The battle to remove death's sting

Carol Conway turns away from her husband, Noel, with tears in her eyes. "It's hard," says the 57-year-old, her voice breaking. "I'm going to be in the position of losing the person I love, who I've been with for all these years. The father of my child. My bedrock, really. I'm going to lose that person, and it's still difficult now."

Noel, 67, is dying. In 2014, he was diagnosed with terminal motor neurone disease (MND). His disease has progressed to the point where he relies upon a ventilator to breathe, struggles to talk, cannot stand without support and needs 24-hour care.

Noel knows he will not make it to the end of the year, and has spent the last year of his life fighting for the right to choose how he dies. He has launched a legal challenge aimed at changing the UK law on assisted dying so that the terminally ill can decide when and how to end their lives.

"My family and I have come to accept that I will die," he explains. "But what I cannot accept is being forced to die either at the hands of MND, or by taking drastic measures to end my own life. I want to die without suffering and, yes, with a degree of dignity."

The nature of the disease means that, by the time the person is nearing the end of their life, they are physically unable to commit suicide. Noel is frank in explaining that he would now need assistance to take his own life. But he knows that even if the law did change, it would be far too late for him, meaning his only real option is to let MND take its course, which could mean suffocation or choking to death. "What kind of a choice is that?" he asks.

Not all disability campaigners support his case, with some framing it as an attack on disabled rights, and protesters have even attended his case with papier-mâché coffins.

"I found this particularly hurtful," says Noel. "Members of these groups falsely claim to understand what it is like to be me. But they cannot possibly understand - they are not terminally ill. If my condition were stable and I had more time left, I would be content with my current status. I still have some quality of life left, but not for long. I have only months left to live, and I am likely to endure great suffering and a traumatic death.

"My legal challenge is strictly about giving terminally ill, mentally competent people like myself, choice and control at the end of life. It is not about devaluing or endangering the lives of disabled people - and the overwhelming majority of the public, including disabled people, understand this."

Though Noel has a carer and occasionally visits a hospice, it is mainly his wife who takes care of him.

"It can be very isolating. I feel more like an emotional punchbag sometimes," she says.

Noel apologises: "I'm much more civil with the carer than with Carol. It's like trying to teach a relative to drive. You never should try."

The couple are working through the new challenges and adapting. Noel is learning Arabic and French, while writing a book. Carol tries not to think too much about the future.

"We get on with life as much as we can," she says. "I'm focusing on staying strong, emotionally and physically, to support Noel. I have to stay strong for both of us."

- The Daily Telegraph