Paralyzed but happy? The strange implications of Locked In Syndrome (4/27/11)
The Pursuit of Happiness
Enshrined in our history is the universal opportunity for “the pursuit of happiness.” Yet how can you be happy when your brain is fully aware, your body is paralyzed and the only way to communicate is to blink your eyes?
Locked in syndrome has all the accouterments of nightmare, much of which was described by magazine editor Jean Dominique Bauby in his book “The Butterfly and the Diving Bell,” later made into a film. One patient with locked-in syndrome, Briton Rom Houben, was thought to be living in an uncommunicative coma for 23 years before physicians recognized he was fully conscious. (http://news.bbc.co.uk/2/hi/uk_news/magazine/8378262.stm)
Generally the result of brainstem hemorrhage, often in healthy younger people, locked in syndrome patients may struggle with communication long after they have been recognized as mentally aware. Many lie in pain for hours unable to explain the cause to their caregivers.
So how can people in this state describe themselves as happy? A recent French study, published in the British Medical Journal, asked 65 patients with locked in syndrome how they felt. Fully 72% of them said they were “happy.”
Was this a perfect study? None can be, especially with a condition where communication is itself so difficult. Some patients refused to take part, and a majority of those who did eventually experienced partial recovery of motor movement or speech – though much of this recovery was feeble. In general, these people can do practically nothing for themselves, and are dependent on care givers for virtually every action beyond thought.
A Different Definition of Happiness
Some patients with locked in syndrome say only that they prefer to be alive than dead. Many cannot engage the world, but enjoy observing it. Patients talk about watching their children grow up, or the pleasures of being moved from their beds so they can see different scenes of nature. Others cherish the chance to express themselves, though it may take long minutes to create a single word. Yet there remains the question of how the brain creates feeling states in these people.
The Emotional Brain
Many parts of the brain process and transmit what we call emotions – all the expressions of joy, loathing, terror, fear, heartache and wonder of which we are capable. Some people with brainstem infarcts that caused locked in syndrome first experience great emotional lability. They can veer from uncontrollable laughter to sudden despair. Most of the time they are the only ones aware of their emotional changes.
Later on some seem to move into what might be described as a spiritual state. They experience pain, they know that their body hurts, yet they develop a capacity for detachment. They come to live in their heads, and create within an environment with different satisfactions than most of us experience.
Suicide and Locked In Syndrome
Locked in syndrome is the kind of illness that strikes many, including doctors, as a nightmare of purest horror. But that is not how many with locked-in syndrome experience it. People with lives we would not wish to live want very much to survive as long as they can, while others who appear to have societal definitions of “everything” want nothing better than to end it all. This dichotomy has made assessments of assisted suicide highly controversial. In almost every instance where assisted suicide is legally allowed, a careful assessment of mood is required – or literally fatal mistakes may be made.
Locked in syndrome also tells us a lot about brain flexibility and plasticity. People in locked in syndrome are still learning all the time. As people become more and more used to electronic media, we need to recognize that wholly different brain experiences may soon be available at our multimedia fingertips.
Will we prefer artificial life experiences to the real ones? What happens when we have much fuller capacity to artificially control the sensations inside our minds? The present era of drugs, stimulants, pain pills and elixirs, may then come to appear positively quaint.
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