Debbie Purdy: the fight of her life

Just as the train is pulling into Bradford station my mobile goes. It’s Debbie Purdy wanting to know if I am bringing a photographer with me. Her voice sounds unsteady. She says it’s taking the nurses a long time to get her up this morning and she’s not sure if she can get dressed.

I tell her that a photographer is coming but she can always be sent away again. No, says Purdy. She can’t bear the thought of money being wasted on train tickets. She will get dressed.

Half an hour later I am outside a two-up, two-down terraced house clinging to a hillside in Bradford. There is a ramp, and a door that opens automatically to reveal a smiling woman with wild dark hair sitting in a wheelchair, dressed in sweatpants and a light blue cardigan that is the same colour as her eyes.

“Are you any good at popping balloons?” she asks, by way of a greeting. On the kitchen counter are three of them: red, blue and purple, each with “50” written on the side and shrivelled to the size of a grapefruit. “My husband, Omar, was 50 in January,” she explains. I start to say something about how being 50 is perfectly OK, but then bite it back. Not the most sensitive thing to say to a woman for whom reaching her own 50th birthday this summer will be an achievement.

So I gather up the flaccid balloons and start jabbing them with a sweetcorn fork. This is one of the things that you can’t do when you have had MS for 17 years. Another is go on your own to the Dignitas clinic in a grim Swiss suburb, where doctors will administer a lethal dose of barbiturates.

It is for this second reason that Debbie Purdy has spent the past four years fighting for the law to be clarified. Suicide itself has been legal since 1961, but helping someone who is unable to end their own life to die could, in theory, see you locked away for up to 14 years.

She wanted to be sure that her husband would not be arrested on his return from Switzerland, and fought through the courts for clarification. After a number of defeats, in 2009 the House of Lords backed her, and as a result the director of public prosecutions issued guidelines stating that those acting out of mercy will generally not be arrested. Since then, none of the 20 Britons who has travelled to Switzerland each year to die has had to make the grim journey alone.

Two days before we meet, MPs debated assisted suicide for the first time in 40 years. For five hours they thrashed the subject back and forth, giving support to the DPP guidelines, though stopping at any thought of changing the law to make assisting suicide legal in Britain itself.

Purdy propels her wheelchair over the laminated floor to the counter to make tea for us. Her arm shakes as she lifts the light kettle, though she is managing rather better than I am with my tape recorder, which I can’t get to work. She tells me she might have an old one upstairs, though she’s not quite sure where. “It’s probably an awful mess – I haven’t been up there for seven years.”

. . .

Eventually I get the thing going, shift a stack of Guardian newspapers from a chair, sit down and prepare to ask a series of questions about dying.

But she wants to talk about living, instead. In particular, about the shocking win of George Galloway in the Bradford West by-election the previous night.

Even more, she wants to talk about loving, and about Omar Puente, who she met one night in Singapore in the early 1990s when she was still a parachuting, backpacking free spirit and he was playing violin in a band called The Cuban Boys. Omar isn’t here today because he’s performing in Havana. Omar always calls her before he plays. Omar worries about her when he is away. Every time she says his name she smiles.

But then she says: “Cubans have a different attitude to infidelity. I don’t know any who are particularly faithful.”

I’m not quite sure what I’m meant to say to this.

“It doesn’t work for me,” she goes on. “I’m English.” She explains that he has promised to behave and she has promised to trust him.

It would be nice to sit here and talk about romantic love and how it can survive for nearly 20 years across a gap made by culture, language and illness. But I bought my train ticket expressly to discuss death. I ask if she minds having to rehearse the arguments again.

“No,” she says, with a firmness that is almost fierce. “You, as a journalist, are responsible for me being alive.”

This seems a little overgenerous, but what she means is that media attention has helped her case. Had she lost her battle in the House of Lords, she would now be dead.

“In 2009 I had sorted out everything to go to Dignitas. I could still have gone on my own then. I wouldn’t let Omar come. He is black. I would not let him risk prosecution.”

Not only will she not have to go to Switzerland alone, she hopes she won’t have to go at all, that the law will be changed in Britain, and she will be able to have a safe, legal, assisted death here.

“I’m a cock-eyed optimist.” She laughs in a weirdly carefree way, as if she were predicting a barbecue summer.

Pressure is mounting, though possibly not fast enough. In January the Commission on Assisted Dying published a report backed by the think tank Demos and chaired by Lord Falconer. It said the law was “inadequate” and “incoherent”, and recommended that the terminally ill should be allowed to be helped to die under restricted conditions, but only if they could take the fatal dose themselves.

'There is more dignity in being able to choose death than in screaming in agony. That's undignified'

Purdy describes the recommendations – which wouldn’t help her as MS isn’t terminal – as a “no-brainer”. She is campaigning with the charity Dignity in Dying for more radical legislation that would give the choice to die to people who are suffering unbearably.

