Mission to Lars

Waiting waiting waiting

2012-01-13T06:01:00.000-08:00

Soundmix - nearly complete; colour grade - done. Finished film by end of February. Will do a friends and family screening, for crew, investors and a few key supporters round Valentine's Day. Website should be active by then too. Apparently the tardiness is my fault, because I haven't written all our publicity and website material.

It's painful work, and watching myself on film is excruciating. If there are any profoundly altruistic film PRs out there...

Seen Tom a lot lately. He's been having some big adventures, like, taking the bus to Exmouth and disappearing for a day. He was registered as a missing person, and police were taking it very seriously, given that he is considered vulnerable.

He rang Mum on his mobile to say he was lost, then lost battery. He's only recently been allowed on the buses on his own and is meant to stick to only the buses with numbers he recognises. Pushing the limits, the day before he went not just to Exmouth on the bus, but on into Exeter.

Well done Tom. Then, this. Where had he gone, where did he get to. Mum said he sounded frightened. We all went into full on flap mode, my Mum couldn't stop crying. And then, around 8pm, he walked through the door at Bystock, his home, and asked where he's been he said, Plymouth, and went straight to his room.

that's plymouth bus station's graffiti there on the right

He'd got lost and found his way home. I wish I knew more, but extracting details from Tom isn't always that easy.

We've taglined Mission to Lars, "everyone deserves one big adventure".

Seems Tom's got an appetite for them.

Me and him are going to take the bus to Bickington next time I go to visit him. I asked him where he'd really like to go and he said, "Don't mind, somewhere far away from here."

Ahhh Mumbo. You are so excellent. I can't wait to get you up on a big screen and let people judge you, then think again. the label, 'learning disabled' takes so much away from what people imagine you are capable of.

x

No post for two months and then twice in one day. It's like buses this blog

2011-11-09T06:02:00.000-08:00

Thought a couple of photos of Tom living large on his 40th birthday celebrations might provide warmen the cockles. I am especially proud of the boadyboarding...

It was hard work getting Tom in that wetsuit, took three strong men...

...but once he was in we were cooking on gas

walked through Newquay, rolling with my crew, lots of pisstaking

met Brendan, the instructor at Rob Barber's Body Boarding School

...caught some waves, man. no sweat

afterwards the lovely people at rob barber's gave tom a birthday cake

then we all went home to have 'posh dinner' and Tom made a short speech.

Afterwards he opened some birthday presents. His electric drumkit left him speechless

Happy 40th Birthday Bro, for you I really mean it when I say life begins n all that shit. You've climbed some big mountains in recent years, and I think you're feeling good about yourself...

Loutallica, Lousie Mensch, wet people, hard people, Tom's 40th birthday

2011-11-09T03:08:00.000-08:00

Watched Metallica and Lou Reed play Later with Jools Holland last night. White Light/White Heat was a satisfying mash up of poetry, french pop music and perky heavy rock, and while the album might be about sad things, tortured artists and wotnot, I found that one song poificktly cheery. Not sure what the Metallers think though. It's not exactly Master of Puppets

I shuffled myself into a camera free corner and watched lots of familiar faces from Metallica's backstage world act really busy and important. I didn't have the balls to go and say hello, but they were all there. Lars' drum tech, the manager, the security guy, bald Tom who always wear boot cut jeans and looks really mean. Tom Spicer was slightly obsessed by him, and for a while I worried that his affections would shift from Lars to Tom the security guy mid filming.

This did not happen with Tom the security guy, but by the time we got really close to the centre of power there was a very great danger that Tom Spicer was going to do a capricious volte face and make James Hetfield the object of his affections.

I know that Lars is his one true hero but Tom Spicer does like to keep us on our toes.

And how was LwJH?

There were the great, the good, the bad and the ugly of the Metallica world in that TV studio. I didn't walk in front of a camera to press flesh network and sshnuffle up to showbiz-metal botty, but I did go and say hello to Louise Mensch and her husband, Peter, the big boss man at Metallica's management company Q Prime.

