the writer, the actress, the singer and me

Finally got to meet the other trialists in my group this week. They have been randomised to the Alemtuzamub and until now have just been the voices next door. Last March,  as I sat on my own with my steriods and rebif I could hear them in the room next door, getting dosed up, chatting, laughing. It was their party and I wasn't invited. Well, I'd been invited to sit next door which was worse than not being invited at all. It was like arriving at school on Monday morning and everyone talking about the party they'd been to on Saturday night and you'd known nothing about it. Or maybe that just happened to me. And here it was being replicated 30 years later.

And so I arrived full of indignant intent like it was their fault...I'm cool. I'm good. You're all pals and I'm just the outsider on the cheap gear. Just ignore me. You stick with your posh drugs. Don't share them with me. I'm just fine and dandy.

And then they ruined it. They were all really friendly. Open. Chatty. Even the writer who said she was  a bitch wasn't at all. After a few hours I knew more about them than I know about people I've known for ages. Everyone a different story. Every experience listened to. Every answer respected. Stories of love lost and stories of love found. It was beautiful and I'm welling up now.

I have no idea where this has blog gone...don't be ill on your own I suppose. No, be ill with interesting people. That's the answer. Maybe I should start an ill-friend finder website. Find your perfect ill partners.

The art of Poo

It's a big week in MS world. The trial has been running for a whole year so I'm back to Whitechapel for an infusion top up and some comedy tests and then on Sunday I take the plunge and fly to Malawi via most of Africa it seems (it's a budget flight so I have three stop overs). Regular readers will know of my fear of flying so four flights to and four flights back should pretty much cure me of that. A sort of cold turkey for aerophobics (I looked it up on Wikipedia)

First things first though, I have three mornings of cannulas being inserted and then a couple of hours of steroids and anti-histamines flushed through me. The people on the new drug need this to counteract the side effects of the new drug. I have to have it to prove that the people on the new drugs haven't been made better by the drugs administered to counteract the side effects of the new drug which I haven't been given. I've got the old drugs. They don't need extra drugs to counteract side effects. But I get the extras anyway. In trial world we call that pulling the short cannula. Although whichever cannula you pull it seems far too long to go in a vein.
It seemed sensible to spend the day before this taking in some art and courtesy of arty bruv Paul we whipped round the Chris Ofili exhibition at Tate Britain. This was the perfect bridge between a trial for an illness that make you feel shit and travelling to Africa; modern art with elephant crap stuck to it. As elephant poo art goes it’s definitely the best I’ve seen.
See you in Malawi.

The sound of science

An MRI scan is a bit like an avocado really, well, much more expensive - hundreds of pounds for an MRI against avocados at 3 for a pound in the Turkish supermarket down the road, but they are both an acquired taste. And once acquired they are a bit addictive.

There's something very Stanley Kubrick about the metal cage fitting over your head to hold it in place and then being rolled into a metal cylinder only slightly bigger than you. In fact, being a decaying London hospital it's got a uniquely 70's Sci-fi feel to it. Holding a panic button in one hand whilst staring at the upside down mirror lets you see your potential saviour in the control room. They take on an other worldly context. You presume they're discussing matters of great science or at the least the progress of your scan, but in the back of your head you know full well they're talking about last nights Eastenders.

But it's the sound that I love. The clunking, the whirring, the booming bass synth noise. I can spend hours trying to work out the time signature of this ever evolving magnet symphony. Which is useful 'cos it takes hours to scan the brain to the googleplexsmillimetre. Steve Reich wrote some of my favourite music with his 'phases' series. 'MRI phase' is going to be my next project. A piece for three MRI machines slightly out of phase. I'm off down the Turkish supermarket to see if they've got an offer on.

In the footsteps of Madonna

Finally some excitement in trial world, something to challenge the trialists of Whitechapel. I've been invited to travel to Malawi to work on a music and theatre project with a company called Nanzikambe. Can I go? This will cause some scratching of heads...there's inoculations to consider - Hep A, Hep B, Hip-Hop, Typhoid, Typhus, Typhoo...Then there's malaria tablets...and it's a Chloraquine resistant area so requires Malarone. What's more there are long haul flights in pressurised cabins leaving me in a rabies present environment. And my tetanus is out of date...How will my Rebif travel...24 hours in planes, trains and automobiles...this will get them thinking. I sent off my e-mail laying out my travel plans. Twenty minutes later there was a reassuring ping in my inbox.


