What It's Like to Lose One's Memory

A first person account of a surreal world after the loss of memory

Published: Sep 19, 2011 06:33:37 AM IST
Updated: Sep 16, 2011 12:01:26 PM IST
What It's Like to Lose One's Memory
Image: Kindersley Dorling/ Getty Images

In his award-winning book, The Making of Memory, a copy of which sits on my desk right now, Steven Rose writes, “We know who we are and who other people are in terms of memory. Lose your memory and you as you cease to exist.”  

If Rose is right, and I suspect he is, I’ve been dead for over four months now. I say dead because as I begin to write this, we are in the middle of May 2011. I don’t remember a thing of what’s gone on around me over the last… four months. I don’t remember people I’ve met, things I’ve done or places I’ve been to.

It was awfully tough to walk into office last week and not know the names of at least half the people I’ve worked with to launch this publication. Pictures from the launch event that feature me seem surreal; I don’t remember the party. I thought I’d died and didn’t remember the funeral.

Then maybe, I told myself, this is what they call an out-of-body experience. Or maybe it’s just a nightmare that hasn’t ended yet. But my name appears on the imprint line as editor, and there’s a signed note from me in the launch issue, so I guess I’ve played a part in putting this title together. (I must confess I like most of what I see. Do you like it? The nude angel on the cover: Painfully beautiful, isn’t she?)

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.

Truth is, I, Charles Assisi, adult, journalist, editor, father, perfectionist, can’t get around without help. I guess this is what it must feel like to be dead.

My brother, a neurobiologist, tells me it’s okay, that it’s only a matter of time before my memory begins to come back. Another three, maybe six months and I’ll be ‘me’ again.

Until then though, I will have to make do with props, with notes to myself, with a little help from friends and simply accept that I’ve lost my memory.

It would only be fair if you stopped me right here and asked me, How can you write about what is it like to lose your memory when you have no memory? Sounds a bit illogical, doesn’t it? Brings to mind those lovely lines from ‘Kathy’s Song’ by Simon & Garfunkel:
And a song I was writing is left undone
I don’t know why I spend my time
Writing songs I can’t believe
With words that tear and strain to rhyme

How do I begin to explain all of this? How do I remember ‘Kathy’s Song’ when I have no memory of so many other things that have passed? Ought I not to have forgotten the English language I write these words in? How do I remember Nayantara, my five-year-old daughter, for whom I write this? Dammit, how can I remember to write when, as Rose says, I’ve ceased to exist, when I am dead?

I’m not qualified to answer these questions because I’m neither a neurologist nor a philosopher.

I’m just a regular guy who had a seizure in the office. (They tell me I was reading the first cut of a mind-bending piece that’s in the issue you’re reading right now. I can only say, smiling, Mr Sinha, I look forward to reading your story for the first time. But I need to unbend my mind first.) I was taken to the hospital by friends at my workplace. There I had several more seizures, so my friends tell me. Doctors diagnosed me with encephalitis — “brain fever” we laypeople call it — which scarred my temporal lobe.

I refuse to get into the minutiae of what all this is about because I’ve figured it doesn’t matter. What matters to me right now is that I don’t know if I’m dead or alive; if I’m awake or dreaming; if I’m in my body or outside it; if I’m writing this or imagining these words. I know…I think I know…that I’m doing this because my friend Peter Griffin asked me to. He tells me I’m not dead; instead, that I’m in a unique place where few people will ever go to.

And that if I don’t write about it while I am here, I won’t remember it later, and I’ll never be able to tell Nayantara what the place is like. Manipulative b*****d.

Truth is, I so wish I didn’t have to write this.

But here I am, in my room, my familiar, well-loved space, enveloped in a fog. Nothing is what it seems.

What It's Like to Lose One's Memory
Image: Getty Images

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.

I was seeing ghosts, you might say. I tell you they’re real to me.

In that one moment I knew I was so hopelessly lonely, so full of despair, that even ‘Kathy’s Song’, where I’ve sought refuge so often in the past, felt inadequate. As the song goes:
And so you see I have come to doubt
All that I once held as true
I stand alone without beliefs
The only truth I know is you.

As beautiful as those lines are, my truth is more mundane.

It lies in what Dr. P.P. Ashok tells me on my weekly visits to his clinic. The lanky neurologist, who I distinctly remember training with when I was a long distance runner, didn’t frown even once when he was told of the smells I smell that no one around me can detect. He told my dad and Anna, my wife (they’re both with me on every visit), “The perverted sense of smell is a phenomenon commonly associated with damage to the temporal lobe.”  He also insists he isn’t a distance runner. I’ll give him this: With the kilos I’ve piled on, nobody, not even me, can imagine I once ran at all. But I have pictures and a bloody certificate to prove I did the Mumbai half-marathon.

