Tuesday, April 29, 2008

Locked-In Syndrome Movie

"The Diving Bell and the Butterfly"
DVD Release 4/29/08

"The Diving Bell and the Butterfly" movie is based on a book by the same name about which I wrote extensively on 11/30/07 (see archives.) The book's author, Jean-Dominique Bauby writes about his experience with Locked-In Syndrome after a stroke at age 43 years of age. This syndrome is characterized by complete body paralysis and inability to speak. The challenge is how to communicate. People around Bauby must first recognize that he is actually mentally intact in his body, then a system must be found that will enable him to express himself.

Of special signifcance in my original post was mention of two individuals living today who know first hand what a diagnosis of Locked-In Syndrome means to their life. I since have noted a third here, but there are likely more. This sudden circumstance presents the communication challenge which these people have faced with varying success in overcoming (not all can) :
  • a New Jersey, U.S.A. husband and father, Steve Chiappa, in 2001,
  • a young mother Glenda Hickey in 2000 of Alberta, Canada, as noted in these links to ABC News stories
  • a New Zealand Rugby player, Nick Chisholm, since 2000 in a BMJournal report.
I read Bauby's book when it was first published, then followed with intense interest the progress of the book to movie screen a few years later. "Diving Bell..." had limited theater release last year beginning with that end of ' 07 release date. Now the DVD is available.

I expressed some concern last November about whether or not the book's translation to the screen would aptly represent Bauby's story, since I have often been disappointed with other books' movie versions. I wrote I would comment on that matter once I viewed the film.

I had an opportunity to view this movie some time ago prior to the earlier Academy Awards ceremony. I was quite pleased with the production and can unequivocably recommend the film for viewing. I thought the movie portrayed Bauby's experience in such a way as to convey the unique happiness and joy he was able to create for himself within his limitations.

The Academy of Motion Picture Arts and Sciences, awarded the film's director, Julian Schnabel an Oscar. (Correction: thanks to OldOld Lady of the Hills at "Here In The Hills": Schnabel was nominated for an Oscar but did not win.) Other awards for the film preceded that nomination including a Golden Globe as Best Director and Best Foreign Language Film. Read Chris Cabin's review at "Filmcritic.com"

The movie trailer can be seen at this Moviefone link.

The following comments will be most fully appreciated after reading my earlier post referenced above or even viewing the film.

I was able to immerse myself in this movie's story which features French dialogue augmented by English subtitles. The visual effects were especially significant in their ability to convey Bauby's perspective. I experienced simultaneously with him awakening to the fog-like gradually whitening light he sees when he first emerges from his stroke-caused coma. He sees a world that is startling to him as slowly human figures assume a more clearly defined presence, then he hears their voices offering information orienting him to his situation. This is his beginning to derive meaning from his surroundings, establish his new reality.

Medical personnel begin with accepted informal testing procedures to examine every facet of his functioning, including senses, motor skills for movement. Can he hear? Does he understand the words he is hearing? Is he able to speak? What body movements does he have? If he can't talk, is there some other way in which he can communicate? Is it possible to somehow devise a system using questions that require some sort of yes or no response, but with no spoken words? Could he possibly use a system that doesn't require speaking to actually designate words, then put words into sentences for complex thoughts? These questions were only a few of many that are asked, but require in depth exploration over a lengthy time period to determine whether or not he still has any of these skills.

Incorporated into this film are details of his life prior to his stroke with scenes integrated through the means of flashbacks. We become acquainted through his own recollections of complicated factual aspects of his personal life with his children, their mother, his father, his own psychological reckoning with his circumstances. His attitude, emotionality, and effects on behaviors, feelings of others are an integral part of this movie's story, his life story.

He perceives his paralyzed virtually motionless body as being beyond his control alone in a sea; envisioned like a heavily leaden-weighted deep-sea diver, sinking to the ocean bottom much as a diving bell. Ultimately, he realizes his mind is free as he imaginatively visualizes a world, desired activities, people, places in which he flits about much as a butterfly.

I, personally, find Bauby's story-telling of his life experience illustrative of possibilities in such a physically limiting life situation. I recommend this movie not only for that reason, but because I experienced the film overall as a pleasure to view. I do want to add a few thoughts that came to my mind as I watched the movie.

1. I think the film story may have minimized one important facet I recalled Bauby writing in his book. He reported that initially, for some period of time, he was presumed by many, including some medical professionals, to be a mental "vegetable" by virtue of the fact he was perceived as being unable to talk. He wrote about overhearing discussions by some staff to that effect, the anger and frustration he felt but could not express. He even mentioned being subjected to discussion with words to the effect that perhaps his life could be allowed to end since he was just a vegetable, anyway. My impression from reading the book was that he had a much longer period of such awareness and the medical staff were much slower to establish his mental capabilities than evidenced in the film.

I believe that communication issue is of singular importance to everyone, family members, friends, medical personnel. We should all keep in mind that just because someone is without speech, or gesture, assuming the individual is incapable of understanding could be a tragic mistake. By the same token we cannot assume that everyone who does not speak, understands everything they see and hear. Obviously, a determination of the situation must be carefully made.

2. The scene where Bauby is asked short yes and no questions beginning with the most simple such as, are you a man, are you a woman, etc. did accurately reflect how insulted he felt. He did not understand the need for what he perceived as demeaning questions. A few individual patients and some family members who overhear this sort of questioning can become quite irate, even despite having received explanatory information about the necessity for questions at such a basic level.

