. But that would make a vegetable out of me—a burden on everyone. I’d be a living body that can breathe because society would insist it cannot let me die.
What, I asked of her, would happen if 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.”
If a normal child were to be afflicted by encephalitis, their development would be set back by a few years
That said, she clarified that it does not take away from 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 on what are the protocols to be followed, and their chances of getting back to normal or their full potential are remote—if they survive that is. Into 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 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 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 waters when they get choppy. Because every once in a while, you go into that rabbit hole called insanity and nobody knows why you’re going berserk.
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 is this thing called “Lady Luck” or “Goddess Fortune” 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, friends or me 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, friend, and a columnist for Mint, asked if I can do a piece on how did I begin 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.”
But that was a few years ago. Much water has passed under the bridge since then. The so-called hacks I deployed then 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 technologies.
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 of wherever I may be and when I need to. But to punch it all in used to be a painful affair. Now, all thanks to advances in voice recognition technology, everything is dictated.
Six years ago, I was told, it would take 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 4:00 and 4:30 am 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, why and what time did you get 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 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 on what does he think of it.
For instance, if the responses to the questions follow a certain pattern, I know a cold shower works for me to kick-start my metabolism. More recently, thirty 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 does it align with mid-term and long-term objectives?
- Can you now review it against you 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 over 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 back. He 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, 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-gritties 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 AI on their future, I look forward to it. My present and future rests 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.
I can write and say all of this because intervention arrived at just the right time, I was protected
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, 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 were in Gorakhpur now? Or for that matter, ten years ago when the former American President Bill Clinton went visiting and place and the roads were being tarred to make the city look pretty, 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 and feel outraged or watch a television report on the theme before heading out for an expensive meal?
Cahalan would not have any of it. Her family wouldn’t take it lying down, no media outlet would let the system get past, and whistle-blowers would get in to pull up those concerned until they are hauled over coals. That is why diseases like these are practically unheard of in those parts of the world.
She was misdiagnosed thrice as bipolar, psychotic, and schizophrenic at the same hospital by three different doctors. The system she lives in may not be perfect. But it has the humility to accept it is broken, look back and try to fix it so that no more Susannah Cahalans occur again. That is why a book she wrote went on to become a bestseller, a movie was made of her episode, and the system spent time on introspecting.
The “money-is-not-there” argument does not stand up to scrutiny either. China, that beast whose title India wants to usurp, understands that it cannot grow at a sustainable pace if it does not up spending on public health. That is why, unlike India where it is either lost in transit or diverted to protect “Holy Cows” like anti-Romeo squads, China has upped it to 3% of its GDP.
All professionals I spoke to were unwilling to come on the record. But it infuriates them because this is money they can do with. When probed on why, the stock answer was this. The nature of vaccines to tackle diseases like these are such that they must be monitored constantly. This is because the viruses they are intended to tackle mutate every year. Monies are needed to keep the vaccines up to pace. But, like I said earlier, our priorities lie elsewhere.
If this isn’t moral bankruptcy, what is?
(This is an adapted version of A tryst with insanity and encephalitis that was published in Livemint)
(Correction: An earlier version of this article identified Dr Siddhika Panjwani as a psycho therapist. She is a neuropsychologist.)