The truth I now know is that the good Dr. Ashok looks at me in much the same way I used to look at specimens stored in formaldehyde jars in the zoology labs of St Xavier’s College, where I graduated from. My unreliable memory makes me an interesting object of study. He asks a few quick questions each time we meet: You feel okay today? How did you get here? What did you eat this morning? What about last night? Whom did you last make a phone call to? What did you talk about? And then he turns to Anna and asks her to corroborate my answers. He asks her more questions about how I’ve been. I am but a listener in this conversation about the me-ness of me. I wait with bated breath until he pronounces judgement: Am-I-okay?-will-this-end-now?

The last time we met, he told my wife I’ve gotten much better — that the corners of my mouth don’t droop any more, that my gait seems steadier, that I sounded much surer of myself, that he was comfortable reducing the potency of the drugs he’d put me on and that I’d recover in the timeline he expected. He said all of this without looking me in the eye. It was my dad and Anna he was talking to. They, after all, are the ones with memory. They are the ones who exist. I just listen in from the envelope that now accompanies me everywhere, my personal portable fog, my formaldehyde jar.

It is easy to feel terribly angry. I’ll tell you why.

I’ve lived a full life, I’ve read widely and well, absorbing, learning every day. I’ve made a living thinking on my feet, pulling things out of my memory and synthesising them on the fly.

Now, thanks to a virus that could infect anybody whose immune system is compromised by something as trivial as a common cold, because a few damn neurons are misfiring in my head, because of a bloody seizure that lasted a few seconds, I have lost all that it took me all these years to build.

Add this. I’m an alpha male, and I’m proud of it. I’m in control of myself and my environment. But, in the last few months, Anna tells me, there were times I couldn’t so much as go to the loo without help because I didn’t know how to untie my pyjamas. You want to talk to me about humiliation?

Truth is, I now know intimately that nothing is what it seems it is. I’ve seen people you can’t see, heard sounds you can’t hear and smelt things you can’t smell. I’ve seen a world few of you ever will. And it is terrifying.

As I crawl out, slowly, trying not to lose my footing, all I know is I don’t ever want to go back.

But no, I don’t feel angry. What I feel, instead, is overwhelming gratitude. Walking out of Dr. Ashok’s clinic, my eyes fall on this beautiful, beautiful child. He couldn’t be a day older than five. He’s going through much the same thing that I did in March, only worse. He’s seeing more ghosts than I did and feeling as terrified as I was. Except that unlike me, he doesn’t stand a chance. When I see such heart-breaking beauty, I’m grateful for having another chance at life. Surely, surely, he deserves better.

The nurse told me he’d had four seizures in the one hour he was there. Now he can’t move his limbs, and he doesn’t know where he is. The young couple that cradle him in their arms look exhausted. I guess it’s only a matter of time before he dies.

I don’t know how else to say this, but he is better off dead. I should know.

I don’t know what his name is. But in my head, I call him Aayushman, which means long life. The irony isn’t lost on me. I came awfully close to ending up like he is. I didn’t. I live to tell the tale.

Whom do I thank for that? I don’t know who I owe my life to. ‘Kathy’s Song’ — how do I remember ‘Kathy’s Song’? — continues to play in my head
And as I watch the drops of rain
Weave their weary paths and die
I know that I am like the rain
There but for the grace of you go I.

(Charles Assisi wrote this in May. He has since recovered and resumed work.)

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(This story appears in the 23 September, 2011 issue of Forbes India. To visit our Archives, click here.)

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  • Anu Kurian

    You are an incredible human being Mr Assisi. It takes a lot to write about what you went through! Did you ever ask the question why me when you first encountered it?

    on Sep 27, 2011
  • Lubna

    Dear Charles, I can understand this phase is tough. But you have friends who are there by your side. Sometimes help, as you mentioned, has to be taken. It is quite difficult to be the one seeking help, believe you me, I know. But in the end, you do learn a lot about yourself and also who your true friends are. You are lucky to have lots of true friends, those in Forbes and those outside. Hang in there, don't lose heart, no matter how tough things may seem. Take care. Lubna

    on Sep 25, 2011
  • Geetha

    "I've lived a full life, I've read widely and well, absorbing, learning every day. I've made a living thinking on my feet, pulling things out of my memory and synthesising them on the fly." It is this razor-sharp mind that makes Mr. Assisi's plight even more poignant. Am sure glad to know that he is better now. Here's wishing him a total recovery.

    on Sep 22, 2011
  • Amar Mudliar

    Big favor to us you back. thx

    on Sep 21, 2011
  • Karmakant

    Well u say u have lost ur memory..but its amazing u can write.. BTW the ailment u mention whats the prognosis??

    on Sep 20, 2011