When I Die

by Philip Gould

  Every single time you try to tell yourself ‘Yeah, but…’ or ‘OK, it’s tough, but…’ or ‘OK, it’s difficult, but maybe…’ that is a lie. And that lie will stop you living properly, and it will stop you having a good death.

  Whenever I start to deviate from acceptance and start to think, ‘Yeah, OK, maybe…’ or if I hear someone saying it, even someone I love, I say: ‘Look, your dad is going to die, your husband is going to die… There is no alternative to this, it is going to happen.’

  At that moment you gain freedom. You gain power. You gain courage.

  That is what I think about the nature of death. I know that people deal with death in different ways. If people wish to use denial, then fair enough. That is their decision. However, denial is not for me at all.

  And I am absolutely sure from my understanding of life, my understanding of death, my understanding of all there is to do with these complex issues, that you have to be honest and you have to be true to yourself and you have to accept.

  When you reach that place where you have been told – and you believe – that you are going to die within a certain amount of time: that is the Death Zone.

  If you know you are dying but say: ‘Well, I’m not in the Death Zone because it is not yet certain’ – in other words, that it is not certain you are going to die yet, that it might be in a year, or two – then you are in denial.

  This is just a way of saying: ‘Actually, I’m in the Death Zone… but I’m not in the Death Zone.’ That will not work. You have to accept the fact, accept that you are going to die.

  If you accept that, then progress is possible. And not just progress, which we will talk about later, but all manner of things are possible. But you have to accept that you are about to die.

  I absolutely feel that the moment I accepted death and looked it in the eye and faced it, then I had – not defeated death, you cannot defeat death – freed myself from death. I think I have shown myself that I have the courage to be able to transcend death. Maybe I cannot beat death, but death cannot beat me.

  The key is to look death squarely in the eye without blinking. I know that sounds arrogant, but I believe it to be true.

  My wife and I went to see a vicar about my funeral arrangements. We were so nervous we were all over the place. We did not know what we were doing. But as the hour passed, calmness came, and we realised we were not frightened of death any more. We were facing death by looking it in the eye, and that gave us freedom.

  Earlier this week, I had a couple of really tough nights. My breathing was bad, my digestive system was bad, my diarrhoea was bad, my coughing was bad. Everything was bad. Gail was in a bad state too.

  I just lay there and thought: ‘OK, this is bad. But this is death, and as long as I look death in the eye and as long as I accept it, I can choose – to an extent at least – the kind of death that I want. I have some freedom, I have some power here. I have the possibility to shape for myself my own death.’

  At that moment I had a sense of freedom, and every time I experience that I am free of death, for a moment at least.

  Fear of death is crucial to our understanding, but this idea of facing it square on is a core one for me, probably the core one, and it is the one that works best for me.

  Entering the Death Zone provided a process through which, step by step, I became able to cope with the reality of dying.

  I had always expected, ever since my first diagnosis of cancer four or so years ago, that I would be able to cope with it to some extent. Then, when I had my first chemotherapy, I was terrified. In a way, chemotherapy is a symbolic, iconic representation of cancer. It comes with these tubes, these side effects, these horrible things that seem so awful to contemplate as happening to you.

  Before it started I thought: I simply cannot do this. I cannot do chemotherapy. It is too painful. It is too horrible.

  But you do it.

  Then the people treating you say: ‘By the way, mate, you are not going to have an oesophagus, you’re not going to have any of this or that or here or there, and you will never eat normally ever again.’

  And you get used to that.

  Then you realise – whatever they throw at you, you can deal with it.

  And that is because your body and your mind have an extraordinary capacity to deal with what is going to come later. It is just an amazing thing. You learn how to cope with these challenges, one after another. There is more in the human body than you will ever understand, more physically, more emotionally, more spiritually, more religiously, even. The body can cope. You can cope. You can do it. You can deal with the pain, you can deal with the discomfort, you can deal with the uncertainty, you can deal with it all. It is possible to deal with it all.

  Realising that changes you as a person.

  Then there is the matter of courage.

  You think: God, I’m scared, I’m a coward.

  I thought I was a coward. I was the kind of guy who was frightened to go too fast on a bike in the evening. Too frightened to go on the big rides at Alton Towers, or do any of the scary swimming stuff, or even to duck my head under water. I just did not have the courage to do these things.

  But when cancer came, bringing with it a great deal of fear and pain, I found I could deal with it. Time and time again I found the courage to deal with this acute and terrible pain.

  The pain was and is bad. It is slow and mundane, day after day after day of pain, feeling sick, vomiting. Endless, endless, endless pain. But you get to be able to endure it. However horrible it is, cancer prepares you for what comes next. It prepared me. It braced me too for the fact that it might return; and when it did return, it prepared me to understand that it might come back in a much worse form.

  It prepared me for all that, and then it tested me again. It said, actually, this is going to come back, and frankly it may come back in part because of human error. I am not, by the way, saying that necessarily happened. But nonetheless human error was a factor.

