By Gaynor Madoc Leonard, 2014-10-17
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/
By Gaynor Madoc Leonard, 2014-10-13
Over the past 10 days or so, David Lewis and I have been marketing quite frantically on social media, trying to sell his book of poems, Slushy Tourette's.
This book, both in e-form and print, will benefit Harrison's Fund, a member of the Duchenne Alliance. Neither David nor I will gain anything from the sales, apart from a sense of satisfaction. A small core of supporters has both bought the book (sometimes several copies) and helped spread the word via Twitter, but we need more sales! Until 15th October, lulu.com is offering the print version (and all print books on its site) at a 25% discount with the code EATYOUREGGS. This is a fantastic opportunity to buy the book either for oneself or as a gift; it would make a super stocking-filler at Christmas or a rather wonderful and rather different wedding favour.
There are so many demands made of all of use these days, from umpteen charities, but this one is special. Duchenne Muscular Dystrophy affects 1 in 3500 children (almost always boys) and they are unlikely to live beyond their 20s. Slushy Tourette's gives people the opportunity to do some good and to get something for themselves.
Like many people, I have charities which I support regularly and I tend to ignore the rest. And, like other people, I have problems in my own life which make it hard to care as much as I should about those in trouble, even if they are in worse straits than myself.
David is dying; he has a terminal illness and is in constant pain. I'm not sure what is worse than that. If I'm honest, I am feeling extremely tired; my father has severe dementia and I have scarcely seen my own home this year, being obliged to help my mother. The stress has affected my own health. In addition, my oldest friend has had cancer this year and, because of my situation, I have been unable to be of any direct support. That has upset me greatly.
You might say, "Yeah, yeah, yeah, Yadda, yadda, yadda. We've all got our own problems". Indeed we have and many of them are far worse than mine, but if David can pull himself out of the slough of despond and do something positive with what remains of his life then the least one can do is log on to one of the websites below and spend just a little money (the cost of a fancy cup of coffee for the e-book or a bottle of very ordinary wine for the print version) to bring some hope to thousands of children and their families.
Just do it.
SLUSHY TOURETTE'S by David Lewis
e-book at smashwords.com
print book at lulu.com (with 25% discount through 15th October with the code EATYOUREGGS)
By Gaynor Madoc Leonard, 2014-09-26
About a year ago, I started following a man called David Lewis on Twitter. In fact I bought chocolates from him; chocolates which he had made himself and which he was selling in order to buy his daughter a laptop for university.
From his tweets, I learned about his terminal illness, his troubled childhood, his extraordinary determination, humour and humanity.
David was expected to die by spring of this year; all those who care about him (and there are many of us) have been very glad that so far he has defied the prognosis, though not without considerable pain.
By following him on Twitter, I became aware of Harrison's Fund. Harrison is a young lad who is suffering from Duchenne's Muscular Dystrophy and his family is determined to help find a cure. The disease affects 1 in 3,500 children, almost always boys. Sufferers generally do not expect to live beyond their 20s, although there are exceptions.
David has been writing poems for a time and I know that I was not the only person to suggest that he publish them. A kind and generous man, he decided to do just that and give all the proceeds to Harrison's Fund.
Somehow or other, I was appointed editor-in-chief and I enlisted the support of my own excellent editor, Eifion Jenkins, to help. I also contacted a friend, Natasha Kinley, who, as well being a graduate of the Juilliard School in New York, is a talented jewellery-maker and artist. She has produced lovely artwork for this book and any subsequent books.
I mentioned David's troubled childhood. His father was alcoholic and abusive and was eventually sent to prison. David was determined to be the opposite of his father and has done his best to counsel and help troubled children during his career. Despite all the problems that he's had, his poetry speaks of love and joy. Above all, it is sincere.
David's book, "Slushy Tourette's", which is dedicated to his best friend (and tower of strength), Angela Spencer, is now available as an e-book (for any e-reader) from www.smashwords.com . You will also find it at Amazon, Barnes & Noble and all the usual suspects. It will also shortly be published on www.lulu.com as a print book, again obtainable directly from lulu or from other online stores. All profits will go directly to Harrison's Fund; neither David nor I will benefit financially,
At the top of the page, I've quoted St Paul's words from his letter to the Corinthians. Other translations use the word "charity" instead of "love" but they are interchangeable, certainly in the case of David Lewis.