Establishing the level at which someone is able to understand after any sort of possible life altering brain event is a very delicate process in which you can never assume any individual continues to function as they did before. In the beginning under those circumstances, querying anyone with higher level questions i.e. do cats bark, do dogs meow, can be highly demoralizing to someone who is suddenly shocked with the realization they should know the correct answer, but now they don't. Some are so embarrassed, they pretend, and guess. Keep in mind there's a 50-50 chance of getting the right answer with a guess in yes/no questions.

3. Such instant establishment of someone's ability to understand all words said to them with just one or two basic yes/no questions as depicted in the movie, is generally not likely. There's a gradation of question complexity.

4. A patient being given a choice of visitors is good. There can be situations where a patient's choice to not see select people might not be in that same patient's best interest and an effort to circumvent their expressed choice might be better -- at least one time. But care must be taken since as individuals we do have the right to make choices.

5. There were probably more interventions before the alphabet card was introduced and having him spell words -- including introduction of words to see if he could read them, then sentences and more. But, that would have been tedious to include all that in the movie.

6. His imagination and memory were not paralyzed nor was his ability to blink his left eye which they established. We cannot always assume these functions are fully intact with someone.

7. Humor was an integral part of his recovery. There is a scene with a telephone man who couldn't understand how a man who couldn't talk could use a telephone, followed by a funny comment about which Bauby laughed -- in his mind. I believe humor is essential for all.

I would especially welcome the comments of any others who view this film, have read the book, or find this subject to be of interest.


  1. I haven't seen this film yet, but it is on my Netflix List...!
    Just in terms of accuracy Joarad...Schnabel did not recieve the Oscar for Directing..He DID recieve a nomination in that category. The picture and Schnabel DID win a lot of Awards.
    I will come back and comment after I see the film.

  2. Haven't seen it, nor read the book.

    Right at this moment, dealing with the illness of my mother, I don't think I can handle anything quite so deep/depressing. Though I am sure the fact that the character overcame his disability to some degree, it was still a huge, almost impossible challenge.

  3. This story makes me realize what a blessing the ability to communicate really is.

    Thank you.

  4. I agree with your review of the film. I read the book in French and felt the weight of each letter as I read. I didn't want to see a movie version. The narrative is so internal. I couldn't see how a screen writer could manage to convey any of that depth. I was really impressed with the film for all the reasons that you mentioned. Still, I like the book better.

  5. Loved the book, but missed the movie. I'll try to rent the DVD this summer. It has had excellent reviews in France but wasn't shown for a long time.

  6. oldoldlady: Thanks for catching my mistake on the Oscars award -- should have double-checked instead of relying on my memory. ;-) Look forward to your reaction in the future after seeing the film.

    Pattie: Can understand how you might feel. There have been movies and books that I was reluctant to see or read because of what was happening in my personal life and other life experiences. I did find this movie to be much more upbeat and positive than might seem.

    Chancy: Yes, speech and our ability to easily communicate, like many other complex functions i.e. swallowing so we can eat and drink safely, are functions we all take for granted.

    crayons: Am glad to hear your reaction to the movie, especially after your having read the book in French as it was originally written. I, too, preferred the book, but then have found that to be true with every movie I've ever seen based on a book I've read. Suppose that's partially because movies can never capture all the details, nuances and even some significant book story lines.

    Claude: Will be interested in your reaction to the movie version if you see the DVD. Perhaps you'll be moved to write about it at "Blogging In Paris."

  7. Lou Gehrig's took my friend's life after I had seen this movie. She was blessed to have someone to attend to her who could read her and use communication tools. You were the one who alerted me to this movie and I was so delighted to be able to see it in Santa Fe when it opened; I missed it's limited release during the film festival. If one were to read either the book or see the film, would you advise the film? I thought it incredibly well done.

    However, recent experience has made me think about how this movie is very applicable to anyone who discovers they are/will be faced with the loss of physical capabilities. There are ways to overcome the loss and find beauty and express personality and a place to "live" creatively.

    Thanks for the heads-up that it has been released on dvd!!!

  8. I saw the movie yesterday. I thought it was done beautifully and would give it 4 stars.

    It was bittersweet for me because my husband died of multiple malignant brain tumors. He had a stroke and was unable to communicate very well after that. Then a tissue biopsy left him without the ability to speak at all. I wish I had seen the movie before this happened and I would have tried harder to develop a way of communicating with him. I am sometimes tortured by my inability to help him. It must have been hell to hear and understand and to not be able to reply. His mind was fine until the end and I have much guilt in the knowledge that I didn't explore ways to help him. Darlene

  9. MotherPie: I'm a bit late in responding here to your query. Almost always I would recommend the book over any movie made of it, if the choice is simply one or the other. The book is generally much richer and more expansive and "Diving Bell..." is no exception. If there is no ample reading time, then see the movie. Best of all see the movie and read the book as I did.

    I agree with your observation about the more positive ways of dealing with loss. The language we tell ourselves is so important in helping create our attitude -- doesn't mean we won't have times of discouragement.

    Darlene: Hope you come back and find this as I don't have a link or email to write you, so will comment here. I apologize for the response delay.

    Don't be hard on yourself, you did the best you could with what you knew at the time. That's all any of us can ever do. Each of us learns how we can do things differently. We often may find ourselves wishing we had only known sooner -- but we didn't, so we have to let go of the critical self judgement.

    Instead know that you have acquired more information to apply should you ever encounter the need for communicating with someone experiencing communication difficulties. Or maybe you'll have a future occasion to share what you've learned with someone who could benefit from what you now know. I think all of life can be a learning process that never stops.