She was very lovely and charming and friendly and (to drop in a note perfect bad feminist detail here) has a ludicrously good body for a 40 year old mother of three. She told me she'd followed the blog when we were adventuring across America in our exploding toilet RV trying to find Lars; Peter Mensch didn't know what the hell I was on about until she did some wifely nudging and then he was very, very, briefly friendly. I suppose in music management terms Q Prime are like Barack Obama, but a lot better with money and planning, but slightly less urbane looking.

Man, for rock impresarios at the top of the premier league, Mensch was wearing some superbad jeans, as in, ugly, not 'bad' as in 'good'.

Mensch was the first person I spoke to in the management realms as we tried to make M2L happen. I rang him in NY from London late one night and I will never forget that phone conversation. The man was scary. I was lying on my sitting room floor, taking notes of the conversation (HOW I WISH I HAD RECORDED IT, a lesson to me there) and he was saying, with real big boy menace, words to the effect of, 'without our blessing at Q Prime you're fucked you little pip squeak nobody'

It was an exciting moment, and I knew that if I was working in, say, arms sales or organ sales, I couldn't have met a nicer guy. No, I'm joking, he was firm but fair. Frankly, I was seriously impressed. Working at home, alone, with occasional forays to the library and Ibiza, I have become a pussy. I'm wet. Occasionally I sally forth into newspaper offices where I always regret not having packed a helmet. The world of work is a tough place, and I am a freelance wetty. The world of heavy metal work is appropriately, a really really tough place. It's appropriate that Mensch's wife is an MP. Those two must be major hard asses.

Louise Mensch was a good egg. (She sits on the Culture Media and Sport Committee Murdoch inquisition but our glorious lady journalists are only interested in whether she has had a facelift or not - er, who gives a toss? I'd hazard fillers and botox, but what do i know, I only have them myself.) She asked me if Tom was at the filming and I said no, it's his birthday today (8th December) and he was in Cornwall having one of his beloved 'posh dinners' with his mate Bob, who is another hero of Tom's, but one we don't have to chase across America to find. She said he should have been there, and I felt sister shame and like those characters in Little Britain who use their kid's terminal illness to meet stars they want to meet.

Ah yes, the film, where is the film now. The film is waiting to hear which film festivals it has or has not got in to. And it is finished, fully graded, locked and all those other filmy business words I don't actually understand.

Anyway, better shuffle off to the library to be wet. Enough of this blog shaped wambling, it's time to do some efficient terse journalism.

Goodbye.
Ah hello again...
We have a Facebook page now, please come and visit it and say something friendly, or rude, either's cool. Don't know where the promised website is. (OY, WEBSITE DESIGNER - you know who you are - GET YOUR FUCKING ARSE IN GEAR or I'LL COME AND KICK IT FOR YOU. HELLO!?)

Ah, sweet, I'm not such a wetty afterall....

PS. Check out Mencap's Little Noise sessions, Being a wetty, I'm holding out for Chris Martin on 24th

WEBSITE

2011-09-07T06:28:00.000-07:00

Soon, this modest, amateurish, heartfelt blog will turn into a proper website. This will function like buying a load of new sports gear and get me all excited about doing something that I was getting a bit slack at. It will function like that new geometry set and pencil case I got in August for the new term in September. It will encourage enthusiasm and it will force me to blog regularly, it will force me to search for meaning and answers where currently I push things under the carpet to resolve themselves.

Navigating the festival application political dance and wondering how much money to spunk on PR is currently the thing I am least able to think about.

By the time I blog again, at greater length, it will be something else.

We have been blessed with some blinding support since the film's come closer to the final edit, from some truly excellent people. We have secured theatrical release and a few other things I can't write about without getting myself in do-do. It is nearly impossible to celebrate any successes when everything else, hanging, is a potential failure.

Do I sound glass half empty when it is actually three-quarters full?

That's because one person's decision can affect so many outcomes. It's a well-known cause of IBS, I'm sure...

