Interview: Debbie Purdy, MS sufferer

The white front door is more gleaming than the rest, and opens with an electronic click, as if we've jumped suddenly from Hovis advert to James Bond movie. Disconcerting. Past the open door, a woman in a wheelchair becomes visible. Her face is instantly fascinating. Such animation. A nose that wrinkles with explosions of humour. A mobile, expressive mouth. Blue-grey eyes that suddenly light up like Christmas trees. It would be hard to find a more 'alive' face than this woman's.

It's the irony of Purdy. The multiple sclerosis sufferer is associated with the right to die campaign but displays a vitality that epitomises the best of living. Last year, she successfully challenged the 1961 law on assisted suicide in the House of Lords. The Scottish Parliament is currently considering a bill to legalise assisted suicide but such moves have been resisted in England. Attempting suicide is not illegal, but helping someone to take their own life is. A blind eye has often been turned to those assisting the terminally ill, but Purdy wanted concrete clarification. Her victory resulted in the director of public prosecutions in England and Wales laying out the conditions under which prosecution would and would not be likely to happen. In Scotland the Lord Advocate has declined to do the same.

The new guidelines make Purdy confident that her husband, musician Omar Puente, would not be prosecuted if he helped her travel to the Dignitas clinic in Switzerland, where patients are helped to die. MS is not terminal, but it is progressively debilitating. Purdy had argued that, without legal clarification, she would have to terminate her life prematurely when she could still travel unaided.

More than 100 people have travelled to Dignitas from Britain without any prosecutions. So was this part of the intellectual argument – and a bit of emotional blackmail – rather than the reality of Purdy's situation? Absolutely not, she insists. There is no guarantee about prosecution. The only person ever charged, though the case was dropped, had a Polish surname. "That was a worry." Puente is not white and middle-class. He's black and Cuban. "In 2008 I joined Dignitas because I was losing the ability to travel by myself, and that was terrifying. If we hadn't won in the House of Lords, I'm not sure I would have got to the European Court, which would have been the next stage, because I probably would have gone to Dignitas. I thought I was losing physical ability more quickly than has actually been the case. And that would have been a terrible mistake."

Purdy has become synonymous with an issue. We know what she stands for but not who she is. Now, she has written a book, It's Not Because I Want to Die. The title sums her up. "I don't think anyone should be in favour of assisted dying. But neither should they be against it. It's not the right choice for everybody, but it should be a choice to explore." It's an important distinction. To understand Purdy's attitude to dying, you first have to grasp her attitude to living.

Before diagnosis, Purdy's life was characterised by a refusal to be tied down. Ironic that she ended up trapped in a wheelchair when she was such a butterfly spirit. She parachuted from planes one minute and did voluntary work with the disabled the next. She worked in sales in Scotland, as a music journalist and adventure holiday brochure writer in Singapore and took in America and Norway en route. In Singapore, she met Puente, the leader of a band called the Cuban Boys. Puente didn't speak English but she understood his character from his violin playing. She saw discipline and humour and compassion, all qualities he would come to need. Just weeks after they met, Purdy returned to England for a neurological appointment. She'd had some troubling symptoms: weakness in her legs, excruciating headaches, and at first suspected a brain tumour. Her MS diagnosis terrified her. "I didn't know how it would progress. Nobody knew for certain what would happen." She was 33.

Both her parents were dead. One of five children, her unusual family life had perhaps developed her adventurous spirit. Her mother was a nurturing, maternal woman while her father, an inventor, was a 'let's change the world' nutty professor. Their different attitudes simply clashed. "They were so nice individually and poison together." Her father worked abroad but it was years before Purdy discovered that her parents had really separated. But now, neither was here. She rang Puente. "Come back to Singapore," he told her.

Music spirals down the stairs. "Omar," Purdy says, pointing upwards with a grin. As a musician, he travels a lot, just got back at two this morning. Heavy footsteps on the stairs. A tall, imposing figure appears. He's on his way out to teach. "Look, a woman," Purdy grins. "Someone for you to charm." She lifts her head for him to kiss her goodbye. Her face seems luminous. "With or without?" he teases. "Disgusting!" she laughs. She often mocks Puente's Latin flirtatiousness. But does ill health make her fear losing him? "To be honest, no," she says. "Our relationship is not what I can do for him or what he can do for me. It's different."

