The Diving Bell and the Butterfly
Posted February 28th, 2008 by Rich Hannon
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Is it ever acceptable to say “I want to die?" How much loss to our physical capabilities could we absorb before the loss also absorbs our humanity? Can there be hope and purpose without a functioning body? These are questions haunting every frame of the current French film The Diving Bell and the Butterfly.
The movie is based on the memoir of Jean-Dominique Bauby (Jean-Do), a forty-something, successful and debonair editor of the French magazine Elle. He suffers a massive stroke, which triggers a rare condition called Locked-in Syndrome, where the victim is totally lucid but otherwise nearly quadriplegic and cannot speak. Much of the film is shot from Jean-Do’s point-of-view. Opening scenes show what he sees when first waking up in the hospital and he realizes the nature and extent of his condition. He is paralyzed in all but eye movement and blinking. Then the doctors determine that his right eye cannot lubricate itself adequately and decide to sew the eyelid shut. You watch this process as if the camera was his right eye. He calls out protests – soundlessly and helplessly – as the stitching slowly closes off vision until the screen goes black. The doctor performing the procedure is casually telling Jean, "Do not to worry," while also commenting to himself about the quality of his handiwork.
Now only the left eye remains open. His case is assigned to a young, attractive speech therapist. Acting on sexual desire is impossible for him, of course, but physical catastrophe does not also paralyze the libido. This is the very definition of emasculation. And we see new examples in situation after situation. He cannot brush a fly off his nose. A technician blocks his view of a televised football match. And when everyone leaves his room and the door closes, there is no more environment stimulation – only still-life silence.
His therapist however, devises an ingenious method for him to communicate. She arranges the letters of the alphabet in order of frequency found in French words and speaks them in that order to him. He chooses his desired letter by blinking. Then she repeats this for the next letter. Etc. Until finally a word is spelled or she guesses it correctly. This is excruciatingly slow, but is also his only real way to reach the world. When they first successfully try this system, the sentence he spells out to her is “I want to die”. She chokes-up over this and has to leave the room. She has hope for him, and wants him to have hope also. But she doesn’t have to face his life each day.
Still, this communication thread is his lifeline, both to the world and maybe his own sanity. Before the stroke he had a book contract and decides to use the still-available option to write a memoir of his present experience, using this blinking dictation. The result is the book from which the movie takes its title. We are shown his metaphor for this new life – a helmeted deep-sea diver suspended in a featureless ocean with only a long air hose connecting him to the surface. This is the ‘Diving Bell’. The ‘Butterfly’ in the title is his metaphor for transcending the chrysalis of a shattered body. But the film is not some simplistic tale of indomitable courage triumphing over all odds. It is far more complex, ambiguous and consequently realistic.
One of the potential values (and risks) of watching a movie is that it allows us to vicariously substitute ourselves into the situations portrayed. And, if the film is substantive and thoughtful, we can ask important ‘what if’ questions, and ponder universal issues. Now, we are unlikely to experience anything as severe as Jean-Do’s tragedy, but everyone knows that we each face physical and mental deterioration. The young might understandably forget this at times, but those of us whose bodies have long been out-of-warranty cannot. In addition, we likely have loved ones who have traveled this journey farther, and we see in them the aging process unto death gaining ground.
My father spent nearly 40 years losing a race with Multiple Sclerosis. The last 10 years he was bed-ridden. The final six months he needed assistance to breathe. He did not want to die, but did not want to live like that, either. And it was evident to me, over the years of interaction and watching him decline, that this disease – and his stoic but failing attempts to cope – were also progressively destructive to his psyche. Such collateral damage is all but inevitable.
Christian hope for an eternity where this damage may be recovered is truly a concept worthy of the adjective blessed. But until that day we must live in a world of moral and natural evil that continually produces perversely creative ways to rob us of our humanity. The Diving Bell and the Butterfly doesn’t overtly moralize or play games with our emotions. It just tells the tragic story of one man. We watch. We think. And the film has served us well.
Rich Hannon is a software engineer who lives in Salt Lake City. His reading interests focus on philosophy and medieval history.
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Comments
This is essentially a topic of euthanasia. When is it appropriate or inappropriate to let people "go" painlessly, just as we compassionately do for our loved pets. None of us wishes to spend our last months or years of life tethered to life support. Is it ever the loving thing to release a loved one and say "goodbye." Of all people, Christians who believe in a glorious afterlife, should not fight such a compassionate ending.
We all have had loved ones who lingered painfully and for what use? For those who believe that suffering gives us better characters, it is usually because they have not been there, and can only speak theoretically.
