Still meaning in life, says man with locked-in syndrome

A man who has locked-in syndrome says it’s possible to “find meaning” despite being in a “shell of a body”.

He wants to shift the focus of the assisted suicide debate and create a world where people like him feel encouraged to live.

Stuart Hepburn, 61, has the same condition as Tony Nicklinson, who lost his right-to-die case in the High Court last year.


Mr Hepburn, from Edinburgh, suffered a brain-stem stroke eight years ago which left him paralysed and unable to communicate, but fully conscious and able to think.

At first, medical professionals were unaware that Mr Hepburn could hear and understand everything that was going on around him.

The only way he could communicate was through blinking – his wife would recite the alphabet and Mr Hepburn blinked at the correct letter.


After a course of physiotherapy, he was able to regain some movement in his right arm, allowing him to type words on a keyboard.

He now wants to help others with the same condition.

Mr Hepburn said: “If you find yourself in a shell of a body, it’s still possible to find some meaning if you want it”.


He wants to change the current direction of the assisted suicide debate which is taking place in the media.

The high profile case of Tony Nicklinson is the only knowledge many people have of locked-in syndrome.

He said: “I think I was close to resigning myself to death without too much regret.”


“But people seemed to ignore that the challenge for society and religious institutions is to manufacture an environment that people like Tony want to be part of.”

“If we created a world which they wanted to be a part of, then they would not want to leave it behind.”