When they think it's all over but you know it's not

Doctors should consider hard before ending life support, says one coma survivor Should doctors reassess their policy on coma patients? One survivor thinks so
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The Independent Online
DEAR MARK NEWTON

We have never met, yet we share an extraordinary bond. We have both been in comas, experienced what was going on - and heard what was being said - around our beds while apparently dead to the world, and have lived to tell the tale.

Strangely, we were both going through the same experience at precisely the same time, exactly five years ago.

I read your story in the newspapers last week with both horror and recognition. You suffered much more than I. You were in your coma for six months after a diving accident in your early twenties, just after Christmas, 1990.

The doctors said there was no hope for you and were ready to switch off your life-support systems. At the last minute your mother threw herself across your body and begged them to keep you alive. They agreed, and you eventually woke up and began your recovery.

I went into my coma two weeks after you, after a simple operation went wrong, and it only lasted weeks, not months. But, it seems, we share some memories from when we were both, apparently, unconscious.

We both remember hearing broadcast news reports of the Gulf war. We both heard people talking to us, and tried to communicate back. And we both recalled anecdotes told us, and repeated them to amazed relatives when we woke.

You say you were "vaguely puzzled" in your coma by what you felt the nurses doing to you. I felt that, too. I spent much of the time either in total blackness or in a strange, white, humpy world, as if surrounded by rumpled sheets.

I could not see my body, but I could feel myself being pulled around on the bed. Every so often a voice would say "Geoff, we are going to take your blood pressure", and I would feel the tourniquet tightening on my arm. Or a nurse would tell me that she was going to give me an injection, and I would feel the needle going in. It was a bewildering, alien sensation of things being done to me by forces I could not see. If the nurses had not warned me of what they were doing, I think I would have been frightened, not puzzled.

I could also feel my wife, Judy's, hand in mine, our fingers entwined together. I could hear her telling me that I was being brave, that the children were all right, that their schools and my office were being supportive. I could not work out what she was doing in this strange new world, but her presence was enormously reassuring.

I consciously planned, in my "unconsciousness'', how to make contact with her. I got hold of the idea that I could break through if only I could say something to her or open my eyes. On one occasion she was washing me - and I planned to say "Thank you" when she finished. But just as she got to the last leg I heard her say: "Darling, I have got to go and get the children from school," and introduce the nurse who finished the job.

On another occasion, when I was being shaved, I heard a nurse say: "They often open their eyes when we do this," and remember thinking that that would get me into contact. But it never happened.

I remember being told what the doctors thought was wrong with me, and consciously setting out to fight it. I remember receiving a telegram from Prince Charles, and knowing what it said. When I awoke, I could recount in detail a story my wife had told me of how my son's godmother, a vegetarian who had pitched in to help at home, had brought herself to cook a chicken because she felt the family needed it.

I spent much of the time in an extraordinarily vivid dream, into which much of the real world penetrated. All the people who came to visit me wove themselves into it. I must have been able to take in visual information because my surroundings in the intensive care ward, and the view from its window, kept appearing in different contexts, though I had never seen them when conscious.

A great deal of the dream was about being paralysed and voiceless, which is how I was when I woke (I even dreamt that Mrs Thatcher had permanently lost her voice but that, being equally afflicted, I could not get the story out!). This was merciful because it prepared me, saving me from a horrifying shock; in fact I slid almost imperceptibly from the coma into reality and cannot, even now, put my finger on when I actually made the transition.

Did you, Mark, ever know you were near to death? I did, twice, and it was a surprisingly matter-of-fact, almost mundane, experience - not frightening at all. I remember feeling quite ready to die, if needs be, but that death would have to work a great deal harder if it wanted to get me. Each time it was Judy's presence that pulled me through.

On the second occasion I felt I had a choice to live or die, and having chosen life I, strangely, never doubted that I would eventually fully recover, even though I remained in danger for months afterwards. I was left with a sense of certainty that this life is not everything, almost an apprenticeship for something more important that follows.

My wife, like your parents, was told that there was no hope for me, but fortunately nobody ever suggested to her that I should be switched off. So I was fascinated to read that you, like me, find it hard to come to a firm view about other cases and cannot bring yourself to judge families, like the parents of Hillsborough victim, Tony Bland, who decided to let their dear ones go. Circumstances must differ in different cases, and I find myself tremendously reluctant to generalise.

Yet our stories - and yours far more than mine - do give doctors reason to pause. In the wake of publicity about your case, it has been reported that research by the London's Royal Hospital for Neuro-Disability found that nearly a fifth of the patients studied who were thought to be in irreversible comas eventually woke: many, like us, had been aware of what had been going on around them and unable to communicate. It does seem, doesn't it, that a reappraisal is needed?

I do hope we can meet.

Yours, Geoffrey Lean.

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