Our society is highly sexualised. Nudity in newspapers, prostitution cards in phone boxes, sex line adverts on television. Yet a contradictory prudishness underlies supposed openness. Sex is for the young and beautiful. Mention the elderly or the disabled and people suddenly get squeamish. Even when Purdy's house was having disabled conversions, a motorised single bed was suggested. Why would she want that? She was married. Somehow, this story is at the heart of Purdy. Her body may be disabled; her mind isn't.

She hesitates, then lifts the edge of her jumper to show her supra-pubic catheter. She is truly evangelical about this. It is compact, discreet, completely unfrightening. "I turned down catheters for years because I thought they would be urethral and affect sex. I didn't know what to do with that. But this goes into your belly, into your bladder, and that's it. That's all it is."

This morning, someone called to wax her eyebrows. Nurses help with personal care. That enables her relationship with Puente to be more normal. Sometimes, there is pressure on partners to undertake caring functions because people assume it's preferable to having strangers tending to personal needs. "But I want to be Omar's wife, not his patient. It's really important that women who lose some of their health and independence keep a sense of themselves as women. I didn't marry a doctor or nurse or carer."

When you ask about the dynamics of their relationship, Purdy says something unusual and interesting about her Latin husband. "I think it is really important that he comes from a socialist culture. They have a saying in Cuba: we share what we have, not what we have left over. I love that. Most disabled people learn to rely on others. We learn to see ourselves as part of a community. I have problems with the hill outside, especially during snow, but neighbours made sure it was gritted. They don't make a big thing of it. It just gets done. And our relationship is a bit like that. We don't debate it, define it… It just is." She used to complain that Puente didn't articulate his love for her. Then she realised he simply helped quietly when she needed him. He was there.

After their 1998 wedding, she underwent IVF treatment. With the misguided certainty of youth, Purdy had been sterilised before her diagnosis. An attempted reversal had failed. She became pregnant with IVF but suffered a miscarriage. Several failed attempts later, she gave up because her physical condition was deteriorating. How would motherhood have changed her life? "I think if I had children there would be more reason to put up with pain and problems. But he's a really good reason to do that anyway." She refers to Puente constantly as he or him: simply the presence. "I love him. But it's a massive regret because he would have been a fantastic dad. I wouldn't have wanted to be a parent with anyone else."

Regrets do not consume her. MS has forced her to constantly reassess limits. "I never thought I would want to live in a wheelchair. I always thought, 'If I can't jump out of aeroplanes, play tennis, run marathons, life wouldn't be worth living.' I was wrong. That isn't what defines me." There are so many compensations to her life. "There's him," she says. "But also, as a society we rush around, striving for every job that pays an extra 50 quid. We're so busy doing things that we don't really see each other much. The view from four feet gives you a different angle. You see something different because people are actually nice and caring. In general, they want to help you."

Sometimes, Purdy goes to bed and cries. She doesn't always cope. But she didn't challenge the law because she felt constant despair. "People keep saying 'right to die' campaigner. It's more a right to live."

HOSE AT THE EYE of an emotional storm deserve to be listened to for their unique insight. But are the most buffeted the best placed to manage the maelstrom? The mother of murdered toddler Jamie Bulger, for example, deserves a voice but not the right to determine society's judicial system for children. Similarly, few would want to deny Debbie Purdy the right to control her life and death. But her personal case is not the only issue. That's why the law does not, cannot, move quickly.

Purdy argues that assisted suicide legislation would save lives. "At the moment, there are people with diseases like MS, motor neurone disease, Parkinson's and Huntingdon's who commit suicide because they can't face what the future may hold. If they knew they could ask for assistance when they needed to, it would give them peace of mind." In Oregon, she argues, assisted suicide laws have existed since 1997, and less than half of the lethal prescriptions (around 100 a year) are used. "One of the problems with MS is losing control of your body, your ability to eat, your bladder and bowel. For some people, who have no control in their lives, being able to control that can be a reason to go on living."

