end of year blog

This blog will be changing back into event and building review mode next year but here is one last flash of me talking about myself before the year ends. I need to go power nap before the hogmanay beach party now zzzz

2010 for velocity-m:

Inside? I am calmer, stronger, more likely to get to sleep without drugs and slightly more accepting of working within the limits of my condition and the consequences. I have buried the fury so deep that it'll come out through the soles of my feet as flames. It also leaks out in my dreams.

At least, I was ok on the serenity front until cabin fever collided with extended isolation from friends I used to see/ work with regularly at the Big Red Door, failure to get either novel to end properly, the realisation that for all the artwork done none of it was what I had planned to do so I had nothing for five big exhibition opportunities - again, hit head on with outrageous family behaviour and an unbearable need to dance, swim and fly. Right on the start of one of the toughest times of the year for rubbing my limitations in my face (second only to summertime) - the festive season.

Career(s)? Career-wise I got some exposure on the literary/ publishing and cabaret circuit but didn't get a foot in the door with the international publishing world. The city's literary salons are still being held upstairs so that precious but casual schmoozing still doesn't happen for me, three years on. But there was progress! I was one of the guest authors at the City of Literature's Story Shop at the Edinburgh International Book Festival and also appeared at one of the new EIBF Unbound cabaret nights, with the rest of the Writers' Bloc authors. The farewell cabaret of the Big Red Door and my friends' wedding reception cabaret out West were two other favourites. I was also one of the writers in a new event: 26 Treasures at the V&A, which made me feel very metropolitan even in absentia. To top that, I've started recording properly with a musician friend and the results are already awesome.

I only write because I can't use my creativity in art college or a studio or up a mountain or out at sea, but words don't fully scratch that itch, they really don't.

Challenges? Getting through every day and every night at this level of illness, and trying to do it without looking so ill or showing so much pain, which unfortunately causes unexpected problems in itself when folk think I'm fine, or just more fine than the folk who complain more loudly, but that's going to stay the way I do it for the sake of my pride. It's actually quite hard not to scream or punch or throw up in public sometimes, but you should not be able to guess that. Scarlet lipstick helps. A nurse told me that but I disregarded the advice for years because she'd also advised me to get a tan to make me look perky.

Firsts? Lots. A few to mention here include The Hat for Musselburgh, articles for The Guardian, Portobello Regatta, being filmed reading at the book festival and busking on the prom during sunsets. I fear that getting out to the island may have to wait for next year now but I finally have options and methods.

Any regrets? Yes. One enormous issue that could, unlike the insurmountable problems in life, be solved with just the odd text/ email/ call. It's strange but despite me knowing almost only hippy and outdoorsy people, I find it almost impossible to get invited on so much as a short car trip or get a shot on the back of a bike or even to get invited to a bbq or picnic, let alone be included in a festival or camping trip. I think I have been ill so long and absent so frequently, that I've become invisible even when I'm right there, or maybe significantly it's my outdoors identity that's gone. I'm not kidding. It leaves me feeling as though ME or arthritis are related to leprosy. Is it the awkwardness of the wheels, suspicion that I/ they wouldn't be able to manage out and about? I have definitely lost my belonging with outdoors people. Bring it back.

Hatches, matches and dispatches? I made it to only one of the three splendid weddings on my calender but there is footage to prove it. There were no births or deaths in the family, but some happened close by. There were also noticeable births and deaths of friendships, which is quite unusual.

2011? Mainly the outdoors stuff, see above... I have several other challenges lined up for January, which is not like me at all as I prefer to think of things to get finished in December rather than thinking of things to start in January. But I'm not going to mention them here.




music:
the prodigy vs white stripes: blue voodoo people DJ Zebra
weird attractors: adrenaline soup

and a Merry Midwintery Festive Tinsely stuff to you all :-)

~ hands out kisses, hugs, roast potatoes, gin~

slainte!

son et lumiere

Had the strange but inspiring experience of recording two of my stories last night. What a time to have an irrideemably dry mouth. Do you know how many sounds your mouth makes other than forming your accent's version of the alphabet when faced with a very sensitive microphone and a silent room? I do now. And as for all the breathing I do, well, tsk.

