The Diving Bell and the Butterfly
By DJ Eye Tech
Last year I went to the cinema to watch a film which is quite rare for me as I usually wait until they are released on DVD before I watch them, but this was a very special film for me. It is a French film called The Diving Bell and the Butterfly.
It is a true story written by a man using his eye to spell out every letter of every word to write about his world. One of his speech therapists would recite the alphabet to him and he would blink when the correct letter of the alphabet has been said. He would make up words by going through this laborious process.
He has a type of brain damage called Locked-in Syndrome. I have first hand experience of this process of communication because I too have Locked-in Syndrome. I had heard of the original book and one of my friends kindly read it to me before I saw the film.
It is a very emotional film; I have never been affected by a film in the same way. It felt very strange sitting in the cinema whilst watching it because so much of the things he experienced were similar to my life.
It was really useful to me because it forewarned me of future situations which will happen and will be awkward due to my locked-in state.
It is important to remember it is dramatised for film and is set in the past and not totally accurate. Some of the medical people who came to see it with me at the cinema didn’t think some of the medical procedures were accurate. But it would be very useful for some of my carers to take note of how it ends.
It is a difficult film for me to watch as it is in French with English subtitles. Since my bicycle accident I have had double vision as well as Locked-in Syndrome. I have glasses which help a bit but I will never have perfect vision again. Luckily there’s a version of the film dubbed over by the original actors in English.
The Diving Bell and the Butterfly is an award winning film which won the award for the best adapted screenplay at the BAFTAs, the best director at the Golden Globes and the best director at the Cannes film festival in France.
Everybody should see this film but be aware anybody can get Locked-in Syndrome for a number of different reasons. I for example did not get Locked-in Syndrome the same way as Jean Dominique Baubey the author of the Diving Bell and the Butterfly. I urge you to watch the film, it is available on DVD.
If you would like to know more about me and Locked-in Syndrome look on my website. Its address is:
Please contact me through my website by sending emails to: bram@eyelife. org