I am in Heysham with my sister Ros and her husband Alec, Paul and Pete I am watching the sunset over the water. The rays of the sun are gleaming like a road from the beach to the sun. There is dark, heavy clouds like MND as the sun goes down the fringes of the clouds light up like coals in a fire.I hope am alight when my body goes down! I love the light in late summer. I have a ruby red dahlia and the sun makes it glowing,incandescent hue. Thank you Molly and Mindi.
I have been ‘clearing my desk’ I realise I have too many objects, clothes,books and files from my life. I wish had done this years ago. Its bittersweet when I am chucking my memories in the black bin bags. Photographs of friends who have died or forgotten. Dissertations which I sweated and laboured for so many hours in the middle of night. Journal articles which is so specific …’family interventions with home treatment for psychosis’ , no one would read it now. Gifts from special friends or boyfriends who are tat to others. Clothes I can’t wear as I can’t do button and zips. DVD and Cd s which are online, technology has carried me on.
It’s so hard to clear my mess of my life as I can’t hold my head up and my knees are buckled and I fall if I don’t hold furniture. I am breathless and my heart is pounding to get sufficient oxygen. I get very tired now but I still living with MND, I went to a Thai temple in Lichfield last week with my friend Ken and my son Joe, to meet the monk who is chanting at my funeral. We talked via my iPad for over an hour, he told stories of the Buddha to my situation. He then chanted, he was so enchanting. He explained the funeral and blessed all of us, it was very important to me to meet him.
I am looking forward to go away in mid September with Ruth for her birthday beside the sea. Ruth is buying tickets for a Congolese orchestra in the Bridgewater Hall on September 11th … You should go, it’s brilliant !!! I want to go to Liverpool Biannual Art Festival and I want to go the WW wards at Dunham Massey. I have got a painting to frame and I have another picture to paint for Sam. I have rest days and listen to the radio while a doze and see Ava and the young ones go in and out. Soon the rest days rest will turn into normality every day. I have mentioned carers to the GP. I hoped I wouldn’t go down that road, I wished I would die before my hands are redundant … You use your hands for everything !!!! I have a clear mind and still stubborn and I can choose what I can accept.
Carry on with the ice bucket it’s raising thousands for MND research but before you do it talk about MND before you get drenched !!! Thank you for getting wet it makes a lot to me..you can see me and Ruth,Angie and Pete and lots of people who are joining in to make MND awareness on Facebook.