Think Wink: Locked into The Diving Bell and the Butterfly

“Other than my eye, two things aren’t paralyzed: my imagination and my memory.”

–Jean-Dominique Bauby (Mathieu Amalric) in The Diving Bell and the Butterfly

My co-worker saw this film earlier this year and was recommending it to all.  I ended up seeing Persepolis in the theater over The Diving Bell and the Butterfly (Persepolis is another highly recommended motion picture), and both films definitely had staying power with me.  It continues to blow my mind how a man was able to “talk” to the world by using a single eyelid: one blink for yes and two blinks for no.  Jean-Dominique Bauby, known to his friends as Jean-Do, at first is naturally frustrated with his situation and wants death, but he is encouraged to speak to the world by his speech therapist and is able to pen an autobiography with the help of his dedicated assistant.  When Jean-Do’s book was published in France, it became a hit but its success was bittersweet as Bauby passed away soon after due to pneumonia.  

Locked-in syndrome (LIS), also known as pseudocoma or coma vigilante, is extremely rare and typically occurs after brain injury but can also be the result of circulatory system malfunction, neuron damage, or medication poisoning.  The body is completely immobile save for the eyes but the patient is conscious and awake.  Physicians find locked-in syndrome difficult to diagnose because the lack of verbal and physical responses from the patient.  Unfortunately there is no treatment for locked-in syndrome and patients do not make significant improvements, but patients can communicate more readily with the advent of computerized devices.

The film’s imagery, Jean-Do’s imagery, includes Jean-Do at the bottom of the ocean, in an old-fashioned diving suit.  He likens his condition to being immersed in the sea, being isolated and away from everyone at the surface.  However the former editor of French Elle is not defeated and does not let the pressure drag him down and likens his mind to a butterfly, floating free.  Even now, months later, The Diving Bell and the Butterfly came up in conversation, and I must admit that my mind is still blown. 

References

• Chisholm N and Gillett G.  2005.  The patient’s journey: living with locked-in syndrome.  British Medical Journal 331:94-97.
• Laureys S et al.  2005.  The locked-in syndrome: what is it like to be conscious but paralyzed and voiceless?  Progress in Brain Research 150:495-511.
• National Institute of Neurological Disorders and Stroke.  Locked-In Syndrome Information Page.  http://www.ninds.nih.gov/disorders/lockedinsyndrome/lockedinsyndrome.htm

He’s lost control

Recently I watched the movie Control which is based on the life of Joy Division’s Ian Curtis. Noted music video helmer Anton Corbijn directed the film; he also did the stylish vids for “All These Things That I’ve Done” by The Killers and Coldplay’s “Talk.” Frontman Curtis was diagnosed with epilepsy at the age of 22. Somehow I thought epilepsy was a disease that you had for life and was diagnosed when you were a child. That is not the case. I did learn in a class that epilepsy isn’t just defined by tonic-clonic (aka grand mal) seizures.

Seizures are caused by altered neuron activity and can be caused by things such as illnesses or brain damage. There are an amazing 30 different kinds of seizures, classified into the focal and general categories. With focal seizures, there is faulty brain activity at one part of the brain, resulting in symptoms such as sudden feelings and sensations or even a loss of consciousness. This was shown in the movie, when Ian is in high school and is asked a question by his chem teacher, but he has zoned out completely while staring at a structure drawn on the chalkboard. With general seizures, these are characterized oftentimes by the well-known twitching and jerking muscle movements. But having a seizure doesn’t automatically mean you are an epileptic. A person of any age can become affected by epilepsy, with more cases diagnosed in the under 10 set and the after 55 gang, and about 0.5 to 2% of the populace has this neurological disorder.

It was unfortunate that Mr. Curtis did not have access to the therapeutic possibilities of this day and age. Epilepsy cannot be cured but can be kept under control. Other famous individuals thought to have epilepsy include Socrates, Napoleon, Dostoevsky, and Alfred Nobel. Who knows, maybe if Ian had access to today’s medicine, he and Joy Division might still be making moody post-punk right now as you are reading this.

P.S. If you are curious about Joy Division, a nice companion documentary to the compelling Control is the not-so-creatively-named Joy Division.

Resources

• http://www.ninds.nih.gov/disorders/epilepsy/detail_epilepsy.htm
• http://www.epilepsyfoundation.org/about/statistics.cfm
• http://www.epilepsy.com/101/ep101_who