Michael Wenham: 'I don't want the right to die'

Craig Ewert was driven to a Swiss assisted-suicide clinic by his distressing, and terminal, condition. But Michael Wenham, who also suffers from motor neurone disease, is determined to carry on living – and savouring every second

'Reverend Wenham, would you like to sit down?" What is it about the formality of "Reverend" that alerts me to ominous news ahead? This time, we have finally reached the session with the main man: the consultant himself. I have sat down. "My colleagues have done all the tests and, having examined them and seen you today, I'm afraid I agree with their conclusion: that they all point to your having a motor neurone disorder."

This was the big one. I knew about David Niven. And it was not so long ago that Diane Pretty had been on the television news, pleading through her husband to be put out of her misery: her life which was no life. She had died in the May of that year. I knew, without needing to ask, that there was no cure. It was a death sentence. My mind did not go blank. I don't think I went into denial, more into a curious detachment. This was undoubtedly happening to me. I – yes, I, Michael Wenham – had MND, the dreaded degenerative condition. But the only question I could think to ask was, "How long do you think I've got?" To which I received the predictable, but honest, answer that it was impossible to say. It affected individuals differently, but I seemed to have a more slowly developing type. (Do I mentally cling like a drowning man to the remarkable Professor Stephen Hawking?) There was no surfacing emotion, no protesting that it must be a mistake. Just a matter-of-fact feeling, "Well, that's it, then."

Presumably, Dr Donaghy made the appropriate concluding remarks about writing to the GP and making the next appointment. I honestly do not remember. But I intended no irony when I thanked him. And so we stepped out into the crowded clinic waiting room.

I received my diagnosis of motor neurone disease in 2002. It was not, it transpired, the aggressive form that Craig Ewert suffered from, but a rarer, slower form, which has left me more time than I would have chosen in which to contemplate my own dying. I guess most people would choose to die in their sleep or at least instantaneously. But those of us with terminal conditions know we don't have that option. And most of us can empathise with Craig Ewert not being tired of life, just tired of the disease.

Quite often, people urge me not to give up. I don't intend to. I'm not inclined to surrender. I know that I am comparatively well off in both the form and the stage of my illness. The symbol adopted by the Motor Neurone Disease Association is the thumbs-up sign, because it was the last communication David Niven gave before he died. It is well chosen, in my experience of patients, they possess a similar spirit.

But without minimising the struggle, it is not all frustration. Life is not an increasingly miserable decline. The landscape is not dominated by giants of anger and despair. They lurk nearby. Their shadows fall across your path from time to time, but you do not have to spend your time staring at them. You can enjoy other things on your journey. For one thing, there's the fight itself. It is quite bracing. It is certainly purposeful. If you have taken the decision that you don't intend to cave in, then considerable energy and ingenuity go into surviving.

After the diagnosis, I took some time to latch on to the useful tips shared in the MNDA magazine and on the organisation's website. But you also devise your own stratagems. Early on, when I began to need the banisters for stability, I simply carried books up and down the stairs in a carrier bag hooked over the wrist. I learnt to avoid comfortable armchairs, as they seemed to become lower and lower and more and more difficult to get up from. Some days, I reach the end exhausted but satisfied; I may have been slow and clumsy, but I have achieved more than I expected. It's not been a bad day's work.

Being slowed down and capable of doing progressively less and less can be, and frequently is, frustrating. Yet it can have an astonishing effect. It gives you time to appreciate life, frame by frame.

As adults living in 21st-century Britain, we are invited to measure our value in economic terms. All of us get the message that we are valued for what we do, what we produce, what we contribute to society. Unemployment is the ultimate negation of worth. In The Full Monty, the jobless miners make a great discovery: that they have a dignity, they're worth something, even when they are stripped bare.

Being inexorably rendered incapable is like undergoing an enforced, prolonged and embarrassing striptease. I can contribute less and less. I cannot even help to lay the table for a meal. The astonishing effect, however, is this: as I do less and "just be" more, those nearest me, starting with my family, value me no less. Indeed, since my self-esteem used to depend in part on what I did, I feel that I am valued more. Their affection seems not to depend on my ability to meet their needs or to do anything.

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I once read a vivid description of a sufferer in America lying unable to move or shout for help while ants swarmed up his bed and over his body. By the end, that elusive concept, that universal "right" – quality of life, to all appearances departs completely. The patient is totally dependent on others for everything. He or she has no independent life. They sense that they are only a burden and a nuisance. Surely then is the time to allow them to die.