Adieu, til next time. Hopefully on a propa site, with moving shit n buttons n stuff

Wading through a stack of scientific papers. "What would Lars say?"

2011-07-23T02:24:00.000-07:00

I should have done this in a meticulous detailed way not months, but years, even a decade ago. As ever I have left everything until a few weeks after the last minute and I sit on a train to Devon elbow deep in genetic and behavioural development research papers trying to learn as much as possible about Fragile X in a day.

A minor (ok, medium to major) creative and ethical division is our latest elephant in the room. There is yet another difference between the boys (the boys being the two MEN who directed the film, James Moore and William Spicer - yes, the latter is some relation) and me (me being a sort of producer come executive producer come lumpen prole fundraiser and self-effacing emo philips monkey in front of the camera gimp).

What is this conflict all about?

I wonder if we can't layer some more sciencey science into the film, something that explains the effect of having a fragile x chromosome on my brother Tom more explicitly?

The boys think that the film needs to be a rolling tale, an emotional journey, and that just having this intense portrait of Tom and his siblings ranging outside of our collective comfort zones, is asking enough of what is a simple and emotional story.

I agree with them, and I have seen documentaries with too many cute devices that muddy the simpler and more important tale. In a gay way, documentary of this sort is a bit like style and architecture. Less is more.

I figure the cure for this little dilemma is to read, loads. Sleep on it. Write some lists. Watch the film. And then talk to James at the Wellcome Institute (who have given us a bit of a grant for the film, rather pleasingly) on Monday. Thankfully, William is away. While the bitter and simmering differences between us have gone, they are easily dredged up the minute we have disagreements. Kids and animals, pah. try working with younger brothers.

Will call Tom and ask him what he thinks, fairly sure he will says, "Er," thinking pause, "Dunno. What would Lars say?"

Okelly doke. Thanks for listening.

PS. Below is some information about Fragile X Syndrome, from release issued by lab developing treatments. Should add, Tom hates taking pills, and (aside from a short period requiring a whole other post) never has taken them - except for imaginary hangovers.

Fragile X Syndrome is the most common inherited form of mental impairment and
the most common known cause of autism. Fragile X Syndrome is caused by a
mutation of a single gene, the Fragile X mental retardation 1 (FMR1) gene, on
the X chromosome. The FMR1 gene produces a protein needed for normal brain
development. Individuals with Fragile X Syndrome lack this protein and, as a
result, exhibit a number of behavioral and physical symptoms including mental
and developmental impairment to varying degrees, attention deficit and
hyperactivity, autistic behaviors, anxiety, large physical attributes,
particularly of the face, and seizures. Fragile X Syndrome typically impacts
boys more severely than girls, with 20% of boys also receiving a diagnosis of
autism. There is no cure for Fragile X Syndrome at this time. A variety of
medications and behavioral interventions are used in an attempt to address
individual symptoms of the disease. Drugs currently used primarily focus on
treating specific symptoms such as anxiety, or improving and controlling
behavior.

friday 15th July, literary salon, latitude festival, 545. you coming down?

2011-07-15T06:21:00.000-07:00

Dongles ahoy! I'm sitting in the car going up the A12 to Latitude Festival, if this road is an artery there's a heart attacks ahead - probably mine if the traffic doesn't get budging.

Baby's first "Performer Campsite and Car park" sticker is already displayed proudly on the windscreen, like a 14 year old who doesn't take off their festival tags all year, if I didn't know what a modest and self-effacing person I was, I might think better I was showing off.

Latitude is a music festival with literary and arts bells on and an ideal place to do a test screening of the film. I'm also interviewing some authors in the Literary Arena and, cough, playing some music, cough, disc jokeying (yes i spelt that right) in the Sunday Times Style tent.

