Locked-In Syndrome
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 not, and yet with great hubris that’s what I’ve tried to do in my new novel, The Quick.
I was to curious to know if a person who had been diagnosed with so-called locked-in syndrome, who found themselves imprisoned in their own bodies, could ever come to terms with modern medicine’s equivalent of being buried alive. Given a choice between life in those straitened circumstances and a painless death, what would they choose?
To me, an able-bodied person with the use of all my faculties, the answer seems obvious. But the members of the French Association of Locked-In Syndrome (ALIS) disagree with me. When surveyed a couple of years ago, only four out of 300 of them said they would opt for euthanasia. The rest desperately wanted to live.
If you’re wondering how those people communicated their choice, the answer is that modern technology made it possible for them. There are various devices already available, that convert the slightest muscular twitch into words, and more sophisticated ones on the way that bypass the muscles, translating thought directly into action. Thanks to this technology, those people aren’t strictly locked in, but they’re as close to it as they can be while still letting us know their thoughts.
The findings of the ALIS survey haunted me for a long time before I sat down to write 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 the most horrific situations. And something else: we cannot imagine what we might feel like in that situation, until we are in it. Perhaps this has been overlooked in the debate over euthanasia and assisted suicide.
I remember hearing a Holocaust survivor saying that she had crossed a line which separated her from the rest of humanity—the ones who had never seen the inside of a concentration camp—and that as long as she lived, she could never go back. Neither could those on the other side of the line ever cross to hers. There are some people’s shoes we just cannot put ourselves into.
Scientists who study locked-in syndrome have told me that there is a pattern in the attitudes of such patients. Those who are paralysed suddenly, due to a stroke or a road accident say, tend to be less accepting of their situation than those whose paralysis has come on gradually, perhaps as the result of a degenerative brain disease.
In my book, I pushed that finding to its 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 you literally become another person. When can you stop adapting? At what point does life in those circumstances become bearable, even enriching? I guess it might be when you maneouvre yourself into a position in which you can still make choices, or you believe you can.
Jean-Dominique Bauby, who wrote The Diving Bell and the Butterfly after a stroke left him locked in, found some measure of equanimity by escaping into his memory and imagination. Perhaps in describing his mental life to us, he was trying to convey the secret that he shared with the majority of the respondents to the ALIS survey. A person who has learned to live in their imagination can, in theory at least, lead a far richer life than those of us who are trapped in reality. In imagination, after all, anything is possible.
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