Waking up

As soon as we sat down, I noticed her expensive leather boots. Well, they looked expensive to me. I didn't think I had seen them before and I imagined they were probably brand new. Today Nell was wearing an elegant cream-coloured suit with earrings and a necklace. I had met her twice before and had noticed that she was always very well turned out. Her make-up and the whole way she presented herself seemed meticulous and carefully thought about. 

The referral had suggested that we were meeting because Nell could not accept that she was going to die, and would become furious whenever other people implied that this could happen. And yes, she certainly made it very clear in our first meeting that this would be the case for me too. It was a no-go area, because she was not going to die, so she was not going to talk about it. Naturally I found it interesting that she had agreed to see me.

In that first session Nell told me about the experience of her diagnosis, the sequence of events, but always with an upbeat positive manner, concluding that she was having the best-available treatment, world class, so everything was fine. She only began to cry when she started telling me how vital it was for her to be fully engaged with her life right now – seeing her family, joining her rambling group, time with her dog, her hiking, and the occasional horse riding when she could afford the time. But she did not mention her prognosis.  

Nell was thirty-six years old, a doctor training in endocrinology. She had no children, a fact she said she had been thinking about a lot over the past few weeks. She wasn't sure whether not having had children was a regret or a good thing. When I encouraged her to elaborate, she began to say something but soon stopped and would say nothing more. 

Despite what I now remember about Nell, the notes that I made following that first meeting reveal that I had found her 'brittle' to work with. A bit further on I wrote that a few hours after our first session I was at home having a meal with my family, when Nell came into my mind again. It felt like a slight intrusion, as if something was scratching for my attention. So, after we had eaten, I tried to think about how she had provoked this feeling in me. It occurred to me that she had left me feeling slightly wary about her, a faintly anxious feeling, as if I were about to sit a test. I wasn't sure what this was, but I felt that there was something more complicated going on than Nell 'simply' not wanting to die. 

Nell had begun the second session telling me that she was cross that her medical friends had suddenly become so careful around her. She felt that other people were being sulky, when she was supposedly the ill one. She was repeatedly critical and irritated about her friends who she described as distant and quiet. Yet at the same time she indirectly acknowledged that she had told everyone that she didn't want to discuss her illness. 

Whenever Nell described her friends' reactions to her, it always seemed quite plausible that they were just trying to be supportive. She described several incidents in which she appeared to be entirely unaware of the irritation she was showing towards other people. By this point it was clear that she also reacted with disdain to the very few things that I had said since we began. She just wasn't being very nice, and perhaps understandably her friends and I were all feeling a bit wary of her. 

So I was in two minds. Part of me recognised something in what she was saying. People often avoid conversations they fear might find socially awkward, particularly so when a fellow doctor is ill. But I also thought it was more likely that her friends were feeling pushed away and had become careful in view of her irritability and short temper. Her bristling incisive anger often seemed as if she was trying to keep me at bay too, yet here she was again, having returned for a second session, and very much wanting to make sense of it all. 

After a few minutes I tried to summarise and reflect on what she had told me, and concluded that her description made it sound like her friends might be a bit afraid of her, but that perhaps they were also afraid for her? Nell didn't react or say anything, and she quickly moved onto something else, so I followed her path. 

Towards the end of the session she told me that until the past few days she had never really thought much about her life, let alone how long it might be. She reflected that this might seem odd, given that she was so well-educated and a doctor. I can't remember how I responded, but I remember feeling that Nell was already becoming less stuck.

In this third session it seemed that I had passed the test, because I found Nell much more pleasant and engaging to be with. Her sharp edges had melted a bit, and I felt more comfortable being with her. She had worked hard in the interval since our last session, and came with notes about what she had been thinking about. It seemed that she had begun to trust me.  

So, after we discussed her very medically-dominated week and the pain from lymphoedema (swelling) in her arms, I asked her more about her childhood and upbringing. She told me that her parents were poorly educated and had been destitute for most of their lives. They had done all they could to shield the family's poverty from the judgmental eyes of others. One effect of this was that her childhood friends were forbidden from visiting Nell's home, and Nell was discouraged from visiting theirs. School trips were only allowed if they incurred no extra cost, and so on. 

The family became proudly self-sufficient, and Nell and her older brother learned to make do with what they could derive from the family itself. But the family was almost totally isolated and so became inward-looking; safe, but in constant dread of shame as a result of their poverty. Her parents were miserable about their lives and one another, and Nell was anxious to keep the peace, but little was ever spoken about. No one had the vocabulary. No one attempted to speak about their lives together as a family, or suggest anything that might lead to a shared story. It was, in Nell's words, "one long dull blur".

