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Blog - Nick Lewis

It has escaped my mind

Watercolour painting of a cat sitting underneatha chair in the garden

1996 Cat at Margaret and Bob’s, Victoria Park, Perth. Image © Nick Lewis

Some time ago I made an Advance Directive; what some people call a Living Will. It read: “If I am unable to recognise my family, then I no longer wish to live.” The next phrase seems to me now to be on the grim side. “I wish to be transported to the Swiss Dignitas Clinic where voluntarily and legally I can be assisted to kill yself.” In other words, to commit suicide.

What seems tortuous about the process, given that by that time I would, according to the directive, be extremely confused, is the negotiation of travel by ship, plane, or even car to an alien clinic, where I would find entirely strange people telling me what to do. But this is what the exigiencies of the UK law apparently require.

For now I will leave this strange method of ending one’s life. What perplexes me is the question of the point at which I say to my friends and family something like: “Okay, I’ve had enough of this! Now is the time to pack my bags for Switzerland/take those tablets you will find in the top drawer (you can open them up and dissolve the contents in water if you like)/escort me to the top of the multi-storey car park and push me off/ etc etc. Goodbye: tell the rest of my family and tell my friends that I love them and that I hope I have enhanced their lives a tiny bit, goodbye. I don’t want anybody to mourn over my dead body. That’s gruesome. If they would like to have a party to celebrate my life, I have left instructions in the manner of Desert Island discs for some music (including of course the Rolling Stones and Bob Dylan) to play at the event. Just look at the End of Life folder on my computer. ”

Before I go – a cup of tea, And possibly a luxury of some kind: how about a Bath bun? “Dare I eat a peach?”. Perhaps, before I jump, I’ll have time for some memories: maybe nice memories; playing tennis with my dad on our court with those encroaching weeds; helping my mother to pick juicy raspberries; walking past my breast-revealing girlfriend’s open door — did she mean to leave it open? I must have imagined the possibility a thousand times; together with my friends producing Gestetner leaflets for an early 1960s student demonstration; still interested in breasts, falling in love with a fellow radical but sophisticated student; playing hide and seek with our children at Roche Abbey; holidays with the family at Brittany campsites; getting to know miners at Rossington colliery; finding mature girlfriends; sketching – looking – discovering – learning; the beauty of the city of Glasgow; then spending years and years with an even more mature girlfriend, the lovely young Australian woman, Tio, having a boy with her; I am still devoted to them both … those are just some of the glances which might come to mind.

To return to my Living Will. I think you might by now have worked out the problem that I face. My brain is gradually getting addled. I can’t predict at what point I will become unable to recognise my nearest and dearest, and so it will be impossible to tell them that this is the point at which I would like to turn out the lights permanently.

Of course I could delegate the decision to Tio. But how unfair it would be to give her the totally unfamiliar task of making the decision whether to end someone’s life. I think we both have had to ask the vet to “put to sleep” a cat or a dog whose life had become unbearable for either itself or for its owner. But ending a human life, let alone that of a loved one! I suppose it will be an easier decision if other people are involved in it.

I imagine the task of actually carrying out the act of killing could be a relief, but would nevertheless be very sad if not agonising. I suppose it would be possible to involve my doctor, who is aware of the Advance Directive and has seen the deterioration of my condition over the years. But I think it would be illegal for him to kill someone. He would probably not want to do it.

Is there some other way of arranging my death? Actually, I’ve got that box of Xxxxxxxxxx. The contents could be dissolved in a special mug of water, of which I could train myself to recognise the significance — a special mug for the big sleep. Like most things in life, and death I suppose, we can’t be sure of the outcome. But I think I might be on the right track.

I have thought several times of sacrificing myself in a blaze of glory to some worthy cause, for instance, the assassination of a dictator such as Assad of Syria. Despite the undoubted sacrifices and discomforts undergone by the International Brigade of fighters against Gen Franco who had seized power in Spain in 1936, I don’t think that such a Brigade will accept me, a wheelchair user, as a member. The same goes for any guerilla band that I might select. I definitely don’t want to throw myself on the railway track, from a high building, or in front of a bus. What a mess. Not a suitable memory for my friends and relations.

One problem: I think I might be afraid of dying! Each day I watch the dawn, as it shows me the beauty of even the little things like the rubbish bins lined up outside my window, or the buds and berries, branches and leaves as they form through the seasons. I like to remember meeting Tio and our son, Lewis. But anew each day? That is what dementia wouldl be like. A sense of wonder. But I think I need to be able to make sense of my world, and I have got the feeling that life would be meaningless without the ability to do that. I’m scared of a fever-strewn life of confusion

I think I know about that kind of confusion. At one point when living in south London, and we had a visiting babysitter, I persuaded Tio that we should do something different: “Let’s go out for lunch. We could go to that restaurant on the South Bank that we liked the look of”. So we got in the car. “You know the way from here, Nick, don’t you?” I assured Tio I did. Then I set us off in completely the wrong direction. Somehow I had remembered the way to somewhere else. When we realised, we were both upset and I felt humiliated. The lunchtime outing was abandoned.

We now live in an Oxfordshire village, around which I roll in my power chair. I know the streets just as well as anyone who has lived here for 10 years or so, as I have. Yet even here I sometimes confuse myself and end up on the road to nowhere. I mention the fever, because I occasionally contract a virus and then literally don’t know where I am. But that passes.

Tio did not want to know about my Advance Directive when first I emailed it to her. But just now, with increasing signs of my memory lapses I decided to talk to her about it again. This was after my doctor, Dr. Whittaker had called on a routine appointment, and suddenly pulled out a form which he said was a routine policy once patients reach the age of 70.

I agreed in essence that one of those Do Not Resuscitate notices should be placed in my notes if I ended up seriously ill in hospital. She said “but what about what happened before? When you had pneumonia and you had a fever in which you thought you were back playing rugby against Eton or some other school?” I remember. I was in a high dependency unit and could not contain my bowels, but feverishly tried to conceal it from the nurses. That’s one of their jobs isn’t it, to clean people up? “I suppose I might automatically resuscitate, and then the least they could do is bring me a cup of tea and a sandwich”, I said.

And what about my children? They’re no longer children, and two of them have children of their own. The eldest, a very grown-up man now, I remember, sat on his dying grandmother’s hospital bed and cheered us all up by joking with her and the nurses about the cuts in the NHS budget. My daughter, Zoe, absorbs every experience and writes about it. Maybe one day I will feature in one of her plays: “The Living Will”?.

As for my younger son, Lewis. Not sure — he knows I’m ill and I suppose he must have realised that I might die, but he is a teenager. He might blame himself. As absurd as that is, I had better talk to him.

For now I suppose the answer is to keep calm and carry on. But I hate the idea of that confusion; suppose it is complete confusion? Maybe I will still have enough marbles to recognise an End of Life Mug? Even one with some marbles painted on it?

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Nick Lewis

Suicide? Disabled peoples organisations are mostly against it. But it is up to the individual, I think. And it should not be a crime for loved ones, may be with the okay of a trusted friend, to assist, if it became necessary.