(Author: Mark Ware MFA) When we are asked to describe others (aside from family and close friends), we tend to offer shallow summaries such as, he or she is ‘kind’, ‘generous’, ‘arrogant’, ‘attractive’, ‘devious’, ‘mean’ ‘caring’ and so on. This simplistic way of describing others may be due to the aspects of perceptual processing that seek the simplest and quickest conclusions. However, when we are asked to describe ourselves, it often results in a much longer explanation (particularly if we are being honest!) because we are familiar with the complexities of our own personalities.
In the title of this blog I mention Jean-Dominique Bauby, the author of a remarkable book entitled The Diving Bell And The Butterfly. Jean-Domique Bauby was editor of the French fashion magazine Elle. During 1995 at the age of 43, Bauby suffered a massive stroke that left him paralysed except for the ability to blink using his left eye and unable to speak, a condition described as ‘locked-in syndrome’. Bauby dictated The Diving Bell and the Butterfly one letter at a time by communicating through blinking his left eye. I read this book after my own stroke and felt an incredible emotional connection with it. Jean-Dominique Bauby’s book was an extraordinary insight into the experience of stroke and it served to raise a great amount of awareness of the condition. It was in part successful because it was written by someone on the ‘inside’ of the condition.
Historically, when stroke has been described by people who have not experienced the condition, portrayals have not always been so insightful. In The Count of Monte Cristo, Dumas’s character, M. Noitier de Villefort has locked-in syndrome, but able to blink with both eyes (at the time of publication in 1884-5 the terms ‘stroke’ and ‘locked-in syndrome’ were not in used). Dumas refers to M. Noitier de Villefort as …’the helpless invalid, whose body could scarcely be called a living one’. As with Jean-Dominique Bauby, M. Noitier de Villefort was able only to communicate through blinking: ‘It had been agreed that the old man should express his approbation by closing his eyes, his refusal by winking them several times, and if he had some desire or feeling to express, he raised them to heaven.’
Going further back in time to the 14th Century, King Edward III (13 November 1312 – 21 June 1377) died of a stroke at the age of 64. This is a comparatively recent interpretation of how he died. Some scholars believe he may have had an earlier stroke that could have been the reason for his inability to rule effectively in his later years and why his behaviour at that time may have been misunderstood. The indication of his stroke can be seen in the wooden effigy of his face that is housed at Westminster Abbey. It is thought that this wooden effigy is based on a wax death mask of the king that is no longer in existence. As with the time of Alexander Dumas, stroke was not a recognised condition, and so stroke sufferers would have been judged superficially on how they looked and behaved compared with able-bodied people.
Finally, this takes me back to the early part of the 14th century and William of Montacute. William of Montacute was a mason and sculptor. In the fabric accounts of Exeter Cathedral there are records of him creating carvings for the cathedral between 1301 and 1313. In his book entitled, ‘Of Sirens and Centaurs, Medieval Sculpture at Exeter Cathedral‘, author Alex Woodcock suggests that two of the carvings in the cathedral may show self-portraits of William of Montacute (the portrait above is featured at the base of a corbel near the cathedral’s organ). If this is the case, it is a rare discovery. Alex Woodcock suggests that prior to the 14th century, the concept of self portraiture may not have existed because people appeared to believe that self portraits could not convey the complexities of the ‘true self’. If that is the case, many centuries later we are again discovering that the true person is more than skin deep, particularly in relation to disabilities such as stroke.
(Above photos left to right: The Diving Bell And The Butterfly, Publisher of this edition: Knopf Doubleday Publishing Group / The Count of Monte Cristo / Wooden effigy of King Edward III. Photo: © The Dean and Chapter of Westminster / Possibly a self-portrait of William of Montacute at Exeter Cathedral / Photo: copyright Mark Ware)
This blog has been adapted from a blog originally written for sciencestrokeart2014