I lost a niece in her early 50s who had suffered from MS for more than 10 years, eventually, as the father mentioned, she was unable to function, period.
There are those in similar circumstances who commit suicide on a daily basis. Do Christians have much to say on this, or is it out of bounds?
Each of us will some day die. Why do we fight it so desperately even when life has nothing but pain and suffering with no hope for anything better here? Is there anything to be gained?
I read this book a few weeks ago. It is an amazing story though I found the book kind of boring, to be honest.
I know this started as a movie review, but there's a whole deeper issue here. As one who has (and still is) physically endured more than just about anyone else I know, I will tell you this. The more you've endured, the less you will be willing to make any hard and fast rules on issues such as: the use of heavy-duty pain meds, deciding who should live and who should die, the definition of what “unbearable pain” is, and whether those who commit suicide are condemned to hell. Until you've been to places like these, please think carefully before you judge. Believe me, you have no idea of what you speak. Your words could possibly add additional pain to those whose pain is already unspeakable. This is especially true of caregivers and health professionals but includes even those who have been living with someone who has “been there” (although you will, undoubtedly, be the closest to understanding without ever having experienced it.)
Please excuse me for jumping in so deep so quickly. As tough as I am and as much as I've fought to keep it from happening, physical pain and suffering have (a number of times literally)nearly consumed my life, about 50 years of it. During that time I have found no words that could take me even close to being able to explain to someone what it's been like. You don’t know unless you’ve been there. You just don’t. It has also been my experience that both in the political arena, where laws are made concerning some of these issues, and within the church membership, those with the strongest views are usually those who have been through the least pain themselves.
Gaylene, I'm very sorry that you have had to go through so much pain and suffering. I've been very blessed considering painlessness and overall health so far. Even the thought of losing all this makes fear creep up my back. I pray (right now) that God will show you how he carries you and longs for the day when he returns to free you at last. Thanks for joining the discussion here!
Nobody knows what any other person's experience is like. And even the same intensity of experience will be interpreted differently by each individual. Therefore, decisions have to be made without the privilege of that experience permeating every decision maker's personal life.
To think carefully before judging is the christian obligation. Thank you for reminding us of that. Yet we realize that thinking still falls short of true empathy, and always will.
For Roman Catholics, suicide is the unpardonable sin. As Protestant Christians we should have a more compassionate understanding, shouldn't we? While there are those who quote scripture, saying that God will not send more than we can bear, that is not necessarily true. Each of us has his own tolerance level of pain, whether it be physical or emotional. Physicians, especially when there are specific legal orders, will administer sufficient pain meds that ease patients quietly to be free of it all. Only those who have walked that road, as Gaylene has, should judge another.
I read the book and found it very beautifully written, especially considering the method. I wouldn't call it boring, but I would call it vapid. How can a person have so little to live for and retain their indifference to God? On another level, witnessing the lengths to which this man was willing to go to leave a personal legacy, and the comparative apathy of Christians who have all the faculties, makes me want to impose a day of left-eye-blinking-only on the entire church.
Since I have not read the book, nor have I seen this film, I cannot comment specifically on how someone in this particular man’s situation could “have so little to live for and retain their indifference to God?” as Jennifer queried in her entry above. I can, however, tell you that it has been my personal experience that it is a myth that pain and suffering are going to necessarily make it easier for you to develop a better relationship with God. What you go into these experiences with is usually pretty much what you are left with to handle them with. A mind that is clouded from pain, medications and/or overwhelming physical weakness will find it much more difficult to even communicate with God, let alone develop a new or deeper relationship with Him. I’ve struggled with this for years, feeling that I had somehow ended up losing my relationship with God as soon as I was, again, thrown into the depths of bodily pain and incredible weakness. I found that I did not want to pray or read or even be read to, for that matter. I did not realize for years that the mind can get to a place where it shuts down from doing anything but surviving.
Later on I read a statement in Ministry of Healing that gave me great comfort: “Often your mind may be clouded because of pain. Then do not try to think. You know that Jesus loves you. He understands your weakness. You may do His will by simply resting in His arms.”
But still, these past few months, as I’ve spent most of my time flat in bed, I’d convinced myself yet again that I had lost most of my relationship with God because I had no desire to read or pray. Occasionally I would utter the only prayer my foggy brain would allow me to utter (just in case God could still save me from this spiritual pit I was in,) “Please, God, help me!” I can’t tell you how many times that has been the only prayer I’ve prayed for days. My mind is clearer now, clear enough to listen to a sermon last night on T.V. where the speaker mentioned how it is much more difficult to commune with God or to study when you are sick. I had peace once more as I remembered that God understands all this. I remembered, too, that the prayers of my family and friends continue to sustain me during these dark times, in ways that I still do not completely understand.
