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Why there may be life inside the diving bell

New research reveals surprising truths about locked-in syndrome, the condition made famous by 'The Diving Bell and the Butterfly'

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 whilst 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 9 March, 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 Liège, 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."

Professor Laureys said: "I was very surprised by the findings, as many of us would have been. That is the important message – we must be careful not to judge a book by its cover."

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 learnt to derive satisfaction from their inner life. Among the 28 per cent who said they were unhappy, difficulties getting around and restrictions on their social activities were the main sources of their frustration, and might be remedied.

Professor Laureys said: "We should abandon the old dogma that people with locked-in syndrome either die or stay in the condition for years. Many do show motor recovery – it is very limited but it can be very important. If you can utter a word or move a finger it can make a major difference to your life by controlling a wheelchair or operating a computer so you have a window on the world. We should increase our efforts at rehabilitation."

Locked-in lives

Graham Miles

The engineer suffered a stroke while driving home from work in 1993. Aged 49, he was taken to hospital, where doctors found he could not move any part of his body except his eyes. He gradually made an unprecedented recovery and, now aged 66 and a grandfather, is able to walk a few steps and lives independently.

Julia Tavalaro

The 32-year-old New Yorker had a brain haemorrhage in the mid-1960s and for six years was believed to be in a vegetative state with no awareness of her surroundings. In 1972, a relative noticed her trying to smile in response to a joke and doctors were eventually persuaded she was in a "locked-in" state. Communicating with eye blinks, she became a poet and author. She died in 2003.

Erik Ramsey

The 16-year-old was involved in a car accident in Georgia, US in 1999, after which he had a stroke which left him in a locked-in state. He has worked with doctors since to develop a computer operated through implants in his brain which reads the electronic signals produced when he thinks. Their aim is to help Erik to become the first human to have his thoughts converted directly into speech through a computer.