  You have to live with that huge thing too. You live with the possibility that human error caused this.

  So you are dealing all the time with a vast number of things. Fear. Uncertainty. Pain. And what I have found is that, as it goes on, you get stronger and stronger and stronger and freer and freer and freer. All the way through my cancer journey, my body and my mind have been able to cope with the next stage. Cancer prepares you to take the next step, even as you are completing the one before. In the end you lose your fear of the next step because you know you will be able to take it.

  We all have to endure pain, but it gets in the way. Some believe that through pain you gain enlightenment. My experience has been quite prosaic. If I feel pain I stop. My creativity falls away. I really do not like pain.

  I would be one week on chemo and one week off, and the week when I was not undergoing chemo was the creative week for me. In the non-chemo week I was able to write and do things.

  The more pain can be got rid of, the better. What you need in the Death Zone are as many good quality days as you can possibly have, with your friends and with your relatives and with your books, or whatever it is you want. Get rid of pain as best you can. I really do not care how you do it.

  I try to get rid of pain straight away myself. It does not help me in my creativity, it does not help me with my self-expression, it does not help me build relationships. Even when the kids talk to me they cannot have a proper conversation if I am in pain.

  What’s the point of pain if it does not do me any good?

  The only thing I ever really gained from pain came when I was suffering the most acute form of it in my entire life. I had just undergone the surgery in Newcastle. It hurt so badly that I remember thinking: God, I understand now what it is like to have pain.

  And I found myself wanting to say to the world, I feel your pain and understand the pain you are feeling. I wanted to send an empathetic message to everyone.

  When I had my second recurrence, the medical staff said: ‘Look,
let’s be honest, you’ve got seven lymph nodes full of cancer, it’s not good.’

  When I asked the doctor what my chances were, he looked down and shuffled his papers a bit, and I knew then that the game was probably up. I did not know what to do. I had no sense of purpose. I was lost.

  But I found a purpose. To begin with, it was just to find what it was in this new stage of life that would give me meaning. In other words, finding a purpose became my purpose.

  Then came that terrible Friday morning when the hospital rang to say: ‘Now you’ve gone through the 5 per cent tumour marker up to the 58 per cent marker.’

  It was all over – completely and clearly.

  I was not going to make it unless I was very lucky. No, I was not going to make it. That is what I mean by being honest. Fuck it. You must be honest.

  Gail and I went to one absolutely bleak late-night session where the hospital staff were checking the scans. They were wonderful people but what they had to say was in effect: ‘Look, you’ve got cancer all over the place, and you know it is going to kill you. It is going to kill you in three months, four months or five months, but it is going to kill you.’ There was no question about it at all and I knew that. It was kind of like being hit by a roller-coaster, it was so hard.

  Georgia, quoting Leonard Cohen, always says there is a crack in everything, that’s how the light gets in. There was no crack here. This was pure darkness and death. Whenever I tried to move the conversation on, the doctor kept saying: ‘You are going to die and that is that.’

  Gail and I just looked at each other and started to cry. I cried endlessly for hours, I was so sad. We knew this was it and we knew there was no escape, and so we cried.

  A day later we bounced back. We moved to a different place and a different time. It was a totally transcendent moment. I saw now that the purpose I had been seeking was to give as much love as I could. Even though I was dying I knew that was what I had to do. It was clear, there was absolutely no ambivalence about it. I was dying, I had to make the most of that and my purpose was explicit. And so my death became my life.

  And my life gained a kind of intensity that it had never had before. It gained a quality and a power that it had never had before.

  I have my wife and my children here for me at this moment, because I am defining myself now through death, I’m giving meaning to myself through death. Without that I do not know what I would do. I need family and I need meaning and they converge into the same thing in the end. I do not see how I could get through this without the support of my family. It would be absolutely impossible to do that. I cannot envisage how anyone could do that.

  I rely upon my family enormously, almost completely. I try to lead them. I try to inspire them. I try to show strength. It is me who is dying but me who has to show them a way forward.

  I do not suppose there are many people in the world who know they have fewer than three months to live, who are trying to articulate what it feels like as I am doing now. I do not mean to suggest that only I am articulate enough to say these things, but that this is a unique opportunity for me.

  I want to write and talk about dying. It is important for me to do that. It is an extraordinary experience to know you just have these few months, or weeks, or days and to be able to articulate your feelings about that.

  I want to say something else as well, because this is not a seminar. In six weeks or less, I will be dead. Before then, I will face huge fear. This is the real, unavoidable experience that is coming unstoppably my way.

  The moment you accept the imminence of death, fear disappears – up to a point. The other night, my blood levels had fallen, which is bad. And in general, my tests were not as good as I would have liked, and I felt fear. I felt the future rushing towards me. Time was running out. Maybe soon I would be in a hospice, and once I went there I might not escape.

  I could feel it happening and it is inevitable that you feel fear. You can conquer it, but you cannot, in all honesty, obliterate it, and it is wrong even to suggest that you can. Fear is still there.