I am not in any hurry to die. However, I am aware that in the torture chambers of depression, the mind can be so tormented that all light is dark, and death appears preferable to life. That seems to me an unimaginably horrible place to be, far worse than where I am.

I wouldn't want to comment on, far less condemn, the decision taken by Craig and Mary Ewert or by Daniel James, the young paralysed rugby player, to opt for assisted suicide. Attempting to understand any form of suicide is hazardous. No one can pretend to enter the depths of an individual's psyche, when all hope is gone.

But I do agree with the Ewerts that death – such a taboo in this country – is something we need to face and discuss. I do wonder, however, about the motives of the TV programme's promoters in this case; I suspect they are not disinterested. Not that I can escape the same charge, having committed to print as graphic account as possible of the frustrations and indignities of my form of MND, as well as its surprising joys.

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In a discussion of this subject, we must address a raft of connected questions, tied together by a thread of reasonable compassion. Is not euthanasia justified in certain cases? And is physician-assisted suicide not a legitimate option? And what about living wills made earlier, relieving others of hard choices for the terminally ill? Are there not merciful, humane, exceptions to the absolute sanctity of life and to doctors' duty to preserve life? Apparently, the majority of people in the United Kingdom think so. To most of us it seems arrogant and heartless to insist on prolonging another's suffering on a mere matter of principle, when we aren't in their shoes. How dare we?

On 12 May 2006 Lord Joffe introduced the second reading of the Assisted Dying for the Terminally Ill Bill. After hours of high-powered debate, which made surprisingly good reading, it was deferred for six months (in effect defeated) by 148 to 100 votes. During the debate, there were religious and non-religious people taking opposite sides, but those I found most powerful spoke from personal experience, such as those in the medical professions. Lord Winston, for example, said: "Five times in my life I have seen people who are dying who have clearly wanted to die and have expressed that wish repeatedly to me, often over several months. On one occasion, I even filmed that, very controversially, in The Human Body. A man called Herbie in Ireland, who suffered from mesothelioma [a rare form of cancer], clearly said to the camera, 'I want to die; I wish somebody could end my life.' Herbie lasted for almost 20 months after that time, and in the last six months of his life he said, 'I am so pleased that I was not taken at my word.' I have seen that four other times with patients."

That month I expressed my reservations about assisted dying in our local newsletter, and a neighbour took me kindly but severely to task for wanting to impose my views (based on religious convictions, to which he said I had a right, but which he didn't share) on others. He is an engineer. For him, human beings are sophisticated machines, which, when they wear out should be allowed to choose the time of their own shutdown. I could understand the attraction of such freedom of choice. Let me choose when I've had enough. It seems so reasonable; yet it left me uneasy. Paradoxically, I find something subtly selfish about it. No, I need to rephrase that. For all the genuine compassion that undoubtedly motivates those who argue for assisted suicide, I think there is a streak of selfishness whose existence we need to be honest enough to acknowledge and of whose effects we need to beware. That selfishness comes from a number of directions: the state, carers, the patient him or herself. Maybe it is only partially selfish, but let's not pretend it is pure altruism. Where does the self-interest lie?

From the state's point of view, it is primarily economic. It is true that healthcare absorbs a large proportion of the national budget. It is necessary to put limits on such expenditure. In Britain the National Health Service does not have a bottomless purse, and hard choices have to be made as diagnostic techniques and treatments become ever more expensive. The NHS is funded by taxation, which means, ultimately, by the electorate. No political party wants to include increasing taxation in its manifesto; it's a recipe for losing an election. So the pressure to make cuts in (or at least to restrict) healthcare expenditure, without appearing to do so, is strong. The temptation is to go for a soft target, and those who are dying anyway are just that. So are those who are perceived to have a poor quality of life, such as those suffering from mental or physical disabilities.

Prolonging life – especially life requiring constant care – is more expensive than shortening it. Palliative care does not come cheap. To find a politically and fiscally acceptable alternative would come as a great relief to governments. Perhaps if they wait long enough and fail to give a strong lead, public opinion will become sufficiently irresistible and our former ethical scruples will have been washed away. What is sinister is the spin that gives a compassionate face to a utilitarian motivation.

With carers, the issue is rather more personal and complex. There's a difference between professional carers – those whose job it is to care – and wives, husbands, children or whoever it is with a dependent relative, amateurs in the literal sense who do it for love. For them, it is impossible to disentangle the mass of emotions involved. Their lives are devoted to the care of their loved one. Of course, they would not have it any other way. Yet, for all the commitment of both amateurs and professionals, there is immense sadness at seeing the wreckage of a human being sinking inexorably beneath the waves. For one thing, it is a painfully vivid reminder of their own mortality: a living memento mori. But there is also real personal pain in the act of caring. In my experience the most harrowing bereavement is that of a mother for her child: it is the cruel triumph of the unnatural (premature death) over the natural (maternal love).

