Disposable.-ish

Beth and I came back from Christmas at her folks. I turned the TV on and sat watching the shroud of doom lower itself down the screen. bugger. I remember the last time this happened, we looked around trying to figure out how to fix the problem. Not now. Now, our reaction is, "Ah well lets get another one." When I was a kid a dying TV was a huge deal, where the whole family would try anything to keep it going, dodgy plugs could be stuck back together, lopsided screens, which is what you get if you drop your portable down the stairs, could be loved for their quirkiness, TV's that may or may not come on had their own frisson of excitement. Not now. Ailing electronics are binned immediately, bring forth the successor!
I'm off for my 18th infusion later on today. The infusion, which lets me walk and is ever so useful, only works for 24 days, then the new bloodfire must be implanted! Have you thought of curing the disease? Course not, there's no repeat profit in that. I don't think they've ever got over sorting polio out.
Everything is upgraded constantly, what you buy is technically dead on arrival. Except stupid ideas, which live on the power of loud repetition, until the crap they spout gets moulded into a huge brick of shit fact. We live with shit ideas and dying stuff. Bless. Amen and so forth.
And now, the TV just came back to life. It was either me singing at it or Beth plugging the power cable properly...

Rally

I should have had my infusion on the 23rd December, things were beginning to fail, quite a bit. Then, we went out drinking with Lesley and her mate Nicole yesterday evening. We started at a bar with food at 4pm, this was followed by more bars then more food at 9pm. It all burred into one but I know we had a really good time. Nicole was cool and a lot of fun. Bill turned up, who I've now met 3 times and bought our drinks at one bar, though we saw him in two.
We ended up eating cheeseburgers. I asked for onions on mine and ended up with half a plate of raw onions. To be fair those that made it went well on the cheeseburger. I should have learned my lesson from the morning, where I ended up with an entire thingy of squeezy whipped cream for my strawberry waffle. Great night.

Sun Freeze

I'm sat looking out a window over a sunny golf course outside  of Beth's mum and dad's window. Looks lovely, just right for a nice walk. Until you walk outside. Its fucking freezing. The sort of cold that makes you wonder where the polar bears are at. Ironically, the house is a bit too warm, like living in a bizarre Aesop's fable you can't work the rules of out, but with with nice food.

Gravity.

A few years ago my uncle John told me he'd been in a floatation tank and how amazing it made him feel. I always seem to take time to get to something that I know will help me.
 The last time I made a move I was certain I needed, though I didn't realize just how beneficial it would be, was when I joined an MS yoga class. I remember the first time I walked in. Everyone seemed to know each other. I know now its because anyone with MS that walks into this class will keep on coming as long as they possibly can. The class is amazing in that it gave me, who had lost trust in what my body could do, control I didn't realize I could have.
The room is a no bullshit zone. You do not come to this class unless you are truly fucked. The humor level is high, there's no judgement and everyone looks out for everyone else. This class led to me learning Reiki, which sounds like new age tosh, but is incredibly useful.
I've been doing an infusion once a month, for the last 18 months of Tysabri. I started doing it as, yoga or not, my MS was wiping me out. The Tysabri worked and restored my walking. Its a bit of a head fuck to do, the downside is that if it goes wrong, you are looking at being totally crippled or dead. The thing  about MS is that I reached the point where the risk really didn't seem to matter.
I'm now thinking, living taking the constant risk of an awful end, might be quietly fucking with my brain.
Therefore, I could do with a new way to chill out. No gravity, quiet, darkness and total support? Sounds alright to me.

Bing.