  Now what I say every time is, go to the fear, seek it out. Be like a fear-seeking missile. It works, not always but most of the time. Certainly, looking at fear this way is essential. The moment you move towards fear, the closer you move towards the avoidance of fear, the conquering of fear, and the better it is.

  This strategy is paradoxical of course. Obviously it is better to have less fear rather than more, but we are in one big paradox here. It is death that gives intensity to life. All of us know this, all of us living in the Death Zone. I talk to people like myself about this all the time: only through death and the fear of death do you feel this intensity.

  That is the key to it. Intensity comes from knowing you will die and knowing you are dying. This is particularly true when you are given the death sentence, as I was. Suddenly you can go for a walk in the park and have a moment of ecstasy. I go to the Frieze Art Fair in Regent’s Park opposite our house. I go to the exhibition tent and I sit there and have a coffee and I feel ecstasy after ecstasy after ecstasy. This is built upon this feeling of certainty, of knowledge, of death. There is ecstasy because I am not dead yet.

  I mentioned earlier that I had a terrible night recently. It could not really have been much rougher; I was very, very tired and was sick for most of the night. I had to make maybe a dozen trips to the loo and was feeling generally just dreadful. Gail stayed with me as I struggled.

  In the morning she came in to see me and by this time I did not look good. Gail just gave me this smile of tenderness that was almost beyond words it was so wonderful. The tenderness she showed me was beyond anything I could ever have expected. It was extraordinary. I felt security. I felt, finally, I am safe at home.

  I knew then that the tenderness I saw on her face was utterly dependent upon the knowledge that I was going to die, and that I would soon be dead. Without that knowledge of death there would have been no such tenderness, but with it, such tenderness was possible. Death is immensely cruel but also immensely powerful.

  I am enjoying my death. There is no question I am having the most fulfilling time of my life. I am having in many ways the most enjoyable time of my life. I am having these moments of ecstasy. I am having the closest relationships with all of my family. This is the most intense time of my life.

  Why should all enjoyment stop the moment someone tells you that you are going to die? Of course it does not stop. Death has many components. You do feel sadness. I am leaving my children and my wife. Georgia has said to me: ‘Dad, I want you to be there when I get married, when I first have a child.’ Grace has said similar things.

  What I want to say to my daughters is that this is the most exciting and extraordinary journey of my life. My only regret is that it will end, and end soon. I would like to be on this journey with you for ever and a day. I want to be with you all the time. I know that it is not possible, but I wish profoundly that it was. Your own journeys lie ahead of you and you will take what I have started and turn it into something much more magnificent, much more extraordinary.

  Death can leave you feeling incomplete and it is sad. But it is also the process of transformation and change and excitement. It is beyond my moral or philosophical understanding to say which sides of this experience are most important. I just do not know.

  But I do know this. I have had more moments of happiness in the last five months than in the last five years. I have had more moments of private ecstasy than for a very long time. I feel at peace with the world.

  So there are moments of intense enjoyment. The great balance in the Death Zone rests between the pain and the gain. Without doubt, for me the gain has been greater than the pain.

  The opportunity, the possibility, the chance of fulfilment makes this the most extraordinary and important time of your life. Can you enjoy it? Yes, you can. Should you enjoy it? Well, if you can, yes!

  I feel well equipped for this last stage largely because of the help I have been given.
Death sounds so frightening, but so did cancer. So did chemotherapy. So did surgery. All these things are frightening and all of these things are tough.

  But at the end we have it within ourselves to cope with them.

  I was absolutely sure when I was diagnosed with cancer that I wanted – I took an instinctive decision – to share this experience with the world, and I thought I had to do it. I was absolutely determined to communicate in some way to the world what had happened, and I wanted to do it and I did it.

  There is a misconception in the way that death is projected and communicated. I would not say that black becomes white or white becomes black but there is definitely a misconception.

  Changing that is my purpose now. I am attempting to transform perceptions of death rather as I tried to transform perceptions of politics. I want to lead people to understand that what they are told about death is not necessarily the reality.

  Life is a dialectical process. It is not linear. One moves forward dialectically. You follow a path, learn from that, and you change. You take another path. Learn from that. And so on.

  I worked in advertising, which I loved. I then did politics, which I absolutely loved. After many more changes I entered the world of cancer, which is a very powerful world and one that I hope I have helped people understand better with my writing about it. Now I have entered the world of death: the Death Zone. And my impression is that people want to know about that too.

  Now, am I going too far? Have I crossed barriers? I think that probably I might have done. I have not been as sensitive as I should to the needs of Gail, Georgia and Grace, let alone those of my wider family. I was determined to press ahead, to do this.

  I think it is fair to say I have not been anywhere near attentive enough to the people I love during this period. I was determined to use this sense of purpose to drive us forward, but it is a legitimate complaint that certain lines in the sand have been crossed. I decided that I would cross those lines. I decided that I would go further than might be wise, and I know that other people might disagree with what I did.