No problem. Have a good trip.

So that's it then. March 28th 8pm. Heathrow Terminal 1. Kenya Airways calling at Nairobi, Harare and Lilongwe. I shall try not to come back with an orphan.

I wear it well

Spent this week in Moscow. My favourite MS city. Freezing outside. Boiling inside. We did a workshop in a school one morning and the heating was up so high I wanted to go out and buy some shorts. Alas I was stuck in thermal long-johns and jeans ready for the snow drifts outside. My mother had sent me some thermal gloves she found in a catologue. They turned out to be fingerless wet suits for hands. The fingerless element didn’t work to be honest. Warm palms and freezing fingertips. I had to go and buy some ordinary gloves to cover the thermal fingerless ones. This resulted in really hot palms and fingertips at the perfect temperature. Maybe if I cut holes in the ordinary glove palms I could create the perfect Multiple Sclerosis twin layered all weather thermal gloves. I could market them in MS monthly. Hats are the other neccesity in Moscow. Fiona bought me a giant wooly beany, far too big and far too wooly. It was perfect.

Reasons to be cheerful. Part 3

It's a year since I started writing this blog and it feels right to end the year on a positive: Part three of the advantages of MS. At lunch today I was discussing the concept that there is too much "feel good" factor being attached to major illnesses. Too many people writing too many blogs saying "...it was the making of me"..."if it wasn't for the illness"..."I discovered myself for the first time when I was diagnosed"...etc.


I can't pretend to have made such life affirming discoveries. When all is said and done I'd rather not be writing this blog. I can however state that MS has meant that I can walk on hot paths between water slides in Spain with no pain.(Aug 18th) It has meant that I've met some people that I never would have passed the time of day with.(Aug 25th) And finally, continuing my Ian Dury title obsession, we get to "Reasons to be cheerful. Part 3"...London Town.
My monthly trips into a central London hospital have meant that I've discovered the great city all over again...and more. Buying a dodgy jumper at Whitechapel market, a stroll down Commercial Street towards St. Pauls, over the Millennium Bridge to the Tate Modern, strolling down the Thames past Gabriel's Wharf and on to the Southbank, taking in a play at the National. As I walk up to Waterloo I can enjoy the good humoured banter between bus drivers and cyclists.."Get out of the f***ing road you w****r". I can pass an unconscious drunk under the bridge, take the tube up to Piccadilly, discover an obscure gallery before walking up to Oxford Street for some mass Primark shopping. Experiences that remains resolutely London and have nothing to do with illness. Don't wait until you're ill. Whatever your city, whatever your life...go and grab it now.

Rhythm-n-ning

I've been feeling distinctly Thelonius Monk for the last couple of days. All stiff fingered and discordant. I can't play like him of course...It's just a good description of my health. I'd had a few weeks off from numb hands and pliered feet, which makes the return of it all the more unwelcome.

We're remounting a production of A Midsummer Night's Dream for which I wrote an annoyingly difficult piano treatment of Oberon's Take hands with me and rock the ground speech - all syncopated semi-quavers. When I tried to play the thing it was far more syncopated than originally intended and it sounded more of a quiver than a quaver. My fingers were not playing along, mainly I suspected, because my arms and legs weren't.

Me and the eldest child went for a long cycle ride in the hope of exercising my limbs into life. I was admirably impressed with her dedication to exercise when after about 100 yards she said...we must have been going for about 3 miles by now. Shall we get a hot chocolate and go home? That was my kind of exercise. When we got home she decided to practise her flute to which she demanded some piano accompaniment. Tune a day book one flute accompanied by hopelessly syncopated wrong notes. This was beyond Thelonius...this was Stockhausen meets Cage and gets a headache.

Still, I have a few weeks in which to re-discover my inner Monk...but until then here is something Thelonius made earlier...if I could be half as hip as this...


http://www.dailymotion.com/video/xb5v0r_rhythmnning-thelonius-monk-1961_music