20 Dec 2015

Post 407: Another Story so far post.

Again people have been on my case(in the nicest possible way), people like my counsellor Cathy in the middle here trying to get me to start this again. Perhaps my protestations haven’t been loud enough? Apparently this is something I actually can do, so with my pisspoor ‘get on with it’ attitude here I am again. I wish I had more encouraging words for people with disabilities, all I can say is that most survivors I have met have not been as f*cked up by this, so that’s a good thing. I know I have been lucky to have a place to live thanks to my folks letting me live in this house and an income independent of them courtesy of my former employer giving me a disability pension. My friend and housemate Frenchy has also been the lynchpin that allows me to survive. I couldn’t afford a carer, so we appear to have created a system that works – he looks after the house, but has his own time and does my evening meal and family friend Gary does my morning routine (which Frenchy and I split the cost of, it doubles as value rent for Frenchy – I hope it’s a mutually beneficial arrangement), Frenchy interviews and trains a stream of overseas volunteers (workaways) who live in the house and help us on a short term basis – they get a decent home from home and some laughs, we hope. They are a breath of fresh air and stop us killing each other which I’m told is a housemate thing that happens the world over. This has given us an extended lease of life because, I can’t lie – since my stroke, I can’t think of a good reason people would want to be friends with me – I was always the fun friend before this, I can’t ever be again. This says something about my friends and family – they are the heroes in all this. My subsistence existence continues to be about doing physical training (physiotherapy) four times a week
which gets paid for by the kind donations of my friends and family to the Dom Pardey Trust, which I can’t touch. This was set up in 2006 by my college mates after they saw how f*cked I was, and they realised I would need help for the rest of my life. It’s a proper charitable trust administered by my old mates in their own time, and they make sure all the donations get spent on the right things. The trust bought my wheelchair in Late 2007 – my friend Isabel ran a triathlon to raise money for a treadmill a few years ago. The rest of my own money gets spent on survival, particularly on staying in touch with my friends and family and making them feel how grateful I am and getting us tickets for big London gigs.
It means I can do something with my friends and gets me out of the house. Planning the logistics is a fulltime job and is easily my #1 stressor.
I know I’ve said this all before but reading my blog to stop myself repeating myself isn’t going to happen. My eyesight and concentration span don’t get better.
I know I’m lucky to be able to do this much, I’ve heard it enough bloody times. I do what I can reasonably to survive and if I have any helpful words to anyone disabled it is not to alienate your friends and family, bend over backwards for them – these are the only people who will help you. Be prepared to spend all the little money you have and what little energy you have and more entertaining them when they visit, or taking them out to events and lunches. Sure, it is sometimes ok for them to be a shoulder to cry on, but they’ll get fed up pretty quickly, I’ve seen it happen. People don’t like depressed people even if mental health is a big deal these days, people get tired. They can say ‘I understand’ or ‘I can’t imagine’ till they’re blue in the face. Rather than go on, I wrote most of what I was about to write 5.5-ish years ago in this here post probably Read it and w... (er, be indifferent).
If they could do my type of stroke to hardened criminals doing life, it’d save the country a fortune! Because this feels like being given a life sentence, and for no crime.
I wouldn’t recommend writing a blog to a lot of people. Maybe to people who can deal with being ignored and criticised? Otherwise, just manage facebook. Even then – be careful. Sticks and stones may break my bones but words can break hearts.
It would be remiss of me not to mention my drinks,
the fact that they’re called xmas drinks is purely coincidental. In fact I might call them ‘anti-xmas’ drinks next year. I won’t have any mad paraphernalia like mock-ups of Santa in an Orange jumpsuit about to get decapitated or crippled reindeer smashing the sleigh into a tree, I like the way Christmas is just an excuse for people to do things. I detest all the fake happiness, but our latest workawayer, the lovely and frankly amazing Colby from California
has forced me into watching a couple of American Christmas movies – you can probably guess how that went. She went back to California this morning, saying goodbye brought tears to our eyes. I suppose the good news is that she gets to go back to glorious California and Marge, who has been like a mother to Colby and I,
will be back tomorrow. Anyway – the December drinks – they were awesome. I probably shouldn’t organise them on the Thursday every office party seems to be on, but it is nice to be the excuse people use to get together. I am an excuse. Often a sh*t one but It’s my raison d’etre.



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