She had somehow found her way out of this impoverished background by attending her local further education college which she loved. She became a nurse, but soon after she qualified she applied to medical school. Her courage and determination had enabled her to rise out of her deprived childhood, and these days it was mainly her loyal girlfriends who kept her going, not her family. And by 'girlfriends' she seemed to be mostly referring to her colleagues. 

The pain of Nell's feelings gradually became clearer as she found the words to describe them. She tearfully said that she had only recently woken up to the fact of being alive, and of only having this one life. She was "only thirty-six years old, for fuck's sake" and now she was being told that she was going to die. Looking bitterly sad, Nell again said she was pleased that she had never had children, but I could see that her eyes were still moist. And then she quickly added that she had never felt more alive, so being dead just wasn't imaginable.  

I think I responded hypothetically, that if this were the case, if her doctors were right and that she was most likely going to die from this disease, anyone in this position might naturally feel angry, sad, and perhaps scared. She stared at me fiercely and frowned, then looked away and lowered her head. By this point I was feeling that we had built up a degree of trust, but at that moment I was feeling worried that I had been too quick, too blunt, and I was regretting my clumsiness. 

But then she quietly said yes, she would feel angry too. And as she said this her body shuddered slightly, as if she were physically repelled by something. She said that she would feel angry at having 'missed out' on a life that she could only now imagine herself living. I wondered what else she might be thinking about, and she responded that she could not accept the idea that her existence could be entirely extinguished at the moment of her death, that all of her thoughts would be annihilated forever. This foreverness, the eternity of non-existence is perhaps unthinkable, but other people had talked about similar concerns. 

Her eyes had welled up again as she spoke. Rather feebly, I wondered if she had ever considered the possibility that death is no more than the oblivion of a deep sleep, an endless time when one is experiencing nothing. Yes, she could see that, but still she could not conceive of her mind, herself, ceasing to exist. As she continued it seemed that she could not let go of the thought of herself being aware of her non-existence. In other words, being alive in some other way. 

Nell was talking as if consciousness could exist beyond the body.  True old-fashioned dualism, perhaps even based on religious ideas of an afterlife, with the mind and soul as somehow separate from the body. But Nell professed to be entirely nonreligious and agnostic. A humanist in fact.

It was twenty minutes into this third session and Nell was talking about her fatal cancer. She said that simply being alive was something she had never seriously thought about. But now she found herself acutely aware of it, and was thinking about it all the time. She was both horrified and regretful at how much she had taken for granted, how much she had missed. This was her one and only life, her one chance, and it was soon to be over. It was clear to me that she was finding it a relief to be talking freely about it all. She admitted she was envious of the people around her whose lives would be going on into the future. She said she wanted to wake them up to tell them how short their lives might be. However, just a few weeks later Nell was able to see that many of the people she knew were probably also learning their own lessons from her illness.  

Over the next few months she talked more deeply about her life. She came to understand that instead of embracing life's possibilities she had been brought up to do the opposite, to hide big parts of herself and what she was feeling. She had been shy about expressing herself and had grown up to become a private person, fearing shame, cool with others, and always a little hard to reach, though she did seem to have close work colleagues who liked her and enjoyed her clever jokes. These and a couple of previous work colleagues were the only friends she appeared to have. 

As a child Nell had felt tested and inadequate, and in our sessions, with very little said by me, she gradually came to realise that her illness had felt like another test, and that she had inadvertently been causing the people around her (including me) to feel these same feelings. For what it is worth, the technical term for this mental strategy is projective identification.

I recorded in my notes some of the metaphors she used in our sessions and in the diary she was keeping that she would occasionally read from. She said she had never previously thought of her life as "having an expiry date" or a "full stop". On one occasion she said she felt that she had only just climbed onto a fairground ride and now she was being told she had to get off. But mostly she felt angry with herself for not having "woken up" earlier to life's possibilities. There was still so much she did not understand about just being alive, and there was "so much left to do and figure out".

In those last few months of her life Nell changed before my eyes, and although her frame diminished and her cheeks lost their colour and fulness, her outrage at the prospect of death intensified. It gave her an energy that seemed to defy her increasing frailty. She became less concerned about her clothes and appearance, she put her financial affairs in order, sought out her family to tell them what they had meant to her, and made peace with her daemons. She was intensely creative, learning to make stained glass, and clay vases that she gave to her friends. She gave me one, and I still have it. 

She lacked close friends and family, but over the months I knew her she steadily became more open to allowing other people to care for her. She told me how cheered she felt by the affection and concern shown by her loyal workmates. Above all, she became more generous in expressing her joy, love and affection, and of course other people responded in kind.