Every morning at 8am or so, a load of junk emails from firms I have no interest in buying anything from, land on my computer. I know they are there as a series of bings go off. Its an electronic invasion of  unwanted consumer nudging, and I hate it. I dislike it so much that any firm that pushes their tat at me this way will never get any business from me, ever.
If I wanted your crap I would let you know. At least catalogues I have no interest in land quietly. I don't buy their crap either, as that is a load of paper I didn't ask for. I know I look like the anti-consumer. Not true. If I want something I'm interested in I'll buy it. I'll look around to find if there is something I haven't thought of. What I can't stand is nudging.
I cant be the only one who hates shit house constant advertising. Looking at BBC News from the States , the video news bits have adverts. What the fuck? Know that the second I see an advert I turn it down the volume by reflex and ignore it, until it fucks off.
Commercials for drugs irritate me. They tell how there going to help the afflicted out, then spend the last half of the advert pointing out how lethal the drug can be. Not only that, the onus is on the sickie to check out how lethal the drug they haven't tested properly is, as if its the sick person's fault if they die trying to sort out a cold.
Why not sell stuff that actually works, rather than factoring in a budget for lawsuits that are inevitably coming?
Oh  yeah, bottom line. My mistake. Bing. Fuck off!

Roses

I watched the Stone Roses documentary as they tried to come back together, difficult, full of near disaster,but they did it. I know I always cite the Pixies as my favourite band and on albums they still are, but there is something about the Stone roses. While I was watching the documentary it took me back to the time before I knew I was ill, when I was at Passfield hall and Dave and I danced to the first time I heard Fools Gold at the Camden Palais. Dave threw himself into the crowd, as was his want, I grooved happily, bothering no one
There are some events that stay with me. I remember watching Konyaanisqasti with Philip Glass playing, Spirutualized at The Royal Albert Hall, one of The Pixies last gigs at the Brixton Academy, Eddie Izzard when no one really knew who he was at the Bloomsbury Theatre, Bowie at the Milton Keynes Bowl, all sorts of gigs.
What brought it back? The Roses. After a couple of years under the MS cosh, I remembered who it is I actually am. I have always worked in entertainment, bands until I couldn't play, stand up, until I knew I couldn't do what I needed, acting  until I knew I couldn't do what they needed.
Am I bitter? Well I have been a bit. It would have been better if I was shit, I always quit when I knew I was doing well but couldn't physically do what I needed.
But, I like to look forward. I know writing is the next thing I get to try. I gave play writing a go earlier in the year and was going to teach stand up then got wiped out by illness so savage I can't really describe it. You'd have to have had it to know, and I wouldn't wish it on my worst enemy. Its actually worse than MS. Tri - neuralgic nerve pain, if you were wondering.
So, onwards and so forth. Even when I know I'm beat for a while, I cant sustain it. The world is way too interesting for that.
This  post soundtracked by My Bloody Valentine, another top band!

Very nice, very nice..

I realised today that Beth and I were sharing libraries on iTunes . I went through and found a lot of music I really liked. Beth has fantastic taste. I found all The Smiths albums, which I haven't had around for ages. I remembered just how much I like them. I'm watching the South Bank documentary from 1987, just after them broke up. One critic put his reputation on the line and said he thought that The Smiths would be remembered as well as The Beatles in 10 years. He wasn't far off. Over 20 years on I still regard them as one of the best bands ever.

Beth and I saw Morrissey a couple of years ago. The crowd went nuts, it was a great gig. If  he reformed with Johnny Marr? Unlikely, but Id go to that gig. 

I shut down any thought of performing and arty stuff pretty much for the last 2 years, since I got into trouble with the MS. I to started doing infusions once a month, just to get back to basically level. Picking up tri- neuralgic nerve pain and wiping it out with very heavy, trippy drugs for 4 months helped but wiped out half the year. If I spoke to you during that time, sorry about that.

But, I get the feeling things are going to be OK. I have no idea how. But it will happen.

