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  • Writer's pictureBrian Mountford

Death, Heaven and Motor Neurone Disease

This extract from a recent funeral address struck a chord with an unusally large number of people, so I share it here.

I think I know roughly what Sue thought about what Christians call the ‘Kingdom of God’ as a present reality: namely that God can be made present through love and empathy and kindness and thoughtfulness and by trying to see things from the point of view of others. I’m less sure what she thought about the Kingdom of God as a notion of the eternal. But this is what I would say to her – that while the ethical genius of Christianity is contained in Jesus’ acceptance of the outcast, the disfigured and the despised, its philosophical genius is to see a meaning and purpose to life which transcends (or stretches beyond) the limitedness and frequent misery of human experience; a sense that there is more to life than this, which we find in the poetry of the psalms or beginning of John’s Gospel or parables of Jesus, for example. It’s often been translated into a simple view of heaven, whether by African American slaves dreaming of owning shoes to walk all over God’s heaven, or by lonely people thinking how nice it would be not to have arthritic pain anymore and to have a bit of company over a cup of tea on a permanent basis. And that’s a concrete way of expressing what Sue and I might want to put more abstractly, that God, who is at the heart of being and consciousness itself, transcends our time frame and holds us in something like an infinite memory, so that just as we make present Jesus Christ in the memorial of the Last Supper, the Mass, the Eucharist – whatever you want to call it – and as we make present, for example, the fallen in war by acts of remembrance, so God gives us eternal shape and purpose by holding us in the divine mind. This view of heaven is no good, of course, if what you want is to continue the experience of a consumerist society, but it’s a great reassurance if, like Macbeth, you are frightened that in the end life is a tale told by an idiot signifying nothing.

Sue was amazingly realistic and open about dying. She had suffered poor health all her life but determinedly fought against it; she used to say to her family, ‘I’m often down but not out.’ And it was this humour, resilience and bravery that we all saw in the last months, tapping away on her i-pad, laughing away at her own jokes and the gruesome comicality of her situation, mind active as ever, still telling Peter when he was wrong and fighting her corner in any discussion. A year ago, Peter, Sue and I met to discuss and prepare for this service. You could almost do a PhD on the minutes of that meeting, with Peter’s notes and Sue’s scribbled amendments all over it – a study in marginalia.

We cannot brush under the carpet today the awfulness of what poor old Sue went through during those months and the knowledge of what Motor Neurone Disease does to people and the fear of gradually losing all control of your own body. To have a clear mind, but not to be able to eat a meal, not to be able to speak or swallow or wipe your own face. A living death as she saw it. She felt a justifiable rage and a rage at loss of control. Why shouldn’t we have rights over ourselves and our destiny even when our neural self-determination has been taken from us? Although a poem about age rather than loss of function, it put me in mind of Dylan Thomas’:

Do not go gentle into that good night, Old age should burn and rave at close of day; Rage, rage against the dying of the light.

Mercifully Sue was relieved by pneumonia from a potentially a much worse death. But I’d say she went in good heart nevertheless and in good faith.

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