It was clear quite early on that I would not be needing to tell Nell the short parable that I had sometimes found myself recounting to my patients, mostly when I felt that they had prematurely given up on their lives. It goes something like this: 

A man goes to party. When he gets there, instead of taking off his coat and joining in with his friends, he leans against a wall and watches the other people singing, laughing, dancing and generally having a fun time. He becomes increasingly hot and sweaty standing there under his heavy coat. Half-way through the party the host comes up to the man. "George" they say, "why don't you take off your coat? You'd be so much more comfortable." George answers "What's the point? I'll be leaving in a couple of hours' time anyway."

Metaphorical stories are the easy bit of course, and anyway Nell was certainly no George. For her, it was all about shedding her overcoat, and yelling to the world that her life was not over yet, and that for as long as she was still breathing, she was furiously going to get on with what remained of her life. Nell's determination was propelled by an anger and regret at not having understood earlier what her life was all about, because now here she was, trying to make sense of it all, often with me. Her excitement for life was not some form of retreat from reality or denial, but an expression of her personal growth. 

She still didn't particularly want to talk about death and it was sometimes difficult and painful for Nell to talk with me, as she reflected on her life, her experiences, her feelings and her beliefs. As with so many other people I had known, I felt in awe of her courage and moved by the transformation she was going through. She was trying hard to make sense of her life. At one point she stopped, looked up at me with wet eyes, and said "I just don't understand. How did it get to this? What are we all here for? How come I am able to think all this stuff now, but in a few months' time all this will stop? There is so much I don't understand." When I merely nodded in response, she said "You're the psychologist, you tell me!" And then she laughed, letting me off the hook. But good questions, existential questions, psychological questions.

I know that during her last few months I became someone special in her life, rather like a trusted old friend with whom she could think about these hefty questions without feeling judged. Huge scary questions that may sound daunting, but that sometimes lead to interesting and important answers. It is not my job to provide these answers, but rather to help people think about their concerns and understand them better.  

Over the months of seeing Nell, and especially during our last few talks together in the hospice, I was reminded yet again that these questions have long oscillated in the background of my life too. Perhaps they are questions that everyone asks themselves in different ways at one time or another. We are here, alive in the world for this short time, and then we are lost to oblivion again.  How does our experience of being alive come about? How do we create the apparent reality that makes up our moment-to-moment existence, the trains of thought that constitute our everyday mental lives? 

Nell's questions were not entirely new to me. When I began working in oncology twenty-four years earlier there had been almost no clinical psychologists working in cancer in the UK's National Health Service. The oncologists, nurses and radiographers were as unfamiliar with the world of psychology as I was with oncology. 

At first, my medical colleagues would refer people to me because the patient was regarded as 'difficult', or 'they cry every time they attend clinic', or 'they are too frightened to have radiotherapy', or 'the patient is in denial' about their diagnosis. When I came to meet these patients, however, I was unable to see that there was anything unusual about them, other than their lives had been turned upside down by their illness and they were trying to make sense of a lot of new experiences, scary treatments, and a whirlwind of change. And, sure, there were those with long-standing claustrophobia and other pre-existing difficulties, but most people were simply doing their best to make sense of enormous changes and uncertainty. I would have described it as a hard and unfolding personal and family transition, a tear in the fabric of normal. 

However, I soon came to realise that along with the terrible distress I was listening to, I was also frequently moved by people telling me how their priorities had changed since being ill. Some patients even said they were grateful for what they had learned as a result of the illness. They talked about how their lives had actually changed for the better in some ways. 

A practising clinical psychologist needs to be able to develop and draw upon plausible theoretical models for what is going on psychologically in the people they are trying to help. It was obvious that a life-threatening illness like cancer would provoke feelings of loss and anxious uncertainty, and lots of relationship issues. But I wasn't immediately sure how to think about denial. And how was it possible that so many people were gaining something positive from this catastrophic change in their lives? I started recording my thoughts.

The scientific literature available at the time was largely American and written in psychiatric mental health terms. It said that following diagnosis a third of people with cancer would develop a psychiatric disorder. This seemed entirely the wrong terminology to be using, and deeply inappropriate and unhelpful to the people I was seeing and listening to. 

Lacking plausible models of how people in general adjust to change in their lives, let alone adjust to a serious illness like cancer, I soon came to the conclusion that denial was merely a rather helpful short-term defence mechanism, and usually more a problem for the professionals than the patient. And so-called 'denial' was rarely all-or-nothing. 