1991

In 1991 I was living in a room in a flat above Firugi Jeans in Kentish Town opposite the tube, with 4 other students I had never met before. I was there as all attempts to find somewhere to live in my second year at LSE had fallen through.
The first person I met whilst she was collecting her mail in the shop was Alison. Al and I became really good friends, shared a flat together in my third year, her second in Stoke Newington and despite our parents side ways glances, were not sleeping together. Al and I remain good friends to this day. She was at Beth and I's wedding having flown in from Hong Kong where she's been living for the last decade or so.
I was reminded of this time listening to NPR's piece on Estonia. In 1991 it became a sovereign state away from Russia. My immediate neighbour in the flat was Krista, who was pregnant and quietly terrified of what was going to happen to her country. We figured she was pregnant as she spent a lot of time throwing up. Krista was at the School of East European Studies, Al was at the School of Oriental and African studies and I was at the LSE. Others came through, one at University College London and one at Kings. I never thought about it at the time but not one of us was at the same college.
One night Krista knocked on my door. I had a crappy black and white portable television and she wanted to watch the news, so she could check out what was happening in Estonia. I said of course which I think surprised her as she had the impression i was at best, a drunk, lurching my way around London. Things were tricky but working out in Estonia. she was very sweet, saying, "Simon, you are nothing like I thought you were.:" Bless. She wasn't actually that far off the mark at the time.

This came back listening to the president of Estonia talking about his countries success in the tech field. Estonia was left with no real infrastructure upon becoming a sovereign state and decided to become an electronic led economy. This was described as a 15 year bet, which paid off handsomely. SKYPE was developed in Estonia and Estonian coders are renowned throughout the world. A long way from Krista's fear that her country would dissolve in chaos, something which looked likely at the time.

This struck me as the world has been told we are going down the toilet for the last 8 years or so. That we have to help out dishonest money hoarders, as we can't afford to let them fail. We can. Its a big bet , but it would to be nice to bring them a little humility whilst taking their toys away.

Humbuggery

I have to stop sulking. I hate the winter. MS causes a major full stop and the wish to hibernate until spring. The un-trustable walking does not help and the sense that days have slumped into night by the time I get a hold of them is fucking annoying. "But Si, its Christmas!! Hate that as well, though humbuggery does some times bleed out, usually whilst drinking.  maybe that's the ticket. drink solidly until spring. Hmm...Or get a chinese and forget all about it.
 NPR was talking about the shipping forecast earlier on, how people find it calming even though they may not work on the sea. If I catch it, I do find myself listening along, and I live in the Midwest. Maybe Chinese and a shipping forecast. I didn't see that coming.

Adpocalypse

There is an advert on TV for bacon bowls. The voice behind it has figured out the most irritating way of saying bacon bowls..... I really like bacon. The way these two words are being mangled are really putting me off. I think this is a vegetarian conspiracy to push tofu.

Second at best.

The world has always been full of forward thinkers who see something which can benefit everyone. They are usually not the people who know how to profit from it. What tends to happen is the world changing idea is reduced to a shadow by the need for profit, which everyone accepts as the newthing. The bottom line is just that, the bottom. The arse of a glorious idea.
What does work is repeating shit ideas until they take hold. It doesn't matter how crap everyone knows your idea is, just keep repeating it until everyone shrugs and says, "Thats how it is." History is not going to be kind to our current time. In 100 years there are going to be kids linked together, stood in front of the virtual old world shrugging. "They did what?"
Coffee.

Red Brick

This evening Beth and I went with our friends Fran, Paul and Chris to the soft roll out of the Red Brick inn. Paul and i drank 5 double gin and tonics which I think adds up to ten. I got to remember how much I like drunkenly walking through a bar, how food that turns up late tastes like gold and how one fall on the ice on the way home is alright really.  now watching american horror story asylum. If you've never seen American horror story its great, don't watch in front of the easily offended.

Temperate.

On the whole I'd much prefer to live in a temperate climate. snow is OK for one day. Then I'm done. MS dictates that the drop in temperature knackers me in ways I know are coming but always sem to add a surprise I wasn't expecting. Living in America is actually easier as the temperature may get a lot a lot lower, but its crisp as apposed to the bone chilling damp I faced in England. On the whole I'd much rather be somewhere warm, looking at snowy christmas cards. But it will never be too hot or cold. How will I determine the seasons? At distance.