Living in lifeless body still worth it

Mathieu Amalric in The Diving Bell and the Butterfly. Photo / Supplied

Few ideas are more terrifying than that of being locked inside one's body, fully conscious but unable to communicate with the world beyond.

Now doctors have conducted a remarkable survey which they claim provides the first evidence that, contrary to what most people think, a life can be worth living in a lifeless body.

The survey of 168 people with "locked-in" syndrome, whose main means of communication is through blinking, found most said they were happy. Locked-in syndrome is the condition in which patients are fully conscious but totally paralysed and unable to speak - often following a major stroke or brain injury - leaving them with extremely limited means of communication.

The most famous patient with the syndrome was Jean Dominique Bauby, author of The Diving Bell and the Butterfly, the bestseller published in 1997, later made into a film, which described the life of the former editor-in-chief of Elle magazine after he suffered a stroke in 1995.

Bauby spent 20 days in a coma and when he recovered consciousness was unable to move any part of his body - except his eyes.

Yet he proved it was possible not only to communicate but to joke, flirt, argue, remember and fantasise while locked inside his useless body, using one eye to blink his thoughts to friends and loved ones.

It is estimated it took him 200,000 blinks to write his book, by selecting each letter from a list read out to him by a transcriber.

Bauby died two days after the book was published on March 9, 1997, but not before it had sold 25,000 copies on the first day. It went on to sell millions and, in accordance with his wishes, the proceeds were used to establish the French Association for Locked-In Syndrome, which provides social and financial support to affected families.

Now Professor Steven Laureys, an expert in the syndrome from the neurology department of the University Hospital of Liege, Belgium, has established whether others in a similar situation enjoyed a similar sense of well-being. He sent questionnaires to members of the association, asking how they felt about their plight. Of those who responded (91 out of 168), 72 per cent described themselves as happy and just four said they would have opted for euthanasia if it were available.

Specialists hailed the study, in the online journal BMJ Open, published by the British Medical Journal, as a landmark. Adrian Owen, Professor of cognitive neuroscience at the University of Western Ontario, Canada, said: "This is an extremely important study with a clear message - we cannot, and should not, presume to know what it must be like to be in one of these conditions.

"I think most of us feel that life in a lifeless body would not be a life worth living, but this study demonstrates that this is not always the case. Many patients can find happiness in ways that we simply cannot imagine."

Only one in five of those who responded said they were able to take part in everyday activities and more than half admitted severe restrictions on their ability to lead a normal life. But most had learned to derive satisfaction from their inner life.

Among the 28 per cent who said they were unhappy, difficulties getting around and restrictions on social activities were the main sources of their frustration.

- INDEPENDENT