The new Self – Recovering from brain infection

I was sitting on top of a beautiful sand dune watching the sun disappear into the ocean, when I realized that I was no longer fit to do my job. I had travelled here with a group of writers to draft a story for a German travel magazine on the Fraser Coast of Queensland. Our guide for the evening was Nai-Nai Bird, an elder Aboriginal lady of the Stolen Generation. As the soft-spoken artist talked us through the sad history of her clan and her own family, I felt all professionalism fading in the attempt to record her story. My eyes were caught by her twirling fingers, my heart was racing with every brief insight Nai-Nai allowed us into her traumatic childhood and her life-long search for meaning.

Naturally, her story had the power to evoke compassion in even the most stoic of listeners. But it was a crushing pain that overwhelmed me, that made me nauseous and unable to record her story further. I felt mentally paralysed, unfit to continue our tour and unable to write.

It wasn’t the first time that I was experiencing this sense of disabling empathy. It had been four months since I had suffered a brain infection: an encephalitis caused by the herpes simplex virus. The virus had infected my short-term memory, leaving me initially unable to recall events from the immediate past, such as conversations from the previous few days. During my time in hospital I was often not able to remember who had come to visit me the day before, and even after being reminded of the events of the previous day, I struggled to recall them.

In addition to my short-term memory, the virus had infected the temporal lobe, and in particular, the amygdala. Neurologists will tell you that this is the part of the brain regulating our “primitive emotions”. The amygdala plays an essential role during our early years of life, triggering strong emotional responses to sensations such as hunger and pain. What might classify these emotions as “primitive” is the fact that they are not regulated by reasoning. An infant, for example, experiences a strong emotional sensation when hungry, causing it to cry. As other parts of the brain begin to develop, the infant learns that its cry will trigger a response and its needs will be met. Over time, the young child then learns that its hunger will be satisfied through simple ways of communication. The emotional response thus become more regulated.

The HSV encephalitis had caused the amygdala to dysfunction, sending me on an unpredictable emotional rollercoaster ride. When I first arrived at the emergency department, doctors couldn’t find a clear cause to my symptoms of feeling disoriented, dizzy, nauseous and suffering a severe headache. As the day progressed, the emergency department became flooded with patients, doctors, nurses, relatives. I experienced an intense feeling of being overwhelmed by the noise, the crowd and all the movement around me. I took note of this somewhat exaggerated emotional response that appeared unlike my usual self, but I put it down to feeling really unwell and uncertain of what was happening.

When the doctor came to tell me that he believed my symptoms were caused by a migraine, I experienced another emotional reaction that appeared frighteningly unlike myself: aggression. While listening to the doctor’s explanations of all the different symptoms that migraines can have, I struggled to follow the conversation, feeling overwhelmed by anger and the associated confusion realizing that this wasn’t a reasonable or characteristic response to this situation. At this stage I already felt very weak and struggled to even just lift my head off the pillow. Articulating to the doctor that I believed his diagnosis to be wrong and that there was something else going on, is my last clear memory of the day. Of the following hours of the night I can only recall brief moments of consciousness, during which I was blind and unable to speak. At some point I suffered a tonic clonic seizure and the subsequent examinations revealed that I was suffering from HSV encephalitis.

The exaggerated emotional responses continued in the weeks and months after my release from hospital (although fortunately I never experienced this sense of aggression again). I often struggled to watch the news as I found the images of people suffering in remote parts of the world overbearing. So overbearing in fact that they triggered physical reactions: a racing heart, sweaty palms, even nausea.

Empathy was perhaps the most noble emotion that had been increased to a heightened level. Other often overpowering feelings included fear, restlessness, feeling lost and easily overwhelmed. These emotions could flare up unexpectedly, and even in that moment, I could often realize that this wasn’t my usual reaction to the situation, that it was a very exaggerated response. Yet, I felt unable to control it.

Several times, I was overcome by a paralysing fear. It could flare up so suddenly and with no obvious cause that it sometimes took me a moment to identify it. Even at night, I would wake up with a racing heart, trembling and a feeling of pending doom. These were new sensations for me: I had always experienced emotions to be in accordance with something rational, a somewhat predictable reaction to a situation. In addition, emotions had always appeared to be naturally in line with my values: I felt what I thought I should be feeling. Now, this balance was gone, the connection between feeling and thinking had been cut.

From CEO to cleaner

A descriptive scenario was taking shape in my mind:

Imagine that for all your life you have been in charge of an organization. You are the CEO, the one everyone listens to, the one no one questions, the one whose word counts. There appears to be no need to question your authority: Your organization is successful and business runs smoothly.

But then, from one day to the next and without any warning or explanation, you are told that you are no longer the CEO. Instead, you have now been given the role of … the cleaner. Of course, you are outraged, bewildered, perplexed. This is not for anyone to tell you! After all, you are the one in charge, how could anyone tell you otherwise? But all your protests fall on deaf ears. No one in this company listens to you anymore. No one cares. They all just move on with their own tasks, now throwing their rubbish behind them as they go, and expecting you to pick it up.

You spent a very long time in a shock-induced paralysis – unable to accept the new situation. How could this have happened? How could this be right? But then this state of stagnation becomes unbearable. You feel completely isolated. And you realize that doing anything at all will be better than remaining in this frozen state. So, you start your new job. Picking up rubbish, cleaning. By now the rubbish has piled up everywhere. This is no longer the company you know. Slowly, you start to accept your new role, just cleaning up and holding your tongue. There is nothing else you can do.

