Former aspiring singer writes book with his left eyelid after suffering massive stroke which left him with Lock-in Syndrome, which destroys body’s nerves
A former project manager and aspiring singer has written a memoir with only his left eyelid, because he is paralysed by Locked-in Syndrome.
The book, A Star in his own Imagination, was written by Croydon-raised Paul Allen, who has lived in South Norwood and Hither Green but now lives in Bromley.
Paul, a project manager with an IT company, loved singing and performing in musicals.
He appeared in many of them, including a much-praised performance as the Pirate King in the Gilbert & Sullivan operetta The Pirates of Penzance, and tells stories about many in the book.
His singing and acting also won him friends around the world.
He took early retirement from his day job at the age of 53, planning to build a business as a photographer – another of his passionate hobbies. But the recession came and his business suffered.
Paul was still singing in shows and charity concerts when a devastating stroke hit him on July 3, 2012, when he was 56. This resulted in him suffering Locked-in Syndrome.
The condition means his brain functions well, but the motor nerves of the body have been destroyed or damaged by the stroke and can no longer work properly.
So Paul could not move at all apart from blink his left eye – though in recent months he has started to be able to move more of his face.
All his bodily needs are met for him by sophisticated machinery.
Paul is able to communicate via his wife Liz and also via his carers using a communication system based on the blinking of his left eye.
And using this system, he has written movingly about how his life is now, and how it was before.
He says in the book: “Sometimes when I am feeling sorry for myself, I ask, ‘why me’?
“I am reminded of my blessings. I am glad I had the stroke. It has shown me how many friends I have and the length to which some will go for me.
“It has shown me how hard all the wonderful people all work for me. I am sure some of them want me to recover almost as much as I do.
“It has reminded me how much I love my darling wife.”
There are fewer than 400 people in the UK with Locked-in Syndrome, and Paul said: “With those odds I could have won the lottery.
“Paralysis presents many problems, not the least of which is that if I develop an itch, I am unable to scratch it.
“I would be deluding myself if I claimed not to miss some of my past life. In fact, I miss all of it, but there are three things I miss above all else – holding my wife, eating and drinking normally, and singing.
“The years since my stroke have taught me two things. Firstly, I should always focus on what I can do, not on what I can’t do.
“Secondly, I should never lose faith that one day I will make a full recovery.
“I am glad I had the stroke. It has given me time to reflect on what sort of person I used to be.
“My conclusion is that I was not a bad person, but there is plenty of room for improvement.
“One final word to my fellow Locked-in Syndrome sufferers. There is light at the end of the tunnel. It may be an extremely long tunnel with a very small light at the end of it, but you will get there.”
His devoted wife, Liz, said: “He’s still my husband. We both felt a great sense of achievement when the book was finished.”
Publisher James Essinger, principal of The Conrad Press, said: “I think this book will change how readers feel about people, about life, about destiny and perhaps most importantly of all, about love.”
The only similar book was by former editor of Elle, Jean-Dominique Bauby, about his life before and after suffering a massive stroke that left him with Locked-in Syndrome.
The book took about 200,000 blinks to write, and an average word took approximately two minutes.
Bauby died of pneumonia two days after it was published in 1997. It was a European best-seller, shifting more than a million copies.
Top, and inset, Paul Allen