Not sure which makes me feel the more nervous, but showing a (special Latitude festival edit of the) film to people with no connection to it is definitely hairy. In the last few weeks we've shown the near finished product to Important People and had some useful and cheering response. I felt something close to elation when we got the clearance from the Metallica people who could have majorly obstructed our access to footage and music. There's an amazing story to be told there, but not today, while I am driving and typing and eating M&S carrot batons while trying to find the right exit off this road with a bad cold. Man, this road is BUNGED UP.

If you know anyone at Latitude, send them down. Tonight we're on 5.45 til 6.45 in the Literary Salon. I'll get some drinks in. It was my birthday yesterday so I am pining for hair of the dog. That is definitely not something I am doing while driving.

Thanks for listening. Screeeeeeeeeeeeeeeeeeeeech. Crash

Money is like buses...Wellcome and a Little Party and Cheques Pushed Down My Dress

2011-05-16T02:30:00.000-07:00

So there we were, staring into the abyss of pennilessness, wondering if Will and James could finish the edit and sound and do the graphics themselves, after work, after the kids had gone to bed, for nothing, and other tales of near impossible creative sacrifice.

There was about £2K in the Mission bank account and this was all we had to finish the bugger off. I have often compared the process of making a low budget independent documentary for free, when you are doing 'proper' paid work in the daytime, to an endurance steeplechase, you get over one hurdle and relax for two seconds before looking up to see the next one ahead. Occasionally one of the hurdles feels like the last and you romp home, hopefully, only to see another round the corner. Thus is goes on, endlessly. It can be demoralising, oh yes.

We desperately needed money to finish the film. Our application for a grant from the Wellcome Trust looked like it wasn't going to come through, I gave up on that. My fledgling film producer's pleas and little begging paws and round saucer-like eyes had got me nowhere on the fundraising front. I had to own responsibility for completely ballsing up an application for an important festival, and he we hadn't got in. I felt shit, then shitter. if only I was an American Tigger and could put a self-loving spin on it all; I'm a self-loathing Eeyore, and it was making my ears droop so low they grazed the ground even when I was in heels.

Miserable or not, we needed money and self pity wasn't raising a bean, let alone a penny.

The only thing I knew how to do well was throw a knees up. The second Mission to Lars party was launched.

Sigrid Wilkinson helped, she hosted the thing, put her name to the invite, she has an arts consultancy called, erm, Arts Co, and that in itself was an endorsement. She worked like a Trojan, and between us we found some great auction lots which I'll attach as a document on another post if you are curious. They had to be auction lots people would actually want. Don't you hate those dodgy auctions that involve golfing weekends and spa days. Like, SO WHAT.

Darling Justin of Joybear Pictures; the caring porn tycoon and son of a Jewish upper west side socialite came through with another walking talking part in his beautiful fairtrade pornos. Julian Wild, Sophy Rickett and Gavin Turk donated art. The world Famous Dixon Brothers offered to pimp an iPod, John Torode offered a masterclass, Five year memberships for Milk and Honey in London and NY, Pascal Dangin said he would do what he normally only does for the cover of the best Vogues, and retouch any photograph. I thought the auction lots were cool. We made some raffle tickets and begged and borrowed more prizes, Jeroboams of MiP my favourite rose from Lea and Sandeman and some undercrackers by Dirty Pretty Things. Amazingly, when people know someone else is paying for the party and all the money raised is going to proper causes and not dodgy overheads, people are so generous. Even my wild friends over in Ibiza offered some very generous stuff.

Hawksmoor did the food for cheap, we invited good and caring people, interested people, many of whom mentioned when they got the invitation that actually, yes, they had learning disability in their family and they really wanted to support us. Frantic and a bit panicky that it would all go tits up, there was actually a lot of love in the room before we all actually, erm, got in the room.

The whole thing was a bit more smart than the last dinner, auction, rave up I'd thrown to get us enough dought to get out of the country and on the Mission in the US. We got Greg Sanderson, the editor of The Review Show, to come and compere a bit of a chat with me and Will; John Battsek turned up from Passion Pictures - which I was pretty grateful for given that the night before I'd sat in the 1400 strong audience with Mick Jagger and other epic sorts at the premier of his film, Fire in Babylon, and this was a bit of a step down to say the least. We planned on giving half the money we raised that night to Mencap, so Mark Goldring the MD of the charity watched the film and said, yes, he would come and say a few words.

