INTRODUCTION

On the 8th of December 1995, at the age of 43, Jean-Dominique Bauby had a cerebrovascular seizure whilst driving his son to the theatre. After spending almost two months in a coma, he awoke to discover that he had a condition called Locked-in Syndrome, the symptoms of which render the sufferer completely paralyzed, but in Jean-Dominique’s case, there was an exception of muscle movement in his left eye. After months of rehabilitation, a twenty six letter alphabet was created and arranged in an order of the frequency of use in the French language. With the help of speech therapist, Sandrine Fichou, Jean-Dominique mastered a new way of communication. The reader would slowly read out the alphabet and Jean-Dominique would blink on a letter, create a word, and eventually create a sentence. It was a slow and frustrating process, but one that would allow him the ability to communicate with the outside world.

On Friday 7th March 1997, a memoir of Jean-Dominique’s life and experience of Locked-in syndrome was released, titled ‘The Diving-Bell and the Butterfly’, selling twenty five thousand copies on its first day. Written by Jean-Dominique using the prescribed method and, with the aid of a ghost writer, Claude Mendibil, Mendibil would recite the alphabet and record every letter that Bauby would blink on Letter by letter, they created a one hundred and thirty page manuscript over the course of just a few months.

I was fortunate to read a translated copy of the book in 1998 whilst working as an actor in Northern Ireland. A colleague had gifted the book to me as a Christmas present and I read it cover to cover three times before the New Year.

So moved by the book and by Jean-Dominique’s perseverance, I instantly knew I wanted to develop something creative within the live theatrical arena, but unfortunately, it would be twenty years before I'd pick the book up again

In 2019 I became very ill. The optic nerves in my eyes had inflamed so badly that, apart from the unbearable headaches, my sight was lost. I was subsequently prescribed a strong course of steroids to bring the inflammation down, but it would be months before I'd regain my full sight again. Whilst I wouldn’t dream of comparing my own condition with what Jean-Dominique went through, I did wonder if my life was ever going to be the same? Would I ever be able to the job that I loved so much again? My sight did improve and when I was able, I read the book again (albeit I had to change the background to black with white writing). With the hope of a full recovery, it was at this point I decided to finally do something with the title.

During the covid lockdown, I was fortunate enough to make the acquaintance of a young composer, Charli Eglinton. Immediately impressed by Charli’s energy and musical style, we had a conversation about the title and started working on it instantly. I had always imagined it being a ballet, but Charli had other ideas and presented three songs to me a few days later The songs were excellent and I felt she had hooked into something with JeanDominique’s humour that is so consistent in the memoir. We were then faced with the challenge of how we give song to a character with paralysis. The decision was made to have two actors play Jean-Dominque, one that would play the physical embodiment, and another, the mind and soul. We set to work and eventually had a first draft book, music and lyrics. On the 15th May 2023, we gathered a group of actors for research and development where the seeds were sown for what I think is a remarkable story.

It has taken almost twenty-five years to get here, but sometimes finding the right collaborator takes time. I am thrilled that I found the right person in Charli.

I hope you enjoy,

Laurence Connor