03 February 2008

The Diving Bell and the Butterfly

A very long time ago Dr Grumble worked with some severely disabled patients. It was so long ago - more than a quarter of a century - that you are going to learn exactly where this was. It was Phipps Ward at the Southwestern Hospital in London. The hospital is no more. Even Google scarcely knows about Phipps Ward. Phipps Ward certainly never knew about Google. The patients in Phipps Ward came from all over the country and the one thing that characterised them all was that they required some sort of respiratory support. Some were unable to breathe at all unaided. Most were victims of polio. Some had other causes of respiratory muscle weakness. Still others had skeletal problems that interfered with their ability to breathe. Several patients could not move anything below their neck. One that Dr Grumble remembers well could just move a thumb and this enabled him to operate a Dictaphone which meant that he could earn a living running a business. It was a good living. He had a Rolls Royce ambulance that would take the iron lung that he was dependent on and this enabled him to go on tours of Europe. He died decades later of an unrelated cause. Its quite a challenge keeping somebody who has no respiratory muscles alive. The treatment in Phipps Ward was good. Phipps Ward opened Dr Grumble's eyes to how severely disabled people can have fulfilling lives. Dr Grumble knew these people well enough to ask them delicate questions about what they most missed about not being able to move. He thought that they might bemoan their loss of independence or their loss of dignity. Being dependent on others for everything including ones most intimate needs seems rather awful to Dr Grumble. But people who have been in such a state for years adapt and if you ask them what they miss they find it difficult to answer. Dr Grumble remembers one lady answering that she missed needlework. Dr Grumble has never even attempted needlework. These things make you think.

Doctors who have not worked with such severely paralysed patients may not realise that the lives of such people are not as bad to them as they may seem to others. But there are some truly dreadful states to be in - too horrible even to imagine. And that's where Dr Grumble's book recommendation comes in. The book is called The Diving Bell and the Butterfly and just occasionally, when it seems appropriate, Dr Grumble recommends it on his ward round. And just occasionally one of the junior doctors actually reads it. It doesn't take long because it's a rather short book. You can find out why here. All doctors should read it. Here's an email Dr G has just received:

Dear Dr Grumble, I just wanted to thank you for your recommendation of 'The diving bell and the butterfly', which I have just finished in one go (and have also just finished a box of tissues!). Best wishes, MF (I was one of the acute medicine SHOs at XXXXXXX Hospital from May to July)
It's sad that junior doctors don't expect to be remembered any more. But with shift work and consultants no longer working as they did in firms it's not surprising . Anyway Dr G did remember the SHO concerned and it was nice of her to send the email.

This post was first published under the title Book Recommendation on 9th September 2007. At that time Dr Grumble had no idea that there was a film on its way. Not an easy topic to make a film on. But it seems the film is a great success. Go and see it. Or read the book.


The Witch Doctor said...

Glad to see you back Dr Grumble, even though it’s second time around.

The Witch Doctor has a story to tell about this book. A young man gave it to The Witch Doctor to read in the summer of 2004 because he had been moved by it. It was passed around his family and friends. They all read it.

Six months later, this extremely fit and active young man had a catastrophic brain haemorrhage resulting in deep coma and quadriplegia. The Glasgow coma scale readings were consistently very bad and the prognosis bleak. However, remembering that he had read this book, someone close to him decided to talk to him about “The Diving Bell and the Butterfly” while deeply comatose. They spoke about it over and over again, hour after hour asking him to blink his eyes in response to questions in the way the author with the “locked-in syndrome” did. It seemed to work. At first others thought it was a coincidence or wishful thinking, but the response was consistent at a time he was responding to nothing else. Those closest to him could have a kind of conversation with him and could even tell when he was “sleeping” while comatose. Eventually after a few weeks consciousness was regained.

The Witch Doctor is a sceptic and unlike other witches does not believe in miracles. However, I believe more than ever before, the importance of relatives and friends in tapping into areas of a comatose patient’s brain using very personal knowledge of the patient in a way that medical and nursing staff cannot do. I always was aware of this but it has taken on a new meaning.

Three years on, the patient has recovered in a remarkable way, is not obviously physically disabled, and can even drive a normal car. Not back to the very fit way he was, and still some problems, but remarkable nevertheless.

I often wonder what degree of recovery there would have been if that book had not been passed around to read six months before. I often wonder if he would have lived.

Who knows.

Anonymous said...

I loved "The Diving Bell and the Butterfly", but the movie I'd rather see is "My Stroke of Insight", which is the amazing bestselling book by Dr Jill Bolte Taylor. It is an incredible story and there's a happy ending. She was a 37 year old Harvard brain scientist who had a stroke in the left half of her brain. The story is about how she fully recovered, what she learned and experienced, and it teaches a lot about how to live a better life. Her TEDTalk at TED dot com is fantastic too. It's been spread online millions of times and you'll see why!