I'm intrigued to see what T does with the tracks. He has excellent gadgets and is dauntingly creative. I don't mind re-recording fluffed words or sections to polish it, but I will resist getting too picky, honestly. After all, I can't be trusted not to change the, er, software thingie, to do a helium voice for laugh (not my fault, I've already heard the Dr Who version of me) but more relevantly I don't think anyone can be competely professionally remote about the way their own voice sounds to them. I was genuinely surprised to hear that I don't speak too fast and am not all slurred. Inside my head I'm verging on incoherent. I am happiest just not talking, but indoors I tend to ramble. Who'd have thought cabin fever/ claustrophobia/ I hate ceilings affected the gob.

My first ever experience of public speaking was when I was little. I was chosen for having a 'nice voice' and being unlikely to swear (in English anyway) but no-one anticipated what would happen to my pace when placed anywhere near a microphone. I've got a recording of one of those ancient onstage speaking experiences and I sound like an eight year old on speed. 'Nice voice' aye, maybe, but only if you recorded me and slowed it down to walking pace. In retrospect I am not impressed that the grown-up response was not to teach me to BREATHE, or at least pause at punctuation marks, but instead to just tell me I talked to fast when near a mic to be understood, so that was that for me and mics. That approach to child development might be a Calvanist thing.

Trouble is, being let loose on a musician/ sound engineer has me raking through my short stories/ performance pieces just boggling at what I could do with words now. It was already happening yesterday, which is possibly why I kept getting ideas instead of sleep all the way to the sleet storm at 5am. Of course, given the angle of the boggle, all the words had music inside them.

ME/CFS research

(with thanks to the editorial team of the edmesh newsletter)

Researchers from the University of Dundee have received funding for a clinical trial of vitamin D in people with ME/CFS. Their primary aim is to see whether giving oral vitamin D supplementation improves the function of blood vessels, notably the stiffness of the arteries.

The study is about to begin so aims to recruit fifty people with ME/CFS from around Scotland. Participants will be asked to come to the unit in Dundee on five occasions for a variety of non-invasive tests at eight week intervals. Half of the patients are to be given placebos.

If you are interested in taking part, are well enough to travel, and would like more information, please contact Dr Faisel Khan by post or email:

Dr Faisel Khan
Reader in Vascular Physiology
Vascular and Inflamatory Diseases Research Unit
Ninewells Hospital
Dundee
DD1 9SY

f.khan (at) dundee.ac.uk

ping!

Hello Scotland.

How does it feel to know you might fall with every step? How does it feel to stumble, slip and crash to the ground if you attempt the great outdoors? How does it feel to have to cancel most of your outings/ guests/ meetings and plans over the past fortnight? Have you felt like a prisoner in your own home not knowing when you'll get out again? Felt useless to humans and angry at others not helping you (eg fixing your boiler)? Any resulting disasters on the home/ education/ deadline/ work/ social/ romantic front?

Welcome to my planet!
I prescribe a short treatment of thermals, crampons and greenhouse work.


Today's rudeness was brought to you via a flash of genius from my virtualflatmatefellowwriterartist, Emily. But don't kick her, kick me :-)

today in ice bullets

• scooter is ready in case of an early spring
• Beth's homemade gingerbread men just in time for breakfast, mmm
• entire lane sanded by Colin before I got up - woohoooo
• compacted gritted snow on top of hard iced snow - my wheels can sorta manage this
• they really can
• I'm out
• just in time for sunset
• over an almost glassy, syrupy sea
• not a breath of wind
• with a huge bag of bird feed
• a green sunset!
• forgot gloves, pah, I am hardy
• scooter really can manage this, omg
• I've been released back into the wild
• FREEEEEDDOOOOMMMM
• crunchy zoooooom
• (photographs, photographs, photographs)
• crunchy zooooooooooooom
• (feed birds, feed birds, feed birds)
• crunchy zoooooooom
• oops
• what was that?
• why have the lights gone out?
• scooter has died
• RIP scooter

There are two emigration parties and three boat building sessions on my calender for this week. I think it might be something to do with the weather.