Over the years, I listened to thousands of stories of people's lives, and the things they discovered that were important to them. They told me how the diagnosis, regardless of the prognosis, had forced them to consider their death, and consequently they learned a lot about their life. Presumably, knowing we have a limited time left makes us more inclined to use it wisely. 

My patients were not only trying to come to terms with their mortality, they were often reporting that their fundamental assumptions about life had shifted as a result of their ongoing illness. It had taken a serious illness to jolt them questioning how they had been living their lives. They had suddenly woken up to the fact that this was their one and only life, and it seemed perfectly natural that they were interested in better understanding it. 

This is also what this book seeks to understand. How do our minds construct the reality of our lives?  How do minds adjust to change? Where do minds sit within the natural world? These perhaps sound like some of the biggest philosophical questions one could wish to ask, but they are also scientific questions, and especially psychological ones. 

It has been said many times that humans are the only species that can contemplate their own death, and while that is extraordinary it can also be hard. For Nell it was a huge struggle to reconcile herself with her mortality. She was overwhelmed with having a great deal to think about, while at the same time her growing understanding was helping her to change and live in a way that she had not known before, a way that better met her needs. 

So it would seem that knowing we are going to die can help us make sense of what it means to be alive, and how we wish to live our lives henceforth. While this may not be an especially original insight, perhaps if we are able to glimpse ourselves on a bigger canvas it can help us live our lives more richly. And perhaps, like Nell, it is better to ask these big questions now, before we find ourselves at the end of our lives.

Possessing a mind seems so ordinary that we more-or-less take it for granted. This is weirdly ironic, because having a mind is one of the most extraordinary things in Nature. Not all brains come with minds. It is in our nature, the essence of what it is like to be a human being, to have a mind with which to think. Only we, Homo sapiens, are able to make any sense of meaning out of our lives, because only our species is able to mentally model the world in the complex and sophisticated ways that we do. 

This is not hubris. Other animals are able to represent the world in interesting and intricate ways, but there is no evidence that they worry about the future or reflect upon the past in the way that Nell was able to do, because they are unable to make complex mental representations of it. Other species get ill and die… or not. Only humans have to suffer psychologically as well. It is the price of having a mind and Nell was paying it. 

What distinguishes humans from every other living creature on this planet is that human minds are able to represent the world in the form of thoughts, abstract assumptions and models. No other species can do what you are doing right now, making sense of these words. Every word is a symbol for something, and only human minds are able to represent and decipher the world using such symbols. 

We only have to listen to two people having a conversation, making strange sounds at one another, noises that represent complicated ideas that mean something to both of them because they share a language. And they can both interpret each other's sound symbols, and thereby receive and understand the ideas being expressed. Thoughts are thereby conveyed from one mind to another. Something as seemingly ordinary as having a conversation is an astonishingly powerful form of social information transmission.  

But that is not our only talent. Only human minds are able to draw conclusions from the past by reflecting on it, and better still they are able to imagine and model the future. Only humans can ponder their experiences and develop new assumptions on the basis of them, and then communicate their thoughts to one another using language. All this, I shall be arguing, enables each of us to construct the reality of our lives and make sense of our existence. At the same time, unlike any other species, this also freights us with moral responsibility.

I tell you the story of Nell's life, and you began to imagine her experiences and the feelings that Nell may have had. You piece together Nell's story, just as I was trying to do when she was talking to me. You try to construct an understanding of her. You may have less information than I had, but you can still conjure up her story in your mind. Perhaps you have an image of her in your mind, or you may even feel something about her. You have created a simple model of Nell in your mind. Without realising it. 

And that of course is exactly what minds are especially good at doing. We construct stories out of what we hear and learn about the world, and from what we directly experience. We join together the bits and dots of what we know into a continuous story that makes sense to us. While listening to Nell, I was working hard to understand her experience so that I could create a plausible narrative in my mind of that experience. My formulation of her distressing situation was subtly changing as she provided me with more information, allowing me to model her thoughts, feelings, and possible options more accurately in my own mind. 

My first job as a therapist is to use my meaning-making, cognitive mind to understand and reflect on the ways that my client's meaning-making, cognitive mind is making sense of what they have experienced or are still experiencing, and how that makes them feel… and also, on some level, how that makes me feel, listening to all this, and what that can tell me about what the client has been through. 

There is a lot going on. 

- Dr James Brennan is one of the UK's leading authorities on the psychological impact of illness. He was Consultant Clinical Psychologist at the Bristol Oncology Centre for over 21 years. Prior to that he worked for 10 years in mental and physical health in London. For many years he was Honorary Senior Lecturer in Palliative Medicine at the University of Bristol. 
Trains of Thought: A Natural History of the Mind is published by Modernity Press.