Monday, 7 June 2010

What a week!

Quite a momentous week, one way or another. Which explains, I hope, my longer than usual silence. Zoe, our friend who has ME, was taking her quiet week away in the Mill barn on the far side of Grove - and so on Wednesday morning I took to the electric wheelchair and together with Jess we crossed the estates and Jane let me in. I spent a pleasant quiet hour chatting, looking out on the gurgling brook. It's downstream of the mill itself where Mandy and Charles have recently installed a turbine to generate electricity.

Then it was an early start on Thursday. Bryan was going to drive me to London; Jane was off to Ammerdown near Bath for a couple of nights with her good pal, Shelley. Our family had decided it was time for us to get used to respite, and so they took over my care. We were on the road by 8.30, and rolling into Dean's Yard, Westminster, by 10.30. We were on the way to the launch of the Resistance Campaign organised by Not Dead Yet, Radar, and Care Not Killing Alliance. It's basically a campaign for equal rights for the disabled and terminally ill, including legal protection for the end of life (
 The conference room was full for the afternoon session, with scores of disabled people. Baroness Jane Campbell, the remarkable disabled campaigner, introduced the whole thing, and Peter Saunders showed the beginning of CNK's DVD Disabled People Speak on 'Assisted Dying' which features six people with different conditions, including yours truly. You should be able to get hold of one from Care Not Killing, though the details seem have disappeared from the website for the moment. Sorry, my mistake: it's on the Resistance Campaign website (Home page) with a picture of the dvd and Click here for your free copy.

Professor Ilora Finlay, palliative care consultant in Cardiff, and patron of the MNDA, was there too. I was pleased to meet her, not least because she's written a commendation for I Choose Everything. She was very polite about it. She is altogether an impressive and lovely person. We left just before the group discussion session, in order to avoid the worst of the traffic. The temperature readings on the hoardings ranged between 29 and 23º. It was certainly hot. Back home, the Manchester mob had arrived.

And so began my initiation into respite care. I must say my carers did a great job, undressing, exercises and dressing in the morning, toilet duty, and even taking my chair out into the garden so I could sit out. The beautiful weather helped, of course. It was like being on holiday. And I think it was for Jane in Ammerdown too, though being me I fear I slept better than she did.

Saturday was quite a day too, as we had some party: something like 35 adults and 12 children to celebrate our daughter-in-law's birthday. Friends and family came from all over: Sunderland, Sheffield, Sussex, Manchester, London, Llandudno... The garden and house were humming with life, laughter and conversation. It was such fun. As you'll see, Jane came back shortly after the first visitors arrived. And the weather was perfect - warm but not too sunny.

Then it was Sunday. The Manchester family left, and then it was time for us to go to church - and my first preaching for more than a year. I wasn't exactly nervous, but wasn't sure whether I'd be intelligible. However with some help from powerpoint and powerful grace, it was all right. I was talking about meeting God in the desert. In other words, when bad things happen to us or we find ourselves in a bad place, that does not mean God has stopped loving us or is absent.

By the way, there's a petition on the Resistance Campaign, and a request to write to MPs asking for their support. Please look at the website and tell your friends about it. As Baroness Campbell said, for disabled people it's a matter of life and death, literally -


  1. Meeting God in the desert leads naturally to "Footprints in the sand". Glad you had such a memorable weekend!

  2. I was given a picture of that when I announced my diagnosis.