Monthly Archives: May 2014

Do you like what you see?

May 2014.  This blog was written by Mark Ware and published by the Stroke Association for Action on Stroke Month 2014 Science Stroke Art 2014:

Still from the ACE funded video composition entitled, 'The Dog that Barked like a Bird'

Still from the Arts Council England funded video composition entitled, ‘The Dog that Barked like a Bird’

Do you like what you see?

On 2nd May 2014 at The University of Manchester, as part of Science Stroke Art 2014, I gave a talk about my art since having a stroke, followed by a screening of my video composition entitled, The Dog that Barked like a Bird, followed by a Q&A session.  I rarely give talks about my stroke and this was the first time I’ve spoken in any detail about The Dog that Barked like a Bird, an Arts Council England funded video composition based on a diary I kept after having a severe stroke in 1996 at the age of 39. For me, the Q&A session was the most interesting part of this event (as I’ve seen the video composition and heard my talk before!)  It was good to hear about other stroke survivor and carer experiences.  It was also valuable to receive feedback about my art and my experiences post-stroke. 

Two questions in particular remain with me.  Someone in the audience  referred to the imagery in the video composition that shows me crawling along a floor (see above).  It represented a time when I couldn’t walk because of my stroke and so I had to crawl about my home on my hands and knees instead.  The two questions I was asked were:

1. Do I try to disguise my disability when I’m in the company of others?

2. How are other people supposed to cope or respond when they see me crawling around (as stroke is such an unfamiliar condition to most people)?  

Questions of this type frequently crop up in relation to a wide range of disabilities. The answer to question 1 is simple: I only reveal the true extent of my disability to a few people who are very close to me, understand my condition, and accept who I am.  I refer to these people as being within the ‘inner circle’. I fully understand that many people aren’t familiar with stroke and may not be exposed to disability on a daily basis.  Therefore I can’t expect everyone to understand the situation I find myself in.

Over the years since my stroke, a few people have referred to me as ‘brave’ because of the way I deal with my disability.  I’m not brave at all.  I wasn’t given a choice.  No one came up to me and said:‘You have two options.  You can walk to the South Pole or…have a stroke.  Which one would you like to choose?’ No, I’m not brave.  I simply have to accept my disability and the challenges it presents me with.  I din’t have a choice.  If I had had a choice I would have gone to the South Pole.

Although Government would like us to believe otherwise, we live in a society that tends to hide away disability, or that occasionally portrays people with disabilities as ‘scroungers’ and a burden to society.  Strangely, at the same time, once in a while people with disabilities are held up as great role models, as was the case during the Paralympics. The reality is that not all disabled people are paralympians.  Nor are all disabled people benefit cheats.  The truth is far more boring.  My disability results in the daily need to plan and prepare for even the simplest of tasks, even brushing my teeth.  I don’t need sympathy, but understanding is helpful (the answer to question 2).  Understanding that I do my best.  That if I’m seen crawling across the floor, it’s due to my disability and my inability to walk, not something designed to make people feel uncomfortable (or an attempt to obtain benefits).

If the general public is fed misleading or inadequate information about disability, it’s no wonder that public responses are occasionally misjudged or ill-informed and in that respect it’s not surprising that many people don’t understand stroke, or know how to respond to people who have had a stroke.

In addition to funding stroke research, The Stroke Association plays a vitally important role in raising awareness of stroke with an emphasis on the person as well as the condition.  Its employees and volunteers do a remarkable job in helping stroke survivors discover that there is life after stroke and they should feel a great sense of pride in the incredibly valuable work they do. Most people are touched by stroke either directly or indirectly during their lives and yet there is still a need to raise awareness of this condition and the dramatic life-changing impact it can have on people’s lives. If you don’t do so already, please try to support charity’s efforts to create a wider understanding of stroke.

Robinson Crusoe: before and after stroke

May 2014.  This is a blog written by Mark Ware and published by the Stroke Association for Action on Stroke Month 2014:

robinson-crusoe-1

Still from the Arts Council England funded video composition entitled, The Dog that Barked like a Bird

Robinson Crusoe, written by Daniel Defoe, was published in 1719. I first read this novel in 1976. I read it again during 1999, three years after having a severe stroke at the age of 39. Before and after a stroke. The book was a good read the first time round. It turned out to be a profound read the second time. For me, Robinson Crusoe is a ‘cinematic’ novel. The pace and content of its opening scenes set up the isolation Robinson Crusoe experiences before he later discovers man Friday. Post stroke, this novel raises one question in particular that since my stroke I’ve been forced to face: ‘If you were to be stranded on an island alone in the knowledge that you might not see anyone again, stranded in a way that makes communication with anyone else impossible, what would you think, what would you say, what would you do and what would you create?’ In retrospect, I can see that before my stroke I desired to please people and sought their approval. So much so that I became very dependant upon that approval and it frequently dictated what I did and who I was.

robinson-crusoe-2

Mark Ware at Science Stroke Art 2014

It always puzzled me that I felt like a different person in different company. Sometimes I was entertaining and other times, extremely boring. The reason for this insecurity was simple: I had never been forced to face myself. My stroke changed all that. It violently ripped away my facade and left me with a high level of disability, both physical and cognitive. It also left me in a state of mental isolation and detachment from the people and world around me. I was no longer able to entertain (or to be boring).

During the early stages following stroke, whenever I was in public, people would avoid looking into my eyes but I would sense them watching me as I was wheeled in my wheelchair past them. I no longer knew who or what I was. A little time after being discharged from hospital I lived alone for a while and on most days I would see only two carers for 1/2 hour in the morning and 1/2 hour in the evening. The rest of the time was spent sitting in a chair on a drip-feed, unable to move, accompanied only by a cocktail of post-stroke neurological challenges.

The most difficult challenge of all was to face myself and to accept my isolation. At first I felt as though I was going mad. Then eventually, after several months (I think), I came to terms and accepted who I was. I no longer sought to be somewhere else, or to be someone else, or to impress others. I was content to be alone, to face and accept who I am. It was incredibly empowering development and even today, 18 years after my stroke, I am still empowered. This empowerment even affects my art. I no longer create art that sets out to please others. I create art that expresses how I perceive the world around me. Of course I welcome positive comments about my art, but approval no longer dictates where my art develops. I don’t know if my art is ‘good’ or not. That’s not for me to say. All that I can say is that it’s is as honest as I can make it.

‘And now being to enter into a melancholy relation of a scene of silent life, such perhaps as was never heard of in the world before, I shall take it from its beginning and continue it in its order’ – Robinson Crusoe at the true beginning of his story.