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IMAGINE being totally paralysed but fully conscious; able to see, hear, smell and sense pain, but unable to communicate your sensations to the world. Can you?

The answer is probably no, and yet this is what I tried to do for my novel . I wanted to know if a person who had been diagnosed with so-called locked-in syndrome could ever come to terms with modern medicine’s equivalent of being buried alive. Given a choice between live burial and a painless death, what would they choose?

To me, an able-bodied person, it seems clear: life under those conditions would be no life at all, a recipe for madness. But the members of the French Association of Locked-In Syndrome (ALIS) disagree with me. In a 2002 survey, they rated their mental health as no worse than that of the general population. In other surveys, more than 90 per cent of locked-in people said they were glad to be alive. Most of them rarely or never had suicidal thoughts, and the majority said they would want life-saving treatments if they contracted pneumonia, which is potentially fatal in such a vulnerable group.

You might ask how locked-in people can communicate their feelings. There are various devices available now that allow them to do so. Some convert the slightest muscular twitch, such as eye movement, into words. The more sophisticated ones bypass the muscles and take their cue directly from brain activity. One of these, the Thought Translation Device (TTD), invented by psychologist Niels Birbaumer at the University of Tübingen in Germany, was the model for the fictional device used by my patient in The Quick. Thanks to this technology, these people are no longer strictly locked in. Many have said that the ability to communicate is their raison d’être. Without it, would life be as bearable?

Still, the findings of the ALIS survey haunted me for a long time before I wrote my novel, and they still do. I think they reveal something fundamental about human nature: we are immensely adaptable. We can come to terms with situations others would consider intolerable – an argument, incidentally, made by disability groups who oppose the legalisation of euthanasia. It may be impossible for me to imagine what it is like to be a soul trapped inside an inert body, but if consciousness is what distinguishes us from the beasts, then perhaps this condition, which robs a person of everything except consciousness, can tell us something about what it is to be human.

I don’t want to give the wrong impression. Locked-in patients experience despair, anxiety and depression, and a minority definitely do want to die. One sobering study, based on brain imaging, showed elevated activity in the amygdala of people who had recently entered that state. The amygdala is a brain structure that is involved in emotional responses, and though it’s hard to interpret the feelings of a mute patient, neurologist Steven Laureys at Liège University Hospital in Belgium believes that this hyperactivity reflects the person’s realisation of the terrifying situation they find themselves in. The same hyperactivity is not seen in chronic locked-in patients, suggesting, once again, that people adapt with time.

In The Quick, I pushed those observations to their logical conclusion. What does it mean to adapt? We change throughout our lives, but paralysis requires a much more dramatic, or at least more rapid, adaptation. Perhaps the paralysed person literally becomes someone else. When can they stop adapting? At what point does life in those circumstances become bearable, even enriching? I guessed that it might be when they manoeuvre themselves into a position in which they can make choices, or believe they can.

In 2004 I interviewed Dominique Toussaint, a former Air France steward who had been left paralysed by a basilar artery thrombosis eight years earlier. He retained the ability to move his eyes, and using those eye movements to operate a computer he had conducted a long campaign to be allowed to die. Eventually, after many refusals, he found a doctor who would help him. He was so surprised that he asked his children what he should do. They told him that they wanted their father, invalid or not, and he is still alive today. In the end, Toussaint told me, all he wanted was the choice.

Thanks to the TTD and other devices, we know a lot about the mental worlds of people with locked-in syndrome. A number of them have written their autobiographies. Escape into fantasy, memory and imagination is a recurring theme in these accounts. Julia Tavalaro, who in 1997 wrote Look Up for Yes with Richard Tayson, died six years later, having lived more than half her 68 years in the locked-in state. She left behind her a large body of poetry. In his bestselling book The Diving Bell and the Butterfly, Jean-Dominique Bauby wondered why he now remembered his dreams, when before his accident he would forget them on waking. In 1995 a stroke left him first comatose and later locked in. “Perhaps that is how it is with coma,” he wrote. “Since you never return to reality, your dreams don’t have the luxury of evaporating.”

“Since you never return to reality, your dreams don’t have the luxury of evaporating”

Despite the technology, communication is still a considerable challenge for these people. To operate the TTD requires months of arduous training, and the failure rate is high. Last year, in the journal Neurology, Birbaumer and colleagues described a particularly tragic case of failure (vol 67, p 534). A 46-year-old German woman who had been diagnosed with the degenerative disease amyotrophic lateral sclerosis, also known as motor neuron disease, had made it clear that she desperately wanted to live. By the time she came to Birbaumer’s attention, she had already been locked in for a year. After trying in vain to train her to use the TTD, they decided her chances might improve if they implanted the electrodes in her brain rather than sticking them to her scalp. For this, they needed her consent, which she clearly couldn’t give. Impasse.

Then, walking past an electronics store one day, Birbaumer’s colleague Barbara Wilhelm spotted a medical device for measuring the pH of saliva, and had an idea. They trained the woman to change the acidity of her spit by imagining either the taste of lemon, or the taste of milk. She learned to push the pH one way to say “yes”, the other to say “no”. When they asked her if she agreed to them implanting the electrodes, she replied yes, repeatedly; three hours later, however, she lost control of her salivary pH. The electrodes were implanted, but she hasn’t achieved any control over her brain activity. Birbaumer is still trying to tap into other potential channels of communication, but he fears that after a certain time locked-in patients may lose the capacity to control anything voluntarily.

There is another category of locked-in patient: those who learn to use a communication device, then don’t use it. Several years ago, Birbaumer issued a warning to all those developing this technology, to consider carefully what people would use it for. He realised that, after so long “away”, some patients had become socially isolated, their friends and family having, little by little, abandoned them. If there’s anything worse than seeing someone you love seated beside your hospital bed and not being able to speak to them, perhaps it’s having the power of communication and finding yourself alone. In my fictional world, at least, this is the real nightmare. Would such a life still be worth living? That, I can’t say.