Please do not misunderstand. I absolutely believe, without a doubt, that God hears the faintest cry of the foggiest brain. I am also convinced that pain and suffering can often, usually after much time and a lot of struggle, bring you a relationship with your Lord that you would not be able to attain any other way. JUST DO NOT WAIT UNTIL LIFE THROWS YOU SOME DIFFICULTIES, BELIEVING THAT THIS WILL BE THE TIME YOU WILL FINALLY BE OVERWHELMINGLY CONVINCED TO THROW YOURSELF IINTO THE AMRS OF YOUR SAVIOR!!!
And....To Julian: Thank you so much for the care you showed in your posting, above. It is because of the kindness and prayers of those like yourself many of us find the courage to keep fighting when it would be so easy just to give up.
Gaylene. Thank you for your candor & vulnerability. It was for the potential of considering such deeper issues that I wrote the review - although the movie was both powerful and well crafted.
You are absolutely right, in my experience, that "is a myth that pain and suffering are going to necessarily make it easier for you to develop a better relationship with God" and the "mind can get to a place where it shuts down from doing anything but surviving".
Let me add a few details from my own experience, perhaps in corroboration. About 20 years ago now, I traveled to Indonesia and picked up a mysterious infection that left me feeling as if I had a raging case of the flu. But it did not go away as one would normally expect. I made the rounds of doctors - who were baffled. I would improve somewhat, then relapse. Eventually I was treated for an apparently virulent form of H-Pylori and am now essentially recovered. However, it took over two years to diagnose (and it remains uncertain that it was correct) and another 6-8 years before I felt normal on a regular basis. And even today, when I get sick, I have a nagging fear that I will not be able to get back to normal, even though I now repeatedly have been able to do so. It's a legacy I expect to carry always.
I would tell people that it felt like I had a flu that lasted for a decade and I might as well be talking in Martian. And I understand how incomprehensible such a statement is. But the reality was - as you have (in my experience) so accurately described - that we are unlikely to be 'made stronger' by such ongoing, soul-breaking trauma. For several years I was so dysfunctional my wife mostly had to act as a single parent. The ripple effect of chronic illness takes a huge toll also. Through the family, through friends, and beyond.
I tried to go to church for awhile but gave up. What I got there was so unrelated to what I was going through. I didn't go back for over two years. Too hard. On Sabbath mornings I would stay home, while the rest of the family went, and just be alone, wondering if I would ever be normal again. I would play through the hymnal at the piano. I kept coming back to #461 - "Be Still, My Soul, the Lord is on thy side", set to the tune of Finlandia. I would play that song and just cry. To this day I flat out cannot sing that hymn when it is chosen in church. Even though I like it. I'm just overcome.
I do not think my experience made me stronger. I would 'grade' myself at about C- or D+. I do not accuse God either. But, having experienced some affliction I don't really have any trustworthy words to say to another who is afflicted. I mostly think words fall flat and so far short. The best we can do is *truly care* when someone we know is suffering. Show it by our action. Be there when needed. Give space to them when that is needed. And love them so that they know.
Although I still can’t say I completely understand how God fits into everything that has happened to me, I can say this one thing: I have found that God is in the business of taking my pain and suffering and bringing something good from it.
Rich, more than anyone can know without actually living your life, and more than I can say without going into any details, I can tell you I truly understand where you have been. Please, please, please believe me. I do not say this lightly! In all my years of illness and pain I have only had one person say this to me who I knew, because I knew what she’d lived through, really truly understood. All she had to say was “I understand” and it meant more to me than all the other hundreds of well wishers I had then and have had since. I know you didn’t tell us much. But, you told me enough.
One more thing: I don’t really know yet, but I think there’s a possibility that I may one day look back on some of the times when I felt so far from God, like such a spiritual failure, and realize that I was actually closer to Him now than before it all began…
You know…back when you really felt you did have a close walk with Him…
I wish someone further down the road would tell me.
The few hours, late at night, when I do feel better and my head is clearer, have come and gone and I must head back to bed. Thanks for sharing your story with me, Rich!
I loved "The Diving Bell and the Butterfly", but the movie I'd rather see is "My Stroke of Insight", which is the amazing bestselling book by Dr Jill Bolte Taylor. It is an incredible story and there's a happy ending. She was a 37 year old Harvard brain scientist who had a stroke in the left half of her brain. The story is about how she fully recovered, what she learned and experienced, and it teaches a lot about how to live a better life. Her TEDTalk at TED dot com is fantastic too. It's been spread online millions of times and you'll see why!
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