Noel’s zest for life is matched only by his love for his wife. So why’s he fighting for the right to die?
He DoeS not want to die. ‘I’d love to live,’ says Noel Conway. ‘There are so many things to live for.’ Yet he knows this will be his final spring, perhaps his final month of life.
He cannot be sure. only that the end, whenever it comes, will be particularly horrible.
Noel, a retired college lecturer, was diagnosed with amyotrophic lateral sclerosis (ALS), a common form of motor neurone disease (MND), in November 2014.
This merciless disease is progressively robbing him of his ability to move. First, it stopped him cycling. Then, it cut short his walks with his wife Carol in the hills that surround their Shropshire cottage.
Soon he became too weak to play the cello, too weak to hold his knife and fork. Now Noel, 67, can’t so much as scratch his head.
His core muscles — once so strong he could turn somersaults in the garden well into his 50s — have wasted so catastrophically that he requires a ventilator 20 hours a day to breathe. In all likelihood, his death will be by suffocation.
‘Something I could do two weeks ago, I can’t do now,’ he says. ‘In the last couple of weeks I’ve had to ask my wife for help when I have an itch.’ He looks across at Carol and shrugs — or shrugs as best he can.
‘even with both hands I can only get up to there.’ He forces his left arm upwards with his right to his ear. It takes a huge effort.
‘If I let nature take its course, I could become entombed in my own body. I have this image of Stephen Hawking (the celebrated physicist and fellow ALS sufferer) in my mind. He’s an amazing, remarkable character, but he’s virtually immobile apart from his eye. I said to my consultant, “I cannot be Stephen Hawking. I cannot accept that.”
‘ I’m not suicidal. I’m not depressed, but why can’t I have the option of ending my life as I choose?’
Seeking an answer, and resolution to this question is how Noel plans to spend what little precious time he has left.
He is fighting to overturn laws that prevent assisted dying in this country. He wants to die peacefully in the country where he was born and has lived his life — not in the Swiss Dignitas clinic, the only legal option available to those with a terminal illness who want to end their life.
Yesterday, he won the right to bring a High Court challenge over the law on assisted dying.
Last month, two judges refused his application for a judicial review of the law, which makes it illegal for anyone to help someone take their own life, but Noel refused to leave it there.
He took his fight to the Court of Appeal, which has agreed to overturn the earlier decision.
He is an extraordinary man. Not once in this lengthy interview does he show an ounce of self-pity, nor complain of feeling exhausted, though he clearly is.
NoeLused to cycle 20 miles a day, climb mountains, play the cello, read poetry and had more friends than most of us could count. Sadly, as his once fit body wastes so his life has become smaller.
He stares out of the window at the gloriously sunny day. Noel is not an overly emotional man, but his eyes are wet with tears.
‘Knowing this is probably my last spring is so intolerably sad.
‘I don’t want to die. I would have liked another 25 years, and could probably have expected another 25. I was diagnosed two months before my 65th birthday. I had a good pension. We live in a lovely part of the country. We were so lucky . . . ’
‘We were so smug,’ Carol says. ‘We used to sit on the patio outside with a glass of wine, watch the sunset and say, “Isn’t this fantastic. We’ve done really well, we’ve got all these lovely things to look forward to.” We were smug because we didn’t know what was around the corner.
‘Sometimes you wake in the middle of the night in a blind panic. I think, “How am I going to manage the end? What’s it going to be like? How am I going to be able to support Noel?’’ ’
Thoughts of the manner of Noel’s dying terrify them. ‘I’ve not rejected the possibility of going to Switzerland, but I’m not ready yet because I’ve still got some quality of life,’ he says.
‘Why should I be pushed into ending my life prematurely because of the fear I won’t be able to make the journey if I don’t? Why can’t I have the option of having medicine in the fridge here? I’d like to get everyone round, say, “I’ve had enough” and have a wake, but I wouldn’t be awake at the end.’
Carol interrupts: ‘It wouldn’t be like that.’
‘Why can’t it be?’ Noel asks. You only need to see the despair on Carol’s face to understand how hard it is for her to contemplate her husband’s death.
They moved in together in 1985 and married in 1993. They have a 25-year-old son, Alex, together, two children from earlier marriages and a grandchild.
This cottage has been their home for 15 years. They renovated it together. Now they share a double bed in the downstairs room where we are sitting and plan the next step in Noel’s campaign.
Carol, who’s 57, and was an occupational therapist assistant before taking an unpaid sabbatical to care for Noel, would move heaven and earth for things to be different. But, as she says, ‘they are not’ so she supports him wholeheartedly. ‘ We’ve shared so much of our lives, the thought of Noel no longer being here is devastating.
‘I’ve thought, “How can this be happening? Why us?” for the past two and a half years,’ she says. ‘We’ve had our ups and downs as most couples do, but Noel is the man I signed up to
be with. He’s the one I love. We developed our love of walking and mountaineering together. When we reached the top we’d sit and hold hands. There was a sense of oneness then. I miss the physical side. I miss the hugs.
