"Life is precious" May 1st, 1983
A dreary day, weather-wise. The perfect weather for indoor things like blogging and reading and commenting and thinking, doing crafty things and painting.
After wondering for a long time about an appropriate comment for Gill’s recent blog posting, I came up with nothing. Having also sat and read a new book that I have acquired, written by a stroke victim, it is hard to ignore the fact that it is often forgotten that all disability must result in some sadness, however much the world celebrates the wonders of today’s medicine, and however much one decides to get on with life.
The article from the Daily Mail that Gill mentions caused me to be sad, the book that I am reading is sad too but, just like the newspaper article, there is not only sadness there, but something else too, h Hope.
You can read the article and see for yourselves, the book is in German, so not accessible to all who read this blog.
A locked-in spirit
The short book has been written withblinking-of-an-eye dictation and a laser-activated computer, by a young lady who suffered a stroke at the age of thirty-two and who as a result has locked-in syndrome. This means that from the neck downwards she cannot move at all and is dependent on others for all her needs, right down to filling in the answers in her mathematical puzzle books.
This morning I have only got as far as reading the first section in which she describes her life after the stroke. She describes the ups and the downs of the years, the hopes and the despairs, the sadness and the fears. At the very end she says, but with no regrets:
“I believe that if I had remained healthy, without the disabilities I now have, I would have been highly successful either on the stock exchange or in the computer world as an academic.”
She says that since being locked-in she believes her brain to be more active than it ever was before and that, because of all the experiences that her active earlier life gave her, she is able to master better the life she has now.
She believes that the positive outlook that she developed in her active young life is what she falls back on to help her live the new one to the full. As I said, it is a sad story but at the same time while reading it I can not help but be uplifted by this lady’s spirit.
Tough Strokes
In my stroke group we often discuss how the experiences of life pre-stroke have great influence on the new, unexpected life. The personality that has developed certainly does not disappear from the one second to the next when a stroke can occur. Stroke victims continue to be the people who they were previously, just like the lady with locked-in-syndrome. My clients motivate each other to talk about their interests, discuss their aims and wishes and ambitions. We try to move away from the sadness, from the mourning of what was or could have been, and see what can be achieved with the present and the future that they face now.
They all have amazing stories of courage to share, just as the lady in the book, which is called “ The walk with an incident in the middle”. Not many will have the chance to write their story in their own book but, like the story of the man with the new car and his freedom, I will try to share as many stories as I can here for them.
Now I am going to paint a picture and make a cardboard station building for my N-guage, the one my dad bought me when we were together at Easter.
Notes
Gill Maguire -
http://www.conductiveeducationinformation.org/2010/05/very-difficult-decisions.html
Spaziergang mit Zwischenfall - Birgit Hoffmann, Edition Fischer, ISBN-10: 3-89950-146-2
Susie Mallett -
http://www.susie-mallett.org/2010/05/not-stroke-of-luck-but-hard-work.html
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