The Diving Bell and the Butterfly

This evening I finished watching the extraordinary film "The Diving Bell and the Butterfly" that is about a man in the prime of his life who suddenly suffers a stroke leaving him paralyzed from the neck down, with only one usable eye, and unable to speak. It is almost unbelievable and hard to fathom but yes, it is a true story written by the man himself who is what the medical community refers to as "locked in".

Prior to my first brain surgery last fall, a friend asked me "what are you afraid of?". While I have been forced to consider the reality of my mortality since age 21, death is the less scarier concept. As every person with NF2 who has faced a brain surgery can relate, we are all familiar with the possibility of something going terribly wrong (sometimes out of medical hands and just left up to fate) leaving us in a state very much like Mr. Bauby in the film. The brain and brainstem are delicate structures and whenever there is a tumor or the need for a surgery, stroke is always on the list of risks. It happens. Some people are able to recover and some are not.

My fear is becoming like Mr. Bauby. Yet, at least he could still hear. Imagine having everything and every ability stripped from you except partial sight to see what is going on. I have often pondered what I would do if I were to suffer such a trajedy. I have also wondered how I would manage becoming completely deaf and blind with no balance function (a very real and discomforting thought; I spent 30 minutes a day for 3 days confined to no movement in the absence of hearing and sight during my cyberknife treatments in 2004. Although brief, each half hour was scary and a challenge to keep the mind focused long enough on productive thoughts to pass the time.)

Because he can hear, the speech therapists workout a way to communicate with him where he blinks his eye for the correct letter. Incredibly daunting, slow, and frustrating the communication, those who truly care stay and do not shut him out. While those with NF are not reduced to blinking for communication (at least most), like Mr. Bauby communicating with us changes. Those who accept the change life has forced upon us and are sincere in continuing a relationship or getting to know us will stick around and adapt together with us. Unfortunately, not everyone is who we thought they may be and relationships change and dissipate while some bonds become stronger.

In the beginning of the film (as told through the perspective of the locked in patient), Mr. Bauby is confused and in shock much like those with NF who wake up with unexpected or unprepared surprises such as complete deafness and facial paralysis that may affect the ability to close the eye lid. It can be a very lonely experience like being trapped in a box and yelling but nobody can hear you.

It is interesting the phases he goes through to reach acceptance and find a way to cope with his lot. The situation completely blows my mind and I find his story incredible. It is a good film to try to gain an understanding of adversity and the realities that those with NF face.

Enough now. You will just have to watch the movie for yourself. The link to watch the trailer can be accessed by clicking the lighthouse icon in the post title.