I say I’m troubled by the name of the charity. Assisted dying might be a good thing, but is it really dignified? “There is more dignity in being able to choose death than screaming in agony. That’s undignified. It’s not like going to the Queen’s garden party. The dignity is about being in control. The thing is you’ve got to understand the stress. You feel unable to get up in the morning if you have no autonomy.”

. . .

About 80 per cent of the country is in favour of a change in the law. (The Inventory in this magazine asks the question every week and a sharp majority of respondents support assisted suicide.) But there is a powerful argument made against it. If assisted suicide were legal the vulnerable could be put under pressure to die from penny-pinching hospitals and unsympathetic relations. David Cameron made such a point before he was elected. The Labour MP Frank Field has talked darkly of “the very nasty side” of people trying to persuade others that the decent thing to do is to end their lives.

Purdy thinks this is hysterical scaremongering of just the sort that was used when the age of consent for gays was raised and people argued that there would be a dirty old man on every corner trying to corrupt young boys.

“I don’t believe that the human race is just waiting for nan to die to inherit her stamp collection. People think there will be millions streaming in to be bumped off, but it’s not like that.”

She says that in Oregon, where assisted dying has been legal for 15 years, the number of people using it is very low. Purdy claims that about 10,000 people discuss the possibility each year with family and friends, and of those, only a tenth then consult their doctors. Of those, a mere 100 are given a prescription, and only three-quarters end up taking it.

What she wants is a procedure that would protect the vulnerable and involve doctors, lawyers and social services as well as friends, relations and religious groups. Death would be one possibility; what she hopes is that by having a discussion about the person’s life, ways could be found to make it better and to prolong it a little.

“We don’t talk about things enough. Refusing to talk about death diminishes life.” When Purdy’s own mother died 20 years ago without having had any such discussion, her children had terrible arguments about the funeral. “We all absolutely believed we knew what mum wanted. We all wanted to do the best, but what was the best?” Two decades later the ashes are still being shunted from one child to another, unscattered.

As a corrective to this, what Purdy does is talk. “I’m a gabby bitch,” she says.

She tells me about the drugs she takes, morphine and codeine, which are reasonably effective at muffling the pain of her acute spasms, but have horrible, painful side effects, including constipation and light-headedness. She talks about how much she hates being in a wheelchair and getting fat. “I have never put on so much weight. It’s awful. My legs are doing an imitation of a chicken drumstick.”

I glance at her legs, which are slender in comparison to many of those I spotted an hour earlier heading out of McDonald’s near Bradford station.

And then she tells me what will happen to her if she goes to Switzerland. “You eat sweets first so the taste isn’t in your mouth, then a relaxant so you don’t gag. Then they give you the drug that will kill you.”

The process holds no fear for her. She is not frightened of dying. “When you’re dead, you’re dead.” What is terrifying is not being able to die, or trying and failing and ending up in an even worse state.

Even so, two things trouble her about making this final, fatal journey.

“One is that I’m an organ donor, and if I go to Switzerland they won’t use my organs. The other is that it’s a foreign country. In England you are surrounded by friends and family and you can leave it to the last minute … Going to Switzerland is such a palaver.”

I wonder if all this brave talk about organs and logistics is a distraction from rage at the unfairness of it all. “Sometimes it makes me angry,” she agrees. “But it doesn’t make me as angry as having a Tory government.” I wonder if she’s joking. She doesn’t appear to be.

She explains that she can accept death better because she has done so much.

“I’ve been parachuting and hang-gliding and scuba-diving. I’ve travelled. America, Norway, Japan, China and the South Seas. I’ve skied, I’ve waterskied. Never had money. But I’ve really enjoyed doing things. So I don’t feel cheated.”

She is quiet for a bit and from the bedroom comes the constant burble of the television.

“You hear that next door? It’s News 24, I have it on all the time. Sometimes I feel really miserable and think why is this happening to me? It’s not fair! It’s not fair! But then I see that a bomb has been dropped on Palestine. Or men are trapped down a mine.”

I point out that this is the same argument that has been vainly deployed by generations of school dinner ladies who tell children who won’t eat their greens to think of the starving millions. It never worked with me. Purdy laughs.

“It didn’t with me when I was a child either. That’s because I was feeling uppity then. But now, lying in bed as a grown up feeling miserable, I can put myself in their situation. In Africa people walk for two hours to get water. And I know that I can transfer by hoist provided by social services at no cost to myself to my electric wheelchair and roll into the kitchen to get clean water from the faucet.”

I ask if she will know when it is time to go. She gestures at the dining table, which is covered in papers. There is another battle she wants to win first – against the benefits system. If Omar does no work at all they get £1,200 a month in benefits. But if he earns £90 a week, their benefits are greatly reduced. Looking at her face as she describes this injustice I see a fire of self-righteousness. I wonder if she enjoys fighting.

“I am loud and articulate. And I get a kick out of arguing. That’s awful. But I do.”

There is a wistful pause, before she goes on to say: “But I would prefer to be jumping out of aeroplanes and travelling around with Omar, listening to him play.”

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