‘I realised I wanted to live’: Mother paralysed by sudden illness speaks out against assisted dying
MPs will debate and likely vote on the Assisted Dying Bill on Friday
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Your support makes all the difference.As a theatre manager and a performing arts teacher, life for Nikki Kenward has always been about movement. The idea of being denied such freedom would have simply made life not worth living - or so she thought.
But when a sudden illness paralysed her, leaving her conscious but unable to move any of her body apart from one eye, she found her answer was very different.
“What I discovered in those dark moments was the will to live,” Ms Kenward, who is now 71 and in a wheelchair, explained. “It was burning so hard in me. I knew I didn’t want to die. I was just thinking: ‘I want to live. I don’t care how bad it’s going to be, I will survive this’.”
Ms Kenward was a young mother, aged 36, when she went to hospital with a flu-like illness. Just a day later it had progressed to Guillain-Barre syndrome, a rare neurological disorder that occurs when the body’s immune system attacks its nerves.
She would be in intensive care for four-and-a-half months and in hospital for almost a year. She began speaking in a whisper after five months, and had to be fed through a tube for several months more. It would be two years until she could pick up a cup of tea.
Speaking about her time in hospital, she said: “The pain was absolutely excruciating. They had to keep turning me over and it would take six people to turn me. When you use the power of your muscles, you can’t bear to be touched. Every time they touched me it was agony.”
“I began picking up cups of tea after about two years. The idea was that I would walk again. I tried for about four years to walk but I’ve never been able to. But I’ve gone from nothing to being able to talk, but my hands haven’t fully recovered and my legs didn’t recover.”
“I was a very busy drama therapist in a psychiatric unit. I had my own business. If those years ago euthanasia had been legal, I probably would have said ‘I’d rather die’”, Ms Kenward added. “Say I’d signed an advance directive and gone into hospital with Guillain-Barre syndrome... I couldn’t do anything, I couldn’t speak, I could only blink with one eye. My family would be gathered around and, if they were asked ‘what were her wishes?’, I think they would have said she wants to die.”
Her husband Merv, 60, explained: “What happened to Nikki was a very sudden thing, she went from being completely ok to being paralysed. She was such a mobile person that it might not have seemed strange to think she wouldn’t have wanted to live after this.”
Yet Ms Kenward’s realisation in those moments that she wanted to fight for life has led her to become a campaigner against assisted dying. Her work has become all the more relevant now UK parliamentarians will take the issue to a vote, potentially paving the way for the practice to become legal.
Labour MP Kim Leadbeater has sponsored a bill that would allow assisted dying for terminally ill adults. Under the bill, terminally ill adults with a prognosis of six months or less could seek assistance to end their life, provided two doctors and a High Court judge confirm their decision.
What does that say about my life? People have told me directly that they would rather be dead than be in my position. It’s amazing how frank people can be
MPs will debate the issue for the first time on 29 November. While proponents of the bill say that it will allow people at the end of their lives to have a say in how they die, opponents have warned of a “slippery slope” if the legislation is made law.
Other countries – such as Canada, the Netherlands, Belgium and the US – have expanded the accessibility of assisted dying after initial legislation permitting it was passed.
However, Ms Leadbeater has insisted that her bill is just about terminally ill adults, saying: “I get a bit worried there’s a panic and potentially some scaremongering about people having to do this. No one has to do anything.”
But Ms Kenward is not convinced and is worried that the bill lacks sufficient safeguards. She pointed to the controversial Liverpool Care Pathway, a palliative care plan that was abolished in 2013 after families reported their loved ones being drugged and deprived of fluids in their last weeks of life.
Her husband Merv is also worried about how the assisted dying bill would impact people’s views of disability. “When people talk to Nikki now they assume she must be for assisted dying, because the general perception is that if you have a significant disability you won’t want to be here.”
Ms Kenward, who is from Shropshire, added: “What does that say about my life? People have told me directly that they would rather be dead than be in my position. It’s amazing how frank people can be.”
Referring to Tony Nicklinson, a man who was paralysed from the neck down who fought for the right to legally end his life, Ms Kenward said: “I get that. I know what it’s like to be in that much agony. I only need to leave the house to be confronted with how difficult life can be for disabled people. There are so many places where we are not wanted.”
Disability campaigners, such as charity Disability Rights UK, have come out against the assisted dying bill, with chief executive Kamran Mallick saying: “Giving us dignified and equitable lives should come before putting in place ways of assisting us to die”.
The debate will heat up in the coming days ahead of the expected parliamentary vote on Friday. The Labour cabinet are split over the issue and ministers have been criticised for speaking out publicly with their concerns.
Labour peer Lord Falconer, who backs the bill, has suggested that the justice secretary’s concerns about the bill were “motivated by religious belief”.
Rachael Maskell, the MP for York Central and a devout Christian, said Lord Falconer’s claim that Shabana Mahmood was trying to “impose” her Muslim beliefs on those in favour of assisted dying was “hugely offensive and discriminatory” and urged him to apologise.
Prime minister Sir Keir Starmer has chosen not to reveal how he will vote but health secretary Wes Streeting has said he will oppose it.
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