Almost as harrowing, however, is the helpless witnessing of a loved one's suffering. Even the veiled threat of it is recognised as the most potent weapon of torture ("We know where your family are..."). But for it to go on in reality, day after day, month after month, perhaps for years, is too much to bear. No wonder that often, in the end, the amateur hands over to the professional, with varying degrees of reluctance and relief and, of course, guilt. The patient is placed in residential care "for their own good". That is probably and usually true, but there is also – it would be naive to deny – an element of self-interest in such decisions. The carers feel they can't cope any longer; their quality of life is zilch; their pain has become unbearable. How much of the "mercy", we might ask, in mercy-killing is for the carer and how much for the patient?

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Another important question is this: how on earth can a patient's desire to die with "dignity" be disfigured with the tag "selfish"? (By the way, I find "dignity" a weasel word in this context, as if receiving a lethal injection is in some way more "dignified" than suffering to the bitter end.) Primarily, I feel, the answer lies in what it demands of the carers. It is saying to them: "I want you to put my wishes first. You may want to cling on to hope. You may treasure the time spent with me, but I've had enough of everything: of the pain, of the struggle, of life, of you." It demands probably, too, that they take the decision to pull the plug, to end your life – and the sting is that, even if the decision was yours, not all the responsibility for that goes with you into the grave. The carers survive, as an accessory to the act.

And they are not alone. For doctors and nurses there's a double bind: denying their vocation to save life and compromising their standing as healers. "For me," the patient says, "I want you to break your normal rule of saving life. End mine, because it's not worth living." Although I hate it when I see the wishes of "clients" in nursing homes being cavalierly ignored, the principle at stake is more a matter of respect for another human being than the violation of a right. The staff are transgressing the universal obligation of compassion. Conversely, there is almost an arrogance in demanding one's "rights" or wishes at the expense of other people's needs or integrity. And there's no denying that a dying wish is an exercise of considerable power. I can understand why the continually demanding complainer in a residential home might be discreetly sedated, though I don't think it's justified. Yet to require or allow doctors to administer lethal injections would be to undermine their integrity and position of trust. An ambivalence would enter the doctor-patient relationship. Normally, physicians would do all they could to prolong life, but occasionally they might cut it short. Whether you are asking doctors to make the decision to terminate life or merely to carry it out, that is an intolerable reversal of their whole raison d'être. I would rather allow them to carry out their calling of care, healing and relief of pain than to make an exception for me. The hospice movement has proved that dying need not be undignified. One can go gentle, but not easily, into the good night.

This is an edited extract from 'My Donkey Body' by Michael Wenham, published by Monarch Books

What is motor neurone disease? The facts

Motor neurone disease is a progressive neurodegenerative disorder that attacks the nerves controlling the muscles. The hands tend to be affected first, followed by the muscles in the feet and mouth.

The earliest symptoms are varied and may include increasing clumsiness and slurred speech. But because these have other causes, diagnosis can be difficult and is often delayed. There is no test for MND.

As the disease progresses it leads to weakness and wasting of the muscles, causing increasing loss of movement in the limbs and difficulties with speech, swallowing and, ultimately, breathing.

The effect varies enormously from person to person, as does the speed of progression and the length of survival. Many sufferers die within a few years, but the most famous patient diagnosed with the condition, the physicist and bestselling writer Stephen Hawking, author of 'A Brief History of Time', has survived for decades.

The disease was first identified by French neurologist Jean-Martin Charcot in 1874. Around two people in 100,000 are diagnosed with MND each year, while at any one time there are about seven in 100,000 people living with the disease.

Men are twice as likely to suffer as women and it is commonest in adults over 40, though it can strike at any age. There has been evidence in recent years that the disease is increasing, but this could be due to better diagnosis and the ageing of the population – it is commonest in those aged 50 to 70.

There are four types of MND which each affect people in different ways, though there is overlap between them. The most common form is amyotrophic lateral sclerosis, which is marked by weakness and wasting in the limbs.

Progressive bulbar palsy affects about a quarter of sufferers – symptoms include slurring of speech or difficulty swallowing. Progressive muscular atrophy affects a smaller proportion and may be noticed as weakness or clumsiness in the hands.

Primary lateral sclerosis is the rarest kind, causing mainly weakness in the lower limbs.

The Motor Neurone Disease Association website is at www.mndassociation.org

Jeremy Laurance