My work suffered, the week before the do I made so little money I only just covered my most basic living expenses. Then I got an email from Wellcome. Against my every expectation, they were delighted to inform us that they would be giving us a very decent sized grant to help get the film out there (because of its under the radar sciencey bits).

We decided to give all but a little of the money we raised on the night to Mencap. And, it was worth it. 60 people stood in the garden of the very kindly secretive philanthropist's house and they watched while I quacked on with Will about the film; they sipped the rather excellent drinks that the very kindly secretive philanthropist had paid for and their eyes definitely stayed on us and I couldn't hear talking at the back - even though I expected it. Afterwards we had an auction, and people slipped cheques into my pocket to buy shares (they put them somewhere, i was wearing a lime green strapless cocktail dress with no pockets).

In the end we raised about £25,000 in total. After the sensible people had gone home some less sensible people had a kitchen disco full of cheer and my Mum talked to everyone and got through lots of electric cigarettes. I hadn't drunk much because of nerves, but I felt drunk.

We have money now; and we gave lots of money to Mencap too.

I had better do some proper work now, it's getting a bit dire the lack of printed word I'm getting out there.

Every day I wake up and wonder when the BBC are going to email me with a yes or a no. I assume No to everything now, even though deep down I'm an optimist and a pile of yesses clank around in the deep bits of my psyche.

Talking of yesses and a noes. I did ask Tom if he wanted to come to the party and of course he said no. "No thank you I'm busy that day", he says, even though you've yet to mention a day. It really is a miracle we got him out of Bystock and on the road in the US. This whole film feels like a miracle.

We have been talking to Wellcome about the outreach around the film, about how to get the message in the film out to as many people as possible and trying to get Tom on the road is definitely part of it.

One hurdle leapt and another several appear...

Goodbye, thanks, happy rest of May to you x

'the last ten grand'. party only option - as ever

2011-04-08T04:47:00.000-07:00

S>N>A>F>U IT feels like every six months I write something about having to find 'the last ten grand'. currently i'm finding my latest last ten grand, well maybe a little bit more. i've proved myself v poor (D+ at best) at the whole 'picture the scene' richard e grant in the player style pitching for dough. instead i'm going to do what i know, and throw another party.

this one is going to be small - back in the day, before i was sensible, we used to call them microwaves - or to make it sound bit grander, a boutique bunfight. there will be a bit of banter about the film with someone important who can lend it some deserved credibility and showbizification, a screening of some of the film, in a beautiful house, stuffed with cool contemporary art, that i am borrowing from a secretive and philanthropic good guy. we'll draft in some thinking man/woman's crumpet to give the do a bit of conversational sex appeal and social jeopardy.

i will beg, borrow and steal lovely food and good wines. at the end (if people pay me enough money not to bring out my alter ego, a ridiculous middle aged mid life crisis type female who is a complete disc jokey, aka, DJ Set Wrecker) my philanthropy-soldier buddy, Sigrid, and I will stand at the door with more begged, borrowed, stolen goody bags, a copy of the film to take away and our hands held out, selling stakes in the film.

the guest list is small and nearly full of, let's be honest here, PEOPLE WE KNOW WITH MONEY. but if anyone out there in the world thinks they should be at this do, get in touch.

best way to contact me is via twitter, @spicerlife; or email me katespicer AT btinternet DOT com

the directors, will and james, are found at spicer & moore, their production company

i would dearly love to talk about where the film is at now in great detail but a deep suspicion tells me not to. don't want to jinx nuffink.

