Care and Care alike
For anyone actually following this blog you will be pleased to hear my ceilings have now been reinstated where they were hacked open to make way for a new boiler. All painted and looking good as new. I am now waiting for the men to come back and make holes in them again. Don’t ask…
June 13th to June 17th was going to be a big opportunity to promote Curse in in Verse and Much More Worse. I was exhibiting the book at the Greenwich Carers Event for Carers Week. The Theme for this year has been ‘The true face of carers’.
The Mayor and Mayoress of Greenwich came to open the Event and I had a long chat with them about caring and Huntington’s disease. They seemed lovely people and seemed interested which was nice. The place was filled with people although only about three of those in attendance on opening day seemed to be carers. The bulk of people were from the organisers. Looked good but in terms of achieving the objective I highlighted to the Mayor and all who would listen this..
The ‘TRUE FACE OF CARERS’ was reflected insofar as the faces were conspicuous by their absence. The True Faces are behind closed doors; trapped at home; caring.
Day two was going to be better. I turned up and parked myself at my stand. No sign of the organisers. Another exhibitor turned up and we had a long chat. Eventually the media team from Carers UK turned up and took some pictures and wanted my fellow carer to read a bit of her story on camera but she was too nervous to. The ladies from the organisers asked me to do the reading, which I did, and then realised that was probably not a good idea. They were hardly likely to want me on everything that day and I had wanted to try plugging my own book. Nevertheless, I managed to get a recorded interview in but haven’t seen anything on-line as at writing. With so many events going on that week I expect my own offerings will make it to the cutting room floor. With my luck I will make the video for a few seconds telling the story of a fellow carer. Buggerrrrrrrrrrrrrrr
One good thing though was I managed to get a bit of coverage in the local press which, with the advent of the internet, leads into all sorts of other sites. I’m sure when people search for Carpet Cleaning in Lambeth they expect to see an article on poetry flagged up. All makes good publicity!
http://www.homecleaninglondon.co.uk/one-off-cleaning/lambeth-north-london-se1.html (Came up in the bottom right News Streamer lol)
I am still waiting for an actual review to be done by Joe or Josephine Public. Nothing yet but I did get very excited when Jimmy Pollard wrote on his Facebook Page the following:
‘My friend Trish Dainton cared for her husband with Huntington’s Disease. She’s written a book of poems about living with HD that will knock your socks down. Here’s a brief article about it and a sample poem! This book is more than excellent in capturing so many aspects (actually nearly every aspect!) of life with HD, as the person with HD, the carer or the person who has to engage with the health care systems all over.’
Jimmy became a friend of mine on Facebook when I wrote to him asking if I could quote from his book ‘Hurry up and Wait’. The book was fundamental in helping me care for Steve. It gave me practical advice but, more than that, it helped me empathise better with what Steve may have been experiencing. I can’t stress how important Jimmy’s book was to me at a point when I was working totally in the dark trying to cope. To have Jimmy speak so kindly about my book is such an honour!
If you have picked up on this blog whilst searching on Huntington’s disease, do yourself a favour and get Jimmy’s book.
Last but not least…
This weekend I ticked off one of my things to do in honour of Steve’s memory.
When drawing up our last will and testaments, years and years ago, me and Steve requested trees be planted in our memory when we die. At the time there was still a school of thought that we might go together. Well, it’s fair to say I am still here for a little bit longer at least and I have had a tree planted in a wood which has a little wooden plaque with a message and his name on. I went to see the woodland on Sunday and it was a beautiful sunny day. Birds singing; cows a mooing; lambs a bahhhhhing; butterflies a fluttering. A lovely setting and tribute to a lovely man. I may take Steve’s ashes there at some point. We shall see…