Locked-in sufferer: I will not give up on life

A father of three has revealed how he has never wanted to end his life despite being severely paralysed by a stroke 21 years ago.

Kevin Weller has been unable to move or speak since he suffered the devastating stroke at the age of 32, but still says he feels happy.

And despite the difficulties he faces because of his condition, known as ‘locked-in syndrome’, Mr Weller is adamant that he will not give up on life.


In an interview with The Guardian newspaper Mr Weller, who has been married for 35 years and has seven grandchildren, said that he had “always believed that if there’s life, there’s hope.”

He added: “I know that some people who have been locked-in have asked not to be resuscitated if their heart stops, or have elected for euthanasia. But if that had been me, look at how much I would have missed.

“I have a sense of humour, and although I cannot laugh or move any other muscles in my face, I can smile – which is rare for someone with locked-in syndrome.


“I do feel happy, and I will not give up. I have never once considered suicide or needed antidepressants. I wish to remain here as long as possible.

“No doubt there. There’s so much going on, so much to look forward to. I think you can either cry your way through life or laugh, and in the end, I guess you do what you believe is right.”

Mr Weller also revealed how, after the stroke, doctors were initially unaware that he was conscious.


He said: “When I flashed my eyes the doctors thought I was fitting and gave me more sedatives. Back then they didn’t know much about locked-in syndrome and they assumed I was braindead.

“It was my wife who eventually spotted the recognition in my eyes and persevered – showing me flashcards with simple words. She realised that, though I couldn’t speak or move, I was fully conscious and aware of everything.”

Mr Weller is able to communicate with other people by using an alphabet board, blinking his eyes to spell out words.

Earlier this year a survey revealed that the majority of patients suffering from locked-in syndrome were happy and did not want to die.


The survey showed that the longer sufferers have the condition, the more likely they are to report happiness.

The survey, which was published online last month by the British Medical Journal Open, questioned 168 members of the French Association for Locked-in Syndrome.

The survey contained a range of questions including such things as satisfaction with personal relationships, anxiety, pain and social activities.


Of the 65 people whose responses formed the basis of the survey, 47 – almost three quarters – said they were happy.

And only four said they wished for euthanasia, while most had never had thoughts of suicide.

The assumption that locked-in syndrome sufferers can never recover has recently been challenged.


Graham Miles, who felt he had been “left to die” by medical staff, was suffering from the condition after having a massive stroke.

Last summer, however, he amazed doctors by recovering from the illness, which had left him completely paralysed from head to toe.

The resilient 66-year-old is now able to walk and talk and has even taken up motor racing as a hobby.


In August 2010, a mother of two revealed how she never lost her will to live after an illness left her paralysed and unable to speak for 18 months.

Kerry Pink was left suffering from locked-in syndrome by an undiagnosed neurological illness when she was just 35.

Writing in the Daily Mail, she said: “My memories are blurred. But some things remain absolutely certain. I know that however dark the twilight world I inhabited, I never lost my will to live.”


She spoke of the terrifying moment she heard her doctors advising her husband that she wouldn’t make it through.

“I remember a flash of abject terror, then anger”, she said. “I clearly recall thinking: ‘How dare they say I’m not going to pull through.'”

Mrs Pink is now able to walk a few steps and has recovered all of her speech. And, with the help of her family or a carer, she is able to socialise and visit shops and restaurants.

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