She supports the 'tribunals' proposed by author Terry Pratchett, an Alzheimer's sufferer, which would ensure suicide applications were assessed individually. "A change in the law isn't going to mean, 'Oh yeah, we can kill people off.' It's going to be a framework where we can offer proper support and help, whether it's spiritual guidance, medical intervention or social intervention." But surely interventions should be made without people having to say they're suicidal? What of people who are temporarily depressed? Or who feel guilty about their families? Or worse, are persuaded to die by others for gain? Purdy says it is simply not her experience of life that people would do that. But we can't build laws on individual experiences. We have to build on collective knowledge.

Purdy acknowledges that people change their minds. She did about being sterilised. But suicide tribunals would ensure robust questioning. While no opposing argument convinces her, the most worrying for her is that people might die because they feel they're a burden. Has she ever felt that? "I'm far too arrogant," she laughs. "I think Omar is pretty lucky."

But perhaps legislators are reluctant to address this issue because assisted suicide represents more than attitudes to dying. It's what it says about living, about society, that people fear more. Arguments are not simplistically polarised between religious and secular views, as is sometimes suggested. The idea that life is a gift from God is not universally accepted, even by those who believe in God. Man constantly intervenes in life and death decisions – with blood transfusions and operations – without relying on God's will. But in any case, reverence for life is certainly not exclusive to believers. Atheists, too, worry about society's attitudes becoming increasingly casual.

Purdy argues that such "slippery slope" arguments are red herrings. Society controls how far legislation goes, and the countries that currently have assisted suicide laws – like Switzerland, Holland and parts of the US – haven't encountered the horrors people here seem to fear. Why, she argues, do we have so little faith in human nature?

This, many reformers argue, is about dignity and choice. But should the word 'dignity' be hijacked by only one side? The first time Purdy lost control of her bowels, she was understandably distraught. Puente laughed. Initially she thought him cruel. He could laugh or cry, he told her. Which would she prefer? Afterwards, she saw dignity differently. So isn't there a danger that "dignity in dying" implies that those who struggle for every breath and step, who are incontinent and dependent, are somehow undignified? A dangerous assumption. That struggle, the triumph of spirit over body, can capture the essence of human resilience, and the dignity is in the defiance and the endurance.

One choice is not superior to another, Purdy counters. It's not having choice that is undignified. She cites journalist Polly Toynbee, who described her mother's pleas for help to die. "That has haunted her," says Purdy. But any daughter who helped her mother die, would surely also be haunted? Agreed, says Purdy. "Something like a third of the people who are involved in helping someone commit suicide go on to attempt suicide themselves, and a third have mental health issues." That's terrifying, isn't it? Yes, she says, but it's because there is no support for people. They are made to feel like criminals. "To be investigated by the police in itself screws with your brain."

Psychologically, there's surely more to it than that. When Puente was in the room, he certainly engaged with Purdy but seemed detached from the political issues. What pressure is he under? "With the legal situation, I wouldn't want Omar to go and buy heroin and inject me, because I think that would be unbearable for him. Omar doesn't know how he feels about me having an assisted death." She laughs. "Although he occasionally offers to buy me a ticket to Switzerland! I think he just wants me to be strong, independent and love my life. He thinks his job is to ensure I never make that choice, but he doesn't think the state has the right to deny me it."

Purdy is frustrated by resistance. But if the law does change, it will surely be right that deliberation has been rigorous. Does she believe that she will have a natural death or choose the moment? "I don't know. I want to be around long enough that they find a cure for MS."

This optimism defines her. "I don't want to die, and that's why it was really important to me to take the case. I want to live and I want to see how far it can be before it becomes unbearable. Not because it is an experiment – but because I love my life."

It's Not Because I Want to Die, by Debbie Purdy (HarperTrue, 7.99), is published on Thursday

This Article was first published in Scotland on Sunday, March 28, 2010