But then you realize that working as the cleaner you get to discover the deepest, darkest corners of this organization – corners that you would have never visited as the CEO. You recognize that there is much more to this company than you ever knew. You no longer have any say, but ever so slowly you begin to accept your new role and appreciate the new insights that this role is giving you.

Much later, you leave the dark corners behind and walk out into the large, bright rooms, where all the others are working: The entire staff of this company that was once yours. And as you enter the room, you begin to realize that they are all one and the same person: the cleaner, the CEO and everyone in between. They are all one. They are all you!

Every problem carries a gift

In our society, we are set to train our inner CEO from a very early age. After all, this is the rational one, the one who gets the say, the one who takes direction and determines your course. If your CEO is successful, then so are you – professionally and socially speaking. Without a doubt, the CEO plays a very important part in our lives and having her in charge, letting her make decisions and determine our direction, leads us to unlock our potential and to function on our highest level.

Perhaps, it is only in crisis that we are pushed to challenge the dominant role of the CEO. In my case, the encephalitis was this teacher that taught me ruthlessly that CEO is not all that I am. The functional me was badly injured, paralysed, in a state of coma. With the memory inhibited, everyday life became a battle. I could no longer rely on my rational, functional self.

At the same time, child-like emotions flared up that had never received much attention: Irrational fear, panic, impatience. My instinctive reaction was to shut them down, to not pay any attention to them, to shove them back into their corners. But only the CEO can do that. And she’s asleep, and cannot be woken.

Standing still, being unable to move leads to isolation. When we give up, we will be left alone. But as soon as we decide to pick up the battle and to move on – as soon as we choose to fulfil our task, no matter how trivial it appears, and even if it is nothing more than picking up the bucket and washcloth – we realize that we are not alone. It is then that we find an endless network of workers within us that are all fighting for the same cause: To be one.

Before my illness, I had spent my whole adult life as CEO. It was comfortable and easy, things seemed to be in control. To recognize, accept and pay attention to feelings and perceptions, even when they don’t appear to fit into our inner functional design, can be most helpful – even enriching. Once I accepted that it was fear that I felt when I was home alone, once I stopped deriding this emotion and trying to shove it aside, I could start to really look at it and ask for its purpose. It was nowhere near as unreasonable as I had labelled it. It did make sense. But to find its sense it had been necessary for me to put it out into the daylight, to look at it without any judgement and to listen to it closely.

There is reason for fear. It has a purpose. It is there to send us warning signals when we sense danger. It is an important player within ourselves to make us realize our limits, to not put ourselves into situations that can harm us. Our race wouldn’t have survived without it. Once we pay attention to it, hear it out, we can then reassume our role as CEO and find measures to reduce the danger that our fear is warning us about. But if we leave it unheard, it will only become stronger.

What neurology resources call our “primitive emotions” – the ones originated in the amygdalas – I would vote to label them our “prime emotions”. They are the emotions ensuring our survival when we are first born and they have the power to do so again whenever we need them to.

Today, the CEO is awake again and working, but she no longer rules the company alone. She doesn’t ask anyone to follow her lead. Instead she asks every employee for their purpose, for their reason to be here. She not only values everyone’s input, she relies on it. It was a path that may have felt like capitulation at first, but it wasn’t. It was acceptance.

A selective memory

There is another lesson to be learned from an infection or injury to the brain: It makes you more aware of what is important. Our brain constantly filters information, sorting important memories from the ones that perhaps don’t have as much meaning. A natural selection. This filter mechanism was strongly enhanced due to my brain infection. It now takes an active approach to remember facts, experiences, people, names or events. However, this condition has helped me to more immediate awareness for what is important. As a writer, I quickly learned that I needed a new approach to help me remember events, encounters and impressions. I had always taken notes, but I soon realized that it was no longer enough. The camera picture of a landscape that would have previously been sufficient to recollect the memory of a place and its atmosphere was no longer strong enough to pick up the memories and create a story from them. I needed keywords, or even detailed descriptions of the scenery or place.

On the other hand, there would be a few encounters that stood out in pure clarity: This could be the dramatic story of the Indigenous tour guide, the playful encounter with a native animal or nothing more than the quirky remark of the local guy behind the gas station counter.

Realizing that you can no longer rely on your memory in the way that you used to is without a doubt a frustrating experience – particularly so when this change doesn’t develop over time, but with a sudden onset as caused by a brain injury. The good news is: There are ways to improve your memory and find strategies to assist the parts that have been affected. But also, become aware of the selection your memory chooses. Why has it chosen this one memory to stay vividly in your mind?

As a writer I soon learned to draw inspiration from these strong filters in my brain that were leaving me with a much smaller – but more intense – group of memories. If this was the memory that so clearly stood out in my mind, perhaps it could also be the one to grab the reader’s attention and act as a guiding tenor throughout the story.

They say that there is a gift in every problem. A brain infection certainly leaves you with a mountain of problems that appears overwhelming, even paralysing. But there is a major gift in this journey: learning lessons, insights and inspirations that would have otherwise remained covered. It is up to us to find and accept them.

Nai-Nai of the stolen generation had experienced severe trauma during her childhood and lived with it for all her life. It must have taken remarkable strength for her to come out and guide us uninitiated, foreign writers to a place that was of highest spiritual importance to her – the sand dune on the Fraser Coast. Without her guidance, this would have turned into a story of a coastline of striking natural beauty, close encounters with the native fauna, scenic flights over the reef and gourmet seafood. Nai-Nai’s story didn’t take away any of that. But it added depth. It added meaning. It made the picture more fulfilled, more complete. It revealed that there is a dark side to every story, but if you allow it, if you give it a voice, if you listen to it, and if you accept it as a part of the whole, it won’t spoil the picture. It will enrich it.