It doesn’t matter how many Kindles and iPads there are in the world, there is something completely unique and special about sitting down with a paper book and experiencing the time, place and feelings conveyed from the pages. Certainly there’s nothing quite like the feeling conveyed in A Solitary Confinement, written by Bespoke Hotel’s Robin Sheppard.
An autobiographical account of being struck down with Guillaine-Barre Syndrome (GBS), the book shows Robin’s characteristically lyrical way of speaking and writing, making the pages a pleasure to turn despite the ordeal within them.
“I wanted to shout… ‘I’m leaving, cheerio, tata!’ I passed out.” He writes as he speaks, candidly about the autoimmune disease that saw his own body attack itself. Factually we are told that GBS manifests as numbness and tingling in the fingers and toes before spreading as a terrifying weakness through the limbs and leading to paralysis of those areas (which can include the respiratory system). One in 20 people who get it will die from it, and for those who don’t recovery can take anything from two weeks to six months.
What Robin brings to the GBS story however, without fuss or hyperbole, are the feelings and thoughts that go with such a horrendous experience. The effect that it had on both him and his family is made all the more evident by the knowledge that the book was a collaborative effort with the cover designed by Robin’s youngest son, Charlie.
Ultimately the book does what all books should do – it gives you experiences and understandings that you couldn’t get in any other way, or at least one hopes that you don’t in this case. Much like the Diving Bell and the Butterfly, this is something that could happen to anybody at just about any time, so it is fitting that the eloquent tone of voice and self-deprecating wit pinpoint an unimaginable feeling in a way that all of us can relate to.
Importantly, this book aims to use the trauma it conveys and make a difference. It’s about awareness, knowledge and making a practical as well as emotional impact. As such, all proceeds are going to the GBS/CIDP Foundation and the charity GAIN, who offer support and information to those with the disease.
If one moment can change a man’s life, then perhaps a book can make a difference as well.