‘Now I’m facing the fear of a trip to Switzerland not for a holiday but to say goodbye to the person I love and come back here without him. How can that be right? I don’t want to see Noel suffer. I don’t want to see him fighting for breath or know he’s distressed, but only be able to see that in his eyes.’
She wipes tears from her cheeks and takes a deep breath. ‘That would be awful. He needs to be able to have the choice to end his life even though it’s devastating for me and our family.’
Assisted suicide or assisted dying is, rightly, contentious.
Many of us are uncomfortable with the thought of legally sanctioning taking of a life, but few of us face the certainty of an unbearably cruel death such as Noel’s.
Tony Nicklinson — who suffered from paralysis after a stroke — took his battle for a right to an assisted death to the Supreme Court in 2012, which ultimately dismissed his case. He died six days later, after refusing to eat and contracting pneumonia.
Noel’s case, supported by the UK campaign group Dignity in Dying, is different in that he has a terminal illness and his legal team from law firm Irwin Mitchell has set strict criteria to protect vulnerable people.
They argue that, to request assistance to die, a person must be over 18, terminally ill with six months or less to live, mentally competent and have their decision approved by two medical professionals and a High Court judge.
Noel is a deep-thinking, articulate man who, in his youth, contemplated becoming an Anglican priest. He no longer believes in God or an afterlife.
‘I believe death is nothingness,’ he says. ‘This collection of molecules,’ he gestures towards his wasted body, ‘ceases to exist, I don’t believe there’s a mystical arrangement. ‘There is just nothing. End of my awareness. End of my consciousness. That’s it.’ Doesn’t it frighten him, the thought of this nothingness? And exactly when — should the law change in his lifetime — does he decide to leave this life for that? ‘It’s very difficult knowing where to draw the line in the sand,’ he says with the honesty that defines him. ‘Your attitudes change. I didn’t think I’d cope with not being able to walk, but I have. ‘I can’t use a knife and fork so people have to feed me, but I can just about manage to get my hands around a small glass of wine. ‘I suppose losing the ability to talk would be devastating for me. If that would be a line in the sand, I don’t know. In the first 18 months I was looking at life in terms of what I couldn’t do — what I’d lost. What we’d lost. Now I tend to see what I can do and what quality of life I’ve got.
‘Something that struck me is that, if by some miracle I recovered, I’d enjoy life 150 per cent more than I did before.’
‘We take so much for granted. We’ve always appreciated nature and friends, but there’s a heightened awareness of that for me.’
Noel took the decision to campaign for his right to assisted dying little less than a year ago.
He was in the throes of depression and had been ‘up and down’ since being diagnosed.
‘I was angry for a long time,’ he says. ‘We’d taken our bikes to the Mumbles in South Wales in 2013 when I realised there was something seriously wrong. We were walking across rocks on a beach.
‘Carol wanted to get in the sea and I was looking forward to stretching out with a book. We got to the rocks and I couldn’t lift my leg. It was like being in a diving suit with weight on your feet.
‘That’s when I started to go to the doctor. The tears came when the diagnosis was confirmed a year later. I’d read a lot about my symptoms and feared it was MND but kept saying to myself, “Please don’t let it be MND, please.”
‘The consultant said, “I’ll be straight with you Mr Conway, you’ve got between six months and 12 to 18.” We were stunned.
‘We couldn’t believe what was happening. One or both of us would dissolve into tears. It was the realisation that the future we’d planned and hoped for wasn’t going to happen.’ Noel falls silent. ‘It was the thought of losing the partner you’d been with all those years and facing life on your own,’ says Carol.
TEllINGfamily and friends was ‘very hard because each time all the emotions would well up again and you feel guilty because they’re hurt,’ says Noel.
‘At first, I directed my anger at people who were overweight and unfit. I felt irrationally angry even though I didn’t know them. Why did they have a life and we hadn’t? I was a gymnast at school and seeing the body I associated with who I am deteriorating around me . . . ’ He shakes his head.
For 18 months, Noel pinned his hopes on a breakthrough in his condition, but it proved to be false hope.
‘I realised I was very depressed and began to explore Dignitas,’ he says. ‘I filled in the forms in July. I didn’t want to face the ending I knew I could have. I suppose it’s an attempt to take control.’ Carol is crying again. last month, when two judges refused his application for a judicial review, he was disappointed.
‘I’m going to die and have to come to terms with that, but what I do not accept is being denied the ability to decide the timing and manner of my death. I just haven’t bloody died yet. I’m still living and I love life. I just want to be able to die peacefully when I no longer do.’
Today, he once again has hope of fulfilling his final wish.
Dignity in death Terminally-ill Britons now make up almost a quarter of users of suicide clinics such as Dignitas in Switzerland