I received a similar range of responses to a lecture I once gave to people with MS on “life and death in multiple sclerosis”.
I too feel uncomfortable about death. I did not enjoy speaking with my elderly parents about a power-of-attorney. But one way to help make a death good is to talk about it beforehand. My wife knows what I would like for my funeral and I have joked with my daughter about her job as caterer for the party afterwards (Bourbons and custard creams only, “it is what he would have wanted”).
Of course, this is easy for me to say: I am not facing imminent death. Nor do I have significant disability, which is more to the point. Allyson, in the play, chooses death because “I don’t want to die, but I don’t want to live like this”. The woman who loved dancing became the woman who could not leave her house because of immobility from multiple sclerosis.
Over the years, three people have asked me to help them die: two with multiple sclerosis and one with motor neurone disease. They saw themselves become increasingly disabled and dependent on others, and they hated the prospect. Just as I would. I understood. One did take his own life and that still haunts me.
But I did not help them to die, and I would not have supported Allyson’s trip to Dignitas, for three reasons. Firstly, suicide leaves deep wounds in those who are left. For me, the most moving passage in the play was Allyson’s son, crying down the phone to her in Switzerland, “this must stop now”. I wonder how he feels now. Secondly, I worry that legalising assisted suicide will – inadvertently – lead to pressure being felt by vulnerable people who “don’t want to be a burden”. But, most importantly, I want to offer another hope: a hope that life with disability and dependence is worthwhile and valuable, that all life is precious. This is the hope that comes with faith.
After lots of ups and downs, I have come to believe that I am loved by God. This is not dependent on how much I achieve or how independent I am. I hope that my faith will stay strong when I face illness, death and disability, as I have seen in others. It has certainly brought me into a wider family of believers, all ordinary folk held together by an extraordinary God. This family encourages me and supports me. We believe we are all loved by God.
At this time of year, Christians remember the awful betrayal, torture and murder of Jesus; and his magnificent return to life. I do not fully understand what happened all those years ago. But I am sure that, in part, God wanted to share in the pain and despair of people like Allyson; and to show that death is not the end.
It seems that Allyson did not have a faith and I am sorry for that. She did not feel the reassurance and peace of God’s love. I understand that talk of God may seem ridiculous, old-fashioned or fanciful; but for me it is as real as anything I know. And it leaves me praying for life in all its fullness, for everyone, including all the people I meet with multiple sclerosis.
Alasdair Coles is a neurologist who has been researching treatments for multiple sclerosis since 1994. He was part of the Cambridge team that developed alemtuzumab (Campath). He now is working on trials of a remyelinating therapy in multiple sclerosis and immune treatments in people with psychosis. He is also a priest in the Church of England.