Locked-in Syndrome

Many of you will remember my earlier pieces on “locked-in syndrome”, a condition caused by brain stem injury in which patients are fully conscious but can’t move or communicate, except through eye movements or blinking.

One of the most celebrated cases was Elle magazine’s fashion chief Jean-Dominic Bauby. He suffered a catastrophic stroke (which I suspect was due to a cocaine habit). As a result he could communicate with the world only by blinking.

He dictated an entire book by having someone recite the alphabet and then blinking when they said the letter he wanted next. What determination!

Bauby’s book was called “The Diving Bell and The Butterfly”. It signifies the feeling of being sealed in a heavy metal diving bell at the bottom of the ocean, while having a soul that is restless and wanting to fly away, like a butterfly. It was eventually made into a movie (moving in this sense could also mean very heart-rending).

All this I wrote about in Letter From Serendipity 57. It’s now transferred here to the new alternative-doctor.com blog: Jean-Do Bauby Story

Now a new study published in the British Medical Journal [BMJ Open, news release, Feb. 23, 2011] has shown that surprisingly many locked-in patients are kind of happy. Only 7% said they wanted to die (euthanasia).

Even though more than half of the patients acknowledged severe limitations on their ability to lead a normal life as a member of their community and 20% said they couldn’t take part in everyday activities that they considered important, 72% of the patients said they were happy. Wow!

About two-thirds of the patients had a partner and lived at home and 70% had religious beliefs, the investigators found.

The finding that nearly three-quarters of the patients report being happy overthrows the obvious assumption that locked-in syndrome patients were miserable and should be candidates for euthanasia or assisted suicide due to poor quality of life.

The 28% of patients who said they were unhappy cited issues such as difficulty getting around, restrictions on recreational/social activities, and the challenges of coping with life events.

Of course “happy” in this context would seem strange to us. But the secret, I believe (for all of us) is to define our lives in terms of accepting what we have and then setting goals to improve that but avoiding moods which deprecate it!

Isn’t that the true secret of all happiness?