By Dave Andrusko
One of the most remarkably films my wife and I have ever seen was The Diving Bell and the Butterfly. We saw this French film in 2007 at one of those artsy downtown theatres.
To be honest, I knew next to nothing about the movie other than it was based on a book of the same name by a journalist. At the risk of sounding trite, I came away thinking it was one of the most inspirational stories I have ever encountered.
Michael Cook, writing last Friday, used that story to illustrate an important point. “What medical condition would definitely make life not worth living? At the top of most people’s lists would be locked-in syndrome: complete paralysis and inability to communicate other than by blinking. It was made famous in The Diving Bell and the Butterfly, a book and a film about French journalist Jean-Dominique Bauby.”
But “most people” are not those in that condition. Their response was not what you would expect.
“Surprisingly, though, the largest-ever survey of chronic LIS patients has found that only 28% were unhappy,” Cook writes. “Very few of them were interested in euthanasia – only 7% — or had suicidal thoughts.”
Three quick points. First, the naysayers would say the study, appearing in the new journal BMJ Open, was small: only 65 patients in France. But Cook points out how the results “has confirmed other research into how people adapt to catastrophic misfortune.”
Second, part of that adaptation is a thirst for social interaction. Steven Laureys of the Coma Science Group at the University Hospital of Liege in Belgium, is the author of the study and someone we have written about before (http://www.nrlc.org/News_and_Views/Dec09/nv120109.html). That interaction, not surprisingly, helps them battle the sense that they are not engaged in worthwhile activities. “Now we’ve identified some factors we can improve, such as access to mobility in the community, recovery of speech and treatments for anxiety,” Dr. Laureys says.
Third, everyone understands that being locked-in presents a tremendous challenge, especially the first year. But the situation a patient faces today is not necessarily the one they will encounter tomorrow, or five years from now. The impact of improvements in medical technology can be enormous—a truth that is crucial to helping patients retain hope. That is why Dr. Laureys says, “Recently affected LIS patients who wish to die should be assured that there is a high chance they will regain a happy meaningful life.”
Indeed, “I predict that in coming years, our view of this disease is really going to change,” Dr. Laureys says, according to Cook. “It makes a huge difference to be able to read a book or go onto the internet at will.”
But perhaps the important consideration of a study such as this (to quote Cook) is that they “challenge people to reassess what makes life worthwhile and ‘dignified’”
Cook quotes a Canadian neuroscientist unconnected to the study, who told him, “We cannot and should not presume to know what it must be like to be in one of these conditions. Many patients can find happiness in ways that we simply cannot imagine.”