Message from locked-in patients: ‘we’re happy’

Telepathy: The NIRS/EEG brain-computer interface system is worn by a model. © Wyss Centre

Imagine you could see and hear the world around you, but not interact with it — not even by blinking. Would you be happy? Amazingly, new ‘mind-reading’ technology says the answer is ‘yes’.

‘My mind takes flight like a butterfly,’ said Jean-Dominique Bauby in 1997. ‘There is so much to do. You can wander off in space or in time, set out for Tierra del Fuego or for King Midas’s court.’

In reality, he was in a hospital room in France, dictating his memoirs letter by letter using only his left eyelid. The finished book introduced the world to locked-in syndrome (LIS). It is a condition which leaves patients fully conscious, but unable to move or speak. Those with ‘complete’ LIS cannot even blink.

For most able-bodied people, the idea is terrifying; a living nightmare. But yesterday doctors in Switzerland published a study suggesting otherwise. They used a groundbreaking new device to read the brain signals of four patients with complete LIS. By presenting them with hundreds of yes or no statements (such as ‘the capital of Germany is Paris’) the doctors learned to recognise the brain activity for yes and no. Once they got enough correct answers, they moved on to more personal questions.

One woman asked her father if he gave his blessing for her marriage. (He said no; she got married anyway.) But when it came to the most fundamental question of all — are you happy? — all four patients said yes.

‘We were initially surprised,’ said Niels Birbaumer, the neuroscientist who led the research. But perhaps they had found a way to focus on the good social interactions around them, or experience something like meditation. ‘We find that they see life in a more positive way.’

Of course, a sample of four patients is not enough to assume that everyone with LIS is happy. These four were all being cared for at home by their families, so they were predisposed to be happier than others.

But a separate survey in 2011 had similar results. And Birbaumer’s theory chimes with the descriptions of life in Bauby’s memoir. Although his body was trapped, his mind roamed free. ‘Small gusts of happiness’ took on new poignancy. ‘I cultivate the art of simmering memories,’ he explained.

All in the mind

Great news for the patients and their families — but I could never learn to be happy in that situation, say many. So much of life comes from the freedom to make our own choices, express our feelings and ideas, and communicate with the people around us. It is impossible to imagine being content to watch the world, but not live in it.

Don’t be so sure, respond others. No one can know how they will react to such an extreme situation. After all, happiness is a state of mind. As long as your mind is healthy, you can be happy; just as lots of physically healthy people are unhappy. Perhaps they should learn from those with LIS — savouring the little things can transform your life.

You Decide

  1. Do you think you could learn to be happy if you had LIS?
  2. Where does happiness come from: the outside world, or within?

Activities

  1. Write down five yes or no questions you would like to ask someone with LIS. Swap with a partner and discuss what you think their answers might be.
  2. Write a short story from the perspective of someone with LIS.

Some People Say...

“Happiness is a choice.”

What do you think?

Q & A

I’m glad these people are happy, but how does this affect me?
Locked-in syndrome is quite rare, and hopefully you will never have to experience it. But the question of how to be happy is universal. This study suggests that it comes from a place within, rather than external factors like money or successful careers — something that is echoed in Ancient Buddhist teachings, as well as modern studies of mindfulness.
What else could the technology be used for?
Currently the doctors cannot distinguish any more detailed language than yes and no, but even these two words are helping the patients with practical matters in day-to-day life. Scientists hope that it can also be used to communicate with patients who have other types of brain injuries, including those who are thought to be unresponsive.

Word Watch

Tierra del Fuego
A group of islands at the southern tip of South America, shared by Chile and Argentina.
King Midas
In Greek mythology he was given the gift or curse that everything he touched would be turned to gold.
Finished book
Bauby edited French Elle magazine before his stroke in 1995. The Diving Bell and the Butterfly was published in March 1997 (Laffont); he died two days later. The book went on to be a bestseller.
Locked-in syndrome
The condition is usually a symptom of a stroke or Amyotrophic lateral sclerosis (ALS) — the degenerative disease which afflicts Stephen Hawking.
Switzerland
The study was published this week in the journal PLOS Biology.
Brain signals
Different types of brain activity change the oxygen levels in the blood; this changes its colour. The cap used a technique called near-infrared spectroscopy to allow doctors to see these changes in colour, and determine which meant yes or no.
Survey
According to New Scientist, 72% of people with LIS said they were happy. ‘Many rated their quality of life as higher than I would have done,’ said the lead researcher.

Subjects