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| Ali: "Living: The Greatest Adventure There Is" |
The weeks leading up to today's 11th anniversary of Ali's passing into eternal life have been dominated by the attempt to legalise assisted suicide. Ali would have been alarmed by the media's focus on the issue, and dismayed that the assisted suicide bill had a majority at second reading, just last Friday, 29 November.
Ali encapsulated in herself the principle objections to assisted suicide, and how a law would have affected her was part of the recent public discussion. All who knew and loved Ali can only be grateful that there was no law to allow assisted suicide during the 1980s when she longed to die.
If she were still with us Ali would definitely be contributing to the campaign against assisted suicide, and so it seems appropriate to reproduce her own words, written the year before she died and published in the Catholic Medical Quarterly in May 2013.
Why Euthanasia/Assisted Suicide Would Have Robbed Me Of The Best Years Of My Life
I have been involved in campaigns against the legalisation of euthanasia/assisted suicide for more than 25 years. I am disabled, and the population of western countries seem to hold, almost in equal numbers, the views that of course I want to die, and of course I want to live. Both of these are simplistic, and fail to get to grips with the realities and complexities of living with a disability.
I want mainly to discuss in this article why I changed my mind from wanting to die to wanting to live. However, in order to do this, I need to first explain more about my condition, its effects, and the effects of other people in shaping both my life and my views.
I was born with spina bifida and hydrocephalus. I use a wheelchair full time, and a respirator at night. I have suffered a lot of pain throughout my life, and now need increasing doses of morphine to control the pain of trapped nerves, caused by my collapsing spine, but even that doesn’t always alleviate the pain. When the pain is at its worst I can’t move or think or speak.
A few years ago I experienced alarming and very frightening mental symptoms also, which turned out to be due to excessive doses of morphine. I was given a stark choice – take the extra morphine and live with the mental symptoms, or take less morphine, to prevent the mental symptoms, and accept more physical pain. I chose to prefer physical to mental pain. However it is certainly a tough road to cope with unending and severe physical pain, which I am told will inevitably get worse.
During the years 1985 -1995, due to a combination of difficult circumstances both physical and emotional, I lived through the most difficult period of my life. I have already mentioned some of its implications, but the hardest remains to be told..
In 1985 when I was at my lowest ebb ever, I made the decision that I no longer wanted to live. At that time, doctors believed that my life expectancy was very short. Over time, my desire to die became a settled wish and it lasted about ten years. During the first five of those years I attempted suicide several times.
My first “cries for help” included cutting my wrists with whatever sharp implements came to hand, to make them bleed, but not to threaten my life. This, of course, caused yet more physical pain, but seemed in some strange way to alleviate the unbearable mental pain that was with me night and day. My friends went through the house removing sharp objects with which I might possibly hurt myself, and I can clearly remember through the mental haze eating scant meals with a spoon because all the knives had been moved
Despite this, I continued to find ways to hurt myself, and made several very serious suicide attempts. I tried various methods: large overdoses of various drugs and badly slashing my wrists, with an old rusty penknife that had escaped the general removal of sharp objects. I was determined to succeed then, especially on one occasion I particularly remember.
I had taken a large overdose of painkillers and cut my wrists badly with the old rusty penknife. I then drank a whole bottle of Martini, lay down in bed, cuddled my favourite teddy bear and waited to die.
Fortunately for me (at the time I thought most unfortunately) my friend Sue arrived shortly afterwards. She was able to let herself in to my house, found I was losing consciousness and called the emergency services.
I was taken to hospital and treated against my will - the doctors just waited until I lost consciousness and then treated me. If euthanasia/assisted suicide had been legal then in the UK, I would have certainly requested it with no hesitation at all and I would have satisfied all the supposedly “strict criteria” which apply in countries where euthanasia/assisted suicide is legal. If it had meant travelling to the “Dignitas” suicide facility in Switzerland, then I know I would have done that.
