Locked-in Syndrome

The Diving Bell and the Butterfly is the book written by Jean-Dominique Bauby describing the last months of his life after a massive stroke which resulted in locked-in syndrome. This means that the sufferer loses virtually all bodily movement, whilst retaining full mental faculties. Jean-Do had been Editor-in-Chief at Elle magazine in Paris and found himself after a 20 day coma in a ventilator and being fed by an IV drip (like being trapped in a “diving bell”) whilst his mind was alert and fluttering (like a “butterfly”).

Jean-Do wrote his book by blinking his eyelid (one eye had been sewn up as it was not lubricating properly). A secretary pointed to letters on a board, and one blink was a “No” and two a “Yes”. Thus the words were laboriously spelled out until the book was complete. Jean-Do had had his accident in December 1995, and his book was published in February 1997 about a week before he died. The book became a best seller, and has now been made into an award-winning film directed by the artist Julian Schabel.

Read the book and see the film. The last year of Jean-Do’s life is an inspiration which also gives a real insight into the life and meaning of life of someone whose mind is still alert but whose body is locked in.

Jen-Do founded the Association for Locked in Syndrome from his bed, as a way of communicating information about this quite rare condition, but also to enable sufferers to share their thoughts.

Read The Diving Bell and the Butterfly by Jean-Dominique Bauby
Check out Association for Locked-In Syndrome: www.alis-asso.fr

Nick Chisholm has lived with locked-in syndrome since 2000. Read his account which is interspersed with information on his condition and a commentary on the clinical and ethical issues that arise in locked-in syndrome. It starts…

I had my accident on the rugby field on 29 July 2000 about 2 00 pm, just before the ball was thrown into a line-out. It just felt like a simple case of concussion (everything went blurry). I staggered to the sideline, the coach asked me "What's wrong"?

After six days of going in and out of seizures, after what seemed like all the tests known to man, they said I had had several strokes of the brain stem and then one major one, which left me with the extremely rare condition known as locked-in syndrome, not able to do anything.

I talk by using a transparent Perspex board (about A2 size) with the letters of the alphabet spaced out on it (identically on both sides). The person holds it up between our eyes (about 800 mm apart). I spell out each letter of my sentence using my eyes (similar to a typewriter), with the other person guessing each letter I'm starring at, until I've spelled out a whole sentence—extremely laborious! It's also very difficult (almost impossible) to express yourself or be sarcastic.

www.bmj.com/cgi/content/full/331/7508/94