PLAYTHING OF THE GODS (or why did that bird shit on me?)
We all have days when we wonder what the hell it's all about and, despite initial optimism, the past two weeks have been like that.
A couple of weeks ago, I helped to publish a book of poetry on behalf of my dear Twitter friend, David Lewis. I've already talked about him in my two most recent blogs but, just in case you missed those, David is a lovely, kind man who is in the final stages of a terminal disease and wants to help a charity called Harrison's Fund. The poetry book is being sold to aid that fund, with no money going to David at all.
Despite our best efforts and David's daily blog reaching thousands of people around the world, sales have been slow. A wonderful core of supporters bought the book and tweeted about it but things seem to have stagnated. Even a 25% discount by the publishers didn't seem to tempt many people. To say that this is dispiriting is to understate the case. As I've pointed out before, the e-book costs about the same as a cup of coffee and the print book about the same as an ordinary bottle of wine and probably less than a packet of cigarettes (I don't smoke so I'm not sure of the prices these days). While times are hard, people can generally find the cash for a couple of drinks so why can't they find that money to help thousands of children and their families?
To repeat what I've said before, Harrison's Fund is raising money for research into Duchenne Muscular Dystrophy. 1 in 3500 children (almost always boys) have this disease; that's an awful lot of children. Soon after I became involved, I saw a TV programme about a family which had a son suffering from the disease. The programme, DIY SOS Big Build (BBC), showed a charming young lad whose limbs are already beginning to fail; he may live into his teens or possibly into his 20s but not beyond that, unless some cure is found in the meantime. It was very moving.
Harrison, of the eponymous fund. is a young boy whose family is doing its best to raise awareness and money; the fund is part of the Duchenne Alliance. I can't imagine the pain the family must go through daily when faced with this uphill struggle and the knowledge that young Harrison may not be with them for much longer. Neither can I imagine David's pain as he struggles to stay afloat and do something very important with the time that remains to him.
This is one charity where we are not asking for money for just a sticker or a flag; you actually get something that you can keep and look at again and again. David has laid bare his feelings, so long hidden and repressed, and writes so sincerely of love and hope, without shying away from the prospect of death.
Each day, I think that sales of the book will be up and people will realise what we've been trying to do. Each day, I'm more than a little disappointed and the disappointment is heightened by the daily struggle with my father, who has severe dementia, and other personal problems which I won't begin to bore you with.
It was in this spirit that I set out today, to do my daily errands. Gloom and doom dogged my footsteps but I told myself that at least it wasn't raining. No sooner had thought that, a bird flew overhead and I felt a splat on my coat and hair.
On top of the gloom and doom now came anger. The Furies had nothing on me; they could have taken my correspondence course. And I still feel rather angry. Is there no one who can do without a bottle of wine, a pack of cigarettes or a couple of beers at their local bar? Could they not take a few short minutes to go online and buy an e-book or print book which will help to make a difference to thousands of children and their families?
Too much to ask?
I'd like to thank those who have already bought Slushy Tourette's by David Lewis in either form. For anyone else who would like to buy, please go to either of the websites below:
smashwords.com for the e-book
lulu.com for the print book
More information about DMD can be found at www.harrisonsfund.org or go to http://http://www.harrisonsfund.com/muscular-dystrophy-video/