If writing a Living Will (called an Advance Decision in the UK) had facilitated my death it would have been an easy thing to write one, and I would have had no difficulty in finding a doctor to verify that I was of sound mind (this now strikes me as incredible, but it is true that doctors in countries where euthanasia/assisted suicide is legal do actually make such judgments), that my life expectancy was appropriately short, and that I really did want to die.
In retrospect I think my overwhelming wish to die at that time was probably due to a combination of feeling that I simply couldn’t bear my life as it was, and could see no hope for the future. My mind was still in turmoil from all the problems and difficulties and nothing seemed to make me “feel better.” I would go to bed every night and hope that I wouldn’t wake up in the morning.
My greatest piece of good fortune was that I had friends who did not share my view that my life had no value. It took them, and particularly Colin, now my caregiver and also my closest friend who has shared both my house and my life for the last 23 years, a very long time to help me just “give life another try.”
Those efforts and another trip to India in 1995, during which I visited a small project for disabled children, helped to turn my life around. Seeing these children I felt motivated to do something for them, so Colin and I subsequently set up a charity for them. The night after leaving the project I said to Colin “Do you know, I think I want to live.” It was the first time I had thought that for over ten years.
In retrospect I realise that had euthanasia or “assisted suicide” been legal when I was so desperate I would have missed what turned out to be the best years of my life. And no one would ever have known that the future held such good times, and that the doctors were wrong in thinking I didn’t have long to live. This is one of the major problems with allowing suffering people the “choice” of an assisted death – it assumes that life could never get any better. Yet mine did, even in spite of continuing and worsening severe pain and suffering.
I wanted to die for over ten years, though my actual attempts to end my life lasted only five years, after which Colin and other friends helped me in every way possible to see a way of facing the future.
Over the years since then, I have taken part in many interviews on TV and radio. I have forgotten all but one of them. That one was on a radio station called Radio Northampton and I remember it for two reasons. First the interviewer was very rude and offensive, and was unwilling to listen to me. Secondly, I was very tired, and spoke badly, not putting over well what I wanted to say.
After the interview I felt very “down” and thought that all the effort had been in vain. Shortly afterwards, however, the programme’s producer phoned me to apologise for what she called the “unacceptable behaviour” of her interviewer. I was slightly placated.
Then less than twenty minutes later she phoned me again. This time she said that she had just had a call from a young man who said his name was John. He had that very day decided to take his own life, but after hearing what I had to say, he had decided that, after all, he would not do so.
This was certainly not due to any merit on my part, as I knew I had spoken very badly. But somehow this desperate young man had heard a message of hope. Somehow my stumbling and inadequate words had been transformed so that John heard something quite different – something that helped him decide to give life another chance. This experience has reoccurred several times since then, though rarely so dramatically.
Often all desperate people, disabled or not, need is to be given hope. What they definitely don’t need is to be told they are right to feel so unhappy and that they would be better off dead. This is simply the equivalent of seeing a person about to jump off a high bridge and giving them a push.
It seems to me that there is a difference I do not understand between the treatment of non-disabled suicidal people, and those who are disabled. The non-disabled suicidal are assumed to be “wrong to want death” and get the benefit of Government and voluntary funded “Suicide Prevention Programmes” in the UK and in other western countries, and great efforts are made to help them change their mind.
On the other hand, all too often disabled people who are suicidal are assumed to be “right to want death” and are given all possible help to achieve their aim of euthanasia/assisted suicide. The dichotomy seems to be based on an assumption that a disabled life is necessarily useless, burdensome (to the disabled person, their families, and/or society) and not worth living, while a non-disabled life is the opposite.
Some years ago I read a booklet by a young British medical doctor, James Casson, who was dying of cancer. He titled his book “Dying: The Greatest Adventure of my Life.” I think there is also a place for a book entitled “Living: The Greatest Adventure There Is.” My life has been full of pain and suffering, true. But it has also been one long adventure, with great highs and great lows. I think my eventual death will also be an adventure – but for now I’m content to wait for that particular adventure to come naturally, in its own time
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