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There's much not to like about living with multiple sclerosis. It's an unwelcome house guest in the victim's body, which refuses ever to leave, and makes more and more insistent and inconvenient demands. Because it affects the nervous system, and because the nervous system controls all our actions and senses, the disease can gatecrash any need or pleasure.
Any function that healthy people take for granted can be scrambled, or disconnected, at whim. And there's another unlikeable thing about it.
Whenever the subject of assisted suicide, or euthanasia, is splashed in the press, it is usually connected with someone with MS, or else its even more vicious mate, motor neurone disease. Most recently an orgy of opinionating has been prompted by the case of Debbie Purdy, who won a long legal battle to clarify whether her husband would be prosecuted if he helped her to die.
These debates must be had, but for those with MS, or their families, they paint the condition in a too-deep shade of black. By focusing on the subject of suicide, they imply that the illness creates a state of such unremitting ghastliness that its victims think of nothing but bringing about their end.
The role of their partners, the suggestion runs, is nothing but to decide when to book the easyJet flights to Zurich. It doesn't brighten up your breakfast to see these thoughts projected at you from the front pages.
It is as if all sufferers were taking part in the gloomiest Ingmar Bergman film ever made, all the time. The truth is, as the MS Society has been at pains to point out these last few days, that most people live with MS for decades. They lead lives, raise families, travel, have friends.
My wife Lizzie was diagnosed with MS 14 years ago, having had mild symptoms that went unrecognised for some years before that. She has moved in this time from the relapsing-remitting version of the disease, where bad episodes are followed by less bad ones, to the secondary progressive kind, where symptoms tend to get gradually worse. She now has great difficulty walking, among other things, and loses several hours of each day to deep fatigue. Things like getting dressed are becoming a struggle.
In other words, it sucks. It would be unimaginably preferable if the illness were not there. But in this time she and I have brought up our two daughters (one born before the diagnosis, one after) from babies to secondary school. We have had the joys, stresses and mundanities of family life, much like other people. We have social lives, and have taken carbon-reckless holidays on four continents.
MS didn't stop her going to see Almodóvar and Penélope Cruz at Somerset House last week, or going to stay with a friend in Los Angeles two weeks before that.
The presence of a serious disease does not, as Hollywood would have you believe, make life a delirious and endless rollercoaster of ecstasy and despair. We are quite normal, albeit cushioned, as some are not, by the comforts of middle-class life. Nor do we pass our weekends leafing through Dignitas brochures. Lizzie has no intention of taking their magic potion soon, or ever. This, selfishly, is a relief, as I don't fancy the trip either.
A disease like MS heightens, in both victims and people close to them, awareness of frailty and mortality, but it does not make them fundamentally different from healthier people.
Every-one faces the likelihood that our end won't be particularly nice and might be sooner than we would like. And the healthy may chose to end their own lives, for whatever reason, just as those with disabling illnesses may choose not to.
And this is the point at the centre of the debates that Debbie Purdy's case has raised: that serious illness does not mean you have one foot outside the human race. This is Purdy's own point, and the reason why she expressed paradoxical joy that the Law Lords' decision would make it easier for her to kill herself.
She has not gone to extraordinary lengths to fight her case because she definitely wants to commit suicide, but she wants the same freedom to choose that is available to the able-bodied.
Opponents of assisted suicide portray it as a slither on the slippery slope towards euthanasia, and the Nazis' practice of gassing sufferers of disabling illnesses, which they started doing before they did the same to Jews and gipsies. In fact, assisted suicide and euthanasia are opposites. One supports the humanity of people with serious illness, the other denies it.
One gives freedom, the other removes it. The vast majority of people with conditions like MS do not and will not kill themselves but their decision should be theirs alone. Opponents of assisted suicide speak smoothly of palliative care and of people like Stephen Hawking who achieve wonders despite their condition. These observations are patronising to sufferers: it is up to them to judge what they are facing, and whether or not they want to relieve their plight by being astrophysicists of genius.
There are indeed some of the dangers that opponents point out. The Purdy case could, but must not, encourage the view that ill people should spare the NHS a few bob and shuffle off this mortal coil. There could be a risk that some people feel pressured to do so, although due processes of counselling and interview could guard against this. Nor would, or should, the easing of assisted suicide be of any relevance to people who are unable to make decisions for themselves. But the basic point is that if power over our own life is a right, it should be available to all.
Debbie Purdy is an exceptional and heroic woman. She has faced some gruesome questions with clarity and strength of will. She has fought hard to establish a crucial point, which is that the law should be clear whether her husband would be at risk of long-term imprisonment if he helped her carry out her wishes. In making a stand for sanity, she has done us all a favour.
Reader views (3)
Thank you. An excellent feature on MS and at long last laying to rest the nonsense about MS being a terminal illness. I have had MS for 27 years. I am 69. I walk (slowly with a stick) and drive using hand-controls. I use weekly HBOT (Hyperbaric Oxygen Treatment) which is shown to slow down the progression. Also daily Yoga leg-stretching exercises which help to combat the MS symptoms. I have not used any drug therapy. I am in the process of applying to do an MA at the University of Sussex. I otherwise spend a lot of time on the Internet promoting and encouraging HBOT.
Christopher
- Christo[Pher Fox-Walker, Eastbourne, East Sussex, England
Well put Rowan. There has been a lot of noise around this issue but your points are elegant and balanced.
Judy
- Judy Slater, London UK
I wanted to congratulate Rowan Moore on his cogently argued case for assisted suicide. I have long believed that the possibility that one could choose one's time and method of dying would in itself contribute greatly to the quality of that individual's life. That decision should rest only with the individual concerned. Only they know the challenges each day brings, and if and when they have reached the tipping point at which life becomes untenable.
Surely we could guard against possible abuses by having an expert panel of perhaps a medic, a social worker and a lay person which could evaluate each case on it's merits.
It was Britain who pioneered the hospice movement. Now let's find a way to do Assisted suicudes well too.
- Maggie O'Connor, Stock, Essex