LET ME OUT

Too late, alas, to take pressie to my virtual flatmate for her grand birthday (she was asleep again but HAPPY BIRTHDAY EMILY!) and too late to catch migrating neighbours, yet still in time for daylight, I was THIS CLOSE to getting down to the beach to sit in the snowy peachypink sunset with wraparound seascape.

My scooter got off the cleared section of pavement, onto the snow for half a metre then stuck fast in it. It would have taken someone else under two minutes to walk to the shore from there and probably only ten minutes to shovel the whole pathway clear it of snow. Me, my scooter and my neglected camera eventually reversed out of the snow and back into the house.

I will not cry in public
I will not cry in public
I will not bite passers by
I will not bite passers by
I will not burst from cabin fever
I will not burst from cabin fever
I will get into that beautiful snow
I will get into that beautiful snow
I will not steal a skidoo
I will not steal a skidoo
I will steal a skidoo
I will

Gave up on beachy wheely freedom and decided to be grateful for the fact that after sooo seated long I am able to cover some (smaller) distances with assorted walking sticks. The biscuit tin is mine mwuhhhhaa. And taxis can get into the lane again!

Tonight's good news from an even better source is that the Botanics have apparently cleared some paths of all snow and ice. Most sections of the gardens are open and passable even to wheelchairs so if you can get your chair into a vehicle and get out to the Botanics... go for it!

provisions

Answers come to those who wait!

The Guardian Edinburgh today covered the offer of food available to housebound vunerable people: http://www.guardian.co.uk/edinburgh/2010/dec/03/edinburgh-snow-emergency-supplies-elderly-disabled-colinton

Vulnerable locals affected by the severe weather can have emergency supplies delivered to their door. The city council said it realised the freezing conditions have made it "almost impossible" for some people to get to shops to get food. Parcels containing UHT milk, tinned vegetables and fruit, teabags, biscuits, tins of corned beef/ham and other household goods will be available.

To qualify for this assistance the person must be elderly or an adult with significant disability, not currently in receipt of a home care service or have no close neighbour or relative living nearby who could help. The items are coming from the local Tesco in Colinton and the council's own staff are helping out with deliveries. Volunteers are also on standby from the Red Cross.

I woke to find that the pavement outside my house has been cleared, and there was also an offer by email to come round and do that from a friend in the village, which I may take up if we get more snow. I've just watched the funniest footage of my neighbour's horse playing in the snow. And my nearest neighbour is back from hols so its all improving here. I'm not sure a taxi could actually get into the lane to collect me but now at least I could get to the taxi if it did appear. For added luxury I'm hoping the path down to the prom is cleared soon, but that's just for fresh air, a sea view and sanity rather than neccessity.

These are my shopping hints for today. Even if the snow clears get them now and be ready for next time:

http://www.yaktrax.com/walker (thanks Charlie)
http://www.outdoorwarehouse.co.uk/index.cfm?action=shop.detail&pid=DDC2CD88-FF29-08BD-48EA8C02A3D2B051&ref=gbase

As I glance up I see a few new thick flakes falling... and a sunbeam! An actual sunbeam. I have to move to the windowseat to sunbathe, back in a minute.

I got to sleep at 6am this morning. Be impressed that I'm awake and alert(ish) in the afternoon. I don't have the heating on and apparently it's quite cold today but I'm so boiling hot I may have to open a window to get a cool breeze.

*** Update***
Twas not a mysterious pavement clearer, it was Andres and Nik of Row Porty! I am very chuffed.

four letter words for snow

My windowsill snowman has leapt to his demise and broken both of his carrots.

I finally saw daylight today. I have also been brought provisions by the international expeditionary force of Edgars, but the proffered chance of an old-fashioned push down to the beach for a sunset photography session wasn't going to work because the snow is deep and sticky and the path that had been cleared yesterday was long gone. Perfect for walking in - if you do walking well. For some reason I thought the weather was on the turn yesterday so hadn't expected another level of it over everything today.

I was racking my brains wondering why there was such a need for local DIY path digging last year when I remember scootering out and about by myself, but of course it was when there was hard-packed snow, very slippery (for feet) and I could drive across it. Grit actually made it much harder to move by breaking up the smooth surface, but it looks as though too much grit isn't going to be a problem this year. I couldn't help with the path shovelling then but I did scooter out with flasks of soup and toddy, plus cake, to fuel the folk who hadn't already taken their shovels to the pub.

