I have been looking through favourite collections of quotes and seeing which I feel to work on, preferably by using Picasa to type them over an image. This takes less energy than the Letraset I sometimes use, which can be a bit stressful when it’s a long quote, as I have to guarantee keeping my focus all the way to complete success – hmm, tall order at the moment, as I am stiff and achey from pinging my intercostals dragging the bin out [reminder to self, phone the disabled bin support line!] and not the full wattage as the painkillers make me clumsy, almost dyslexic… So, ‘work with what I have, how I can’ is the mantra for this week.

somewhere else

I had a few difficult decisions, regarding spoon priorities… I was feeling quite shabby by the time I finally had a shower, but unless you’ve been there, you really can’t imagine how much energy taking a shower drains from your daily quota. I wanted to cut fabric and I needed to make space for the last two loads of  boxes from Flat 4 and I should have done more work on a charity application… meanwhile I was getting lots of questions put to me about arrangements, which due to fibrofog felt very hard to answer! How do we make decisions when everything feels almost equally pressing, and there simply isn’t enough energy to handle our affairs? For me, this time, asking for, accepting and rewarding/valuing the help of my community/ circle of friends. Looking for the shared gain, and trusting the boundaries. I simply couldn’t have done this a few years ago, being disabled physically is teaching me a lot…

I had been planning my move since xmas, and had enrolled a lot of friends in helping me. [I am very lucky, but I have also worked very hard on my trust issues to be able to ask, to give what I can and to be able to hear yes or no without it altering the friendship!] I also did what I could to lengthen the process and plan it, in terms of considering whose skills matched what task etc. I only had one major mistake {sorry Sam!} and friends coped with me getting a bit stressed very well. Boundaries are really important – if someone does something from obligation, it gets tiresome very fast.

It’s funny, because in Daoism the idea is to avoid choice, to be so aligned to the flow that a path seems lit before you, but one of the things I did was offer some people lots of choices and some very few! The guideline was thinking hard about what I know of how we work together, and all the skills and resources available. I have a few friends with chronic pain and/or fatigue issues, and it was one of those friends who drove a borrowed van for me, and I was trying to persuade him to take money for a takeaway [to make up the lost energy, so generously given] and he ended up persuading me I would be denying him the chance to be the capable helper! Another friend is very fit but has a dodgy leg, but more importantly has been sanctioned for missing daily signing at the Job Centre because his son was visiting and leaving a poorly 4 year old with a neighbour is not ok really…apparently he should have brought the lad to throw up on the floor, then his money wouldn’t have been stopped. Sigh. Anyway, who is helping whom? Clearly they [and many more] are all helping me. But apparently I am helping by being part of a process where a friend’s self esteem is boosted, and another gets a big box of Approved Food goodies and gleanings from my pantry, when he most needs it. A couple who have been under horrible stress from online trolls for daring to hold their heads up as a transman and a non-binary person, helped me by being the best DIY team you could ask for, and I can only hope that being practical and problem solving things like disassembly and installation made a rewarding change…another friend has helped lots with organisation and packing and being my guarantor – she is now getting my lovely bike at a very bargainaceous price, which makes us both happy… there are lots more exchanges going on, some obvious, some subtle, some barter for art has been involved too. A friend who is very ill sent me the loveliest box of treats, which helped me feel in contact when I had no internet access and then when she was having a rough time, I was able to be supportive.

‘Fair exchange is no robbery’ is a maxim I was taught very young, interdependence as part of community self-reliance as an activist and then when I read up a lot on Daoism I was given a new take on it. ‘Ming’ [sorry, no idea how this ming is pronounced] is enlightenment where the interfusion of all things becomes crystal clear in the inner vision, that we are all part of the universe, all atoms of stardust endlessly recycling in more or less aware states…


From a Daoist perspective, things like moving can be lived as a community event/ process/ happening. This time I have been privileged to experience it that way, the best of all possible outcomes for someone with chronic pain and fatigue…

All these giftings/ barters/ supports have made think hard about  how the British government/ the Conservative DWP policies are failing so badly at respecting disabled people’s role in the community. We are seen as valueless scroungers, to be removed by callous cruelty and heartless persecution. The NHS is being dismantled and services are being cut, while Tories trumpet that  disability and health issues can be ignored because we make no contribution to society. There are disabled MPs, the Prime Minister had a disabled son [for whom he claimed every benefit possible] and the minister for the DWP dropped everything for 6 months to be with his wife facing cancer. Yet all this brings no compassion – Stephen Hawking, the scientific genius, has communicated his concern that other people with Motor Neurone Disease are being left to die, we know people are being pounded into serious depression and suicide by the policies…only an election where these immoral fools are ousted will help.

And yet, in my own life, I feel more valued by my circle [more of a wobbly star!] and part of a community via the internet, than seems possible with that in the background of everyday’s choices. [Given, that were I able to apply without fear for upgraded benefits, I could have paid for the whole move…] People at the sharp end get what abundance and community are, enough is as good as a feast, and when you share, everyone has plenty. They know they are part of a whole, when they are not being beaten into the ground by the propaganda the media have been recycling straight from the Government benches, the pernicious belief that some people are worth more than others, and only some skill sets count. If you can’t feel when things are wrong, if you can’t respond to what is, because you are blinded by political expediency, you have lost your humanity. And how can they not see?

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