Paralyzed and cannot speak or move. What would you do?
I recently read an amazing book: The Diving Bell and The Butterfly by Jean-Dominic Bauby. It is very moving indeed. Bauby was the Editor-In-Chief at Elle, the fashion magazine in Paris, France. He was witty, rich, sought after by women, worldly and handsome. He had it all.
Then, at the age of 42, he had a devastating brain stem stroke which left him totally paralyzed, unable to speak and move, yet fully conscious. We call this “locked-in syndrome”; the person is there, fully aware, but is unable to move and can’t communicate normally. [here’s the film trailer from YouTube]:
It is a quite horrifying end for anyone but especially for Bauby, an intellectual and a socialite.
There was just one saving grace. Fate left him with the ability to blink his left eye. Pretty soon he was using this to communicate. He gained a kind of a life.
Eventually, Bauby was able to dictate an entire book about his experience. Somebody would read out the letters of the alphabet and he blinked when the right letter was spoken. The entire 130-page book was thus assembled one letter at a time.
Bauby likened his condition to living under a heavy weighted diving bell at the bottom of the sea. But his spirit was like that of a butterfly, light and wanting to be free. Hence the title he chose.
It could have been a grim book but in fact it is littered with humour and penetrating insight. It’s one of the best books I ever read. I repeatedly laughed out loud. I highly commend it.
The book was an instant best-seller and a movie was made of it, which I can also recommend. It is brilliantly done. Julian Schnabel won the Best Director prize at Cannes, a Golden Globe Award and an Academy Award nomination for Best Director.
Sadly, Bauby died just ten days after the book was published. He died of a fatal urinary infection, one of the risks of needing a catheter.
A Diet Factor?
What mesmerized me about Bauby’s story was that he had gone on a diet just one week before his paralytic stroke.
If you know my work you will know that I stand more than anything for the catastrophic effects foods can have on people. This goes beyond what we used to call food allergy. Genetic intolerance plays a part; actual toxins in food; hormonal, neurological and inflammatory pathways; immune system overload and many other complex mechanisms.
I have written often that there is no such thing as a safe, healthy diet. Whatever eating plan you can conceive, somebody, somewhere, will be allergic to the allowed foods. We all have to work out for ourselves what our own safe foods are and stick to them.
I have no doubt in my mind that the switch in eating habits is what precipitated Bauby’s stroke at such a young age. Something he was eating was toxic to him and set up severe inflammation in his body. The food might be perfectly well tolerated by the majority of us.
This is the whole theme of my book “Diet Wise”: find and eliminate your own toxic foods. [www.dietwisebook.com]
I had a kind of locked-in case, which I described in “Diet Wise”. Angela was 18 years old when I met her. She had a condition called cerebral palsy girl, which meant she couldn’t speak and had immense difficulty moving purposefully.
Long story short: she had food allergies, I found and neutralized them, and within 3 weeks she spoke for the first time. I don’t mean she learned to speak; I mean she started talking off the bat.
Angela’s first words were: “Mummy, I love you”. Her delighted parent nearly fell through the floor. It was only a matter of days before she was chatting away and said “I want to go to the pictures (movies).”
Angela had been locked in and written off by the doctors as no good. No one even thought of trying to communicate with her. Yet all the time she could hear and had feelings; she understood words, language and concepts. Angela was “brain damaged” in the motor sense and doctors had made the unwarranted assumption that she was also damaged in the consciousness sense as well.
What had happened was that her neural pathways were OK but inflammation, due to toxic foods, had caused them to malfunction.
His First Communication Caught On Film
What prompted me to write this piece was not just the Bauby book but a recent BBC program, investigating brain death, in which a man’s very first communication was caught live on camera. It was an amazing moment.
Richard Rudd had been horrifically injured when a motorcycle slammed into him at high speed. He might have been OK, with skilled surgery. But eventually an overwhelming infection attacked his body and he slipped into a coma. The brain damage caused by the infection left Rudd totally paralyzed. He ended up on a life-support machine.
He came to in a locked-in condition. No-one knew. The decision had been made to switch off his life support machine. But Rudd was able to blink and begged for life. This heart-wrenching moment was captured by a BBC crew making a documentary about patients with serious brain injuries.
Rudd has two daughters Bethan, 14, and Charlotte, 18, and that must have been part of his will to live.
Since the filming and before the program aired, Rudd learned to move his head an inch either way, smile and grimace. However, he is unlikely to ever come off his ventilator. Sadly, locked-in syndrome is usually fatal. Studies suggest that, within four months, nine out of ten people with locked-in syndrome die (Bauby lasted 16 months).
All this sounds like one of Edgar Allan Poe’s stories, “Premature Burial”, which is about the horrors of being buried alive.
There have been many urban legends of people being accidentally buried alive. Legends included elements such as someone entering into a coma, only to wake up years later and die a horrible death. Other legends tell of coffins opened to find a corpse with a long beard or corpses with the hands raised and palms turned upward. Robert E. Lee’s mother started what has become a legend about the premature burial of Ann Hill Carter Lee, the wife of Henry Lee III. On his deathbed in 1799, George Washington made his attendants promise not to bury him for two days.
It reminds me also of a TV program I saw as a kid. I think it was Hitchcock, or maybe “The Twilight Zone”: a man involved in a car crash was paralyzed with the exception of his little finger. The doctors all thought he was dead and were going to perform an autopsy on him the following morning. The paralyzed man thought that all he needed to do was to wiggle his little finger once the doctors arrived to start the autopsy and he’d be saved, however during the night an attendant had moved him so the hand with the movable pinky was now hidden underneath him and couldn’t be seen.
As the doctors were about to cut him up the man began to cry and the doctors saw his tears and so, in the end, he was saved.
What You Need To Do To Avoid Locked In Catastrophe
Don’t engage in any “living will” notions, asking not be left on life support. You don’t know how you will feel when the fateful moment of doom is upon you. At least three cases I have laid before you were very glad of life, even in unbelievably awful conditions.
The post Locked-In Syndrome Paralyzed and Cannot Speak or Move. appeared first on Dr. Keith Scott-Mumby.