I see the bird feeders haven't been touched, nor has the hanging fruit and nuts, which is worrying as these back gardens support a lot of tiny songbirds and flocks of brightly coloured wee things that don't look fit for winter, as well of course as hefty pigeons, chunky blackbirds, enormous magpies and the odd gull. Between them they go through a feederful in under a week on a normal day so I was expecting to have to put out stuff on top of every snowfall this week. Please don't ask about Henry.

Tomorrow is apparently International Day of Disabled Persons. I am not sure what that means or what will be done for it. I'd have done a Lady Godiva down the prom to show that disabled does not mean not sexy, or done some storytelling in town as part of a festival, or even actually asked what other people are planning to do as displays/ awards/ demonstrations against inequality/ targetting busineses taking the piss or whatever, but erm, the snow is too deep for my puny wheels... If the city was planning a parade of the top Scottish disabled athletes, writers and business people down the Royal Mile I didn't hear about it. If the plan was instead to give free chocolate and ski fittings to every wheelchair owner I didn't hear about that either. And what exactly is disabled? I didn't check the criteria. The most disabled people I've ever met (in my gobby opinion) were the woman with no conscience and the man with no empathy and the many I've met who seem to be too lazy and moody to breathe. So don't ask me what disabled is.

I was tremendously excited by a date a few years ago that brought reasonable disabled access into public buildings as a requirement by law. I sped up the High Street the following week sure that every shop with steps would have ordered/ built a wee ramp from our local hardware shop. Not a thing had changed, and it turned out that to activate the law I'd have to actually make the requests/ threats/ legal action myself. Well I could have done that before, if I had the time and the energy and the alertness during office hours.

OH! I've just remembered something I was supposed to take some sort of action against. The city offered a buddy system for those who were housebound. I applied and was rejected as in their rules ME/CFS wasn't an eligible illness even if you were actually bedbound, and nor was arthritis if you also had ME/CFS as it could just be extra ME/CFS. Oh really? So who exactly gave them this advice? Let me take a wild guess. I am now hoping that the local services offering free help for the digital TV changeover haven't used the same fecking dodgy source of disinformation because their TV adverts do specify 'eligible illnesses only'.

http://www.bbc.co.uk/blogs/ouch/2010/12/un_international_day_of_person.html

sooking the air

It wasn't quite the 'snow community laughing and shrieking in the sunshine' blast of fresh air that I'd imagined. It was 2am, as silent and lonely as a shoe, all traces of humans and other wildlife concealed beneath the newly fallen snow, not a breath of wind, and a completely magical landscape of sodium glow orange snow under the stars. I made a little snowman on my doorstep, put him on my windowsill with carrots for arms (I'm running low on vegetable options) and went to bed. Was zombied flat out till 5pm but have managed to sit up now to scoff the concents of the fruitbowl. From the look of the pavement (and blogged photos) there has been much action out there, but I haven't seen another person for ages, not with the hours my health is currently limiting me to.

How are other wheelchair users managing in the snow? Snowchains on tyres, scooter ski attachments, snowplough attachments, free taxis, priority help clearing paths and roads from the council roadcrews? I suppose the latter would only be on offer from cities not bankrupted by tramswindlers. Is there any infrastructure in place? Is there a contact to phone to request assistance - even paid-for assistance? Or to offer assistance to others? Is it even on the winter provisions list? Do doctors in wheelchairs just not do housecalls at this time of year, do lawyers in wheelchairs hand their clients to their colleagues, politicians miss their vote, are banks run from home, are hospital visits all missed?

My neighbours cleared my bit of pavement last night so in theory I could have got one of the winter tyre taxis (the others would never get down the lane) to the supermarket then into town to the City of Literature Salon to mingle with potential business contacts up from London, but the salons are still being held upstairs. Presumably none of the important visitors were wheelchair users.

In other news my new dehumidifier is my favourite toy. It has sooked several litres of moisture out of the air every day in the previously at-risk-of-damp back room, which is both awesome and disturbing.