People tell stories, and some of the most moving and illuminating stories are the ones we tell after illness and trauma. In The Diving Bell and the Butterfly Jean-Dominique Bauby told us how living with Locked-In Syndrome was for him, a story told painstakingly by repeatedly winking one eye-lid – the only movement he could make – at the right point as a helper ran through the alphabet.
Not all stories are physically so difficult to tell, but all ‘Illness Narratives’ provide insights into how the tellers respond to moments of crisis, how they cope with the everyday things in the face of disaster, and how their lives and relationships are affected as they work to rebuild their lives and their sense of self.
Stories can help clinicians, whether they be doctors, nurses, paramedics, therapists or whatever, to glimpse what their clients might really be feeling on the inside. They can also be useful for carers and relatives of people who have a similar experience. Sometimes the stories show how clinicians’ words and actions are remembered many months later. Sometimes they give an insight into how our human bodies work as someone describes intimately how it feels to be without some aspect of that body – for example Pride and A Daily Marathon is an eye-opening insight into how much proprioception is needed for normal movement and body image. The stories almost always describe some of the emotional turmoil and efforts to ‘stick in there’ which are often hiding behind the brave face. ‘Illness narratives’ also show how people rebuild their lives, which is often far from obvious to clinicians who only meet their patients for a few days or even hours.
Under each of the Menus above, Books, Films, Shorts, Radio, there are reviews and, where possible, links to the original published narratives. As well as stories by the people who have experienced the traumas, I have also included some pen portraits, and collections of portraits, by clinicians, carers and family-members, as well as links to some related film documentaries.
I hope you find them interesting and useful.