love and light (as my dear dear very old friend victoria beckham likes to say), kate

comrades! let's get thomas spicer on the television set. he's got more charisma than holly willoughby (but smaller boobs, for now at least given the rate he's gobbling pies he's catching up fast)

contact

2011-03-05T04:57:00.000-08:00

best way to contact me is via twitter; or email me katespicerATbtinternetDOTcom

the directors, will and james, are at spicer & moore, their production company

Comments

2011-03-05T04:53:00.000-08:00

I would like to apologise to the hundreds of people who have left some really wonderful comments on this blog; i never found them until now. some of them had incredibly useful and helpful advice, some of you had offered contacts that, at the time, could have changed our world. I am just gutted that I was such a dolt, that i never worked out how to view them all.

touched and full of thanks and will check my comments box regularly now.

kate

Sweet Thing

2011-03-04T07:05:00.000-08:00

A best friend said she was approached by her daughter recently "Mum is my tooth-fairy on benefits because my friends all got a pound under their pillow and all I got was 20p."
"It's ok sweetie she's just saving up to get a swimming pool installed at the back of her council chestnut maisonette."

Talking of sweet things, there was an article that caught my eye recently about cake. An unsatisfied customer and the lack of the candyfloss-topped tooth-melter named the Sweet Tooth fairy cake at a quaint shop in Cardiff. I see what the toof fairies are doing. Times are tough, but i remember when teeth fell out naturally; on a modest blackjack or fruit salad chew from days of yore. None of this fancy spread fodder. The pennywise little mites must be earning a hefty penny round Cardiff way. The mother in the shop threw herself to the floor in front of her zombie cold-turkey kids "going ballistic" because her favourite teeth decaying treat had sold out. Not before grabbing the shop owners hair the woman was apparently seen smashing the counter in a Vinnie Jones stylee - 'don't let me see this happening again, AWIGHT?'

The star of Mission to Lars Tom Spicer likes cake, especially with tea and 3 sugars. Unlike our sweet tooth loyalist above, Tom has impeccable table manners, even wiping away any trace of crumbs from the table so as not to make mess. "don't like mess, hate it". Tom thoroughly enjoys food and is not a snob about what he masticates - Just good proper tucker.
When he was a tyke Tom would wriggle with sheer joy as the book Fish for Breakfast was read to him. His lively peridot eyes signalling to the story teller like a lighthouse in the Farne Islands, bright and excitedly awaiting confirmation of what "loony" would do such a thing.
Tom now thoroughly enjoys fish for breakfast.

It was good to see Tom tucking in to the variety of food stuffs on the road stateside in the mighty Mission to see Lars. This is a magnificent film with many an astonishing scene such as a visit to see Lynne, herself very knowledgable about Fragile X, her son Andrew being FX. We see Andrew moshing to Queen in his bedroom, surrounded by immaculately applied Freddie Mercury posters on the wall. Is there a connection between those with fragile X and the love of heavy metal and rock? Fascinating. One thing Lynne confirmed as does Proffessor Randi Hagerman later in the film is that those with Fragile X are much more sensitive to sound than others. I'm intrigued to find out more. All these years we assumed Tom's tendency to ask for the tv and radio to be turned down for being "too loud" was just being silly. Ironically Tom adores talking about listening to music really really loud but like the time we conceded taking him to the tattoo shop to satiate that desire, or to the motorbike shop for a really fast bike, he was just in it for the banter! I've watched MTL about 20 times as I've wanted to see it with friends and family members to imbibe their reactions. All have been hugely positive and everyone picks up on the beautiful humour of the film interjected with very interesting knowledge of the FX condition.

The film picks up momentum like Metallica's Enter Sandman. Gets better and better. Tom's comic timing is impressive. He'll keep you guessing til the very end. Mission to Lars brings tears of laughter, joy and heartbreak. The recipe for an epic moovie don't ya think. Everyone should get to watch this film. It's so entertaining and super insightful. There is a part where Tom chooses to wait in the van while the rest of the crew go and do an interview. Voyeristically we see Tom, unaware of the camera left lying nearby, double-checking his perfectly packed bag for his roadtrip of a lifetime and displaying the beautiful FX charachteristic of hand flapping with uncontainable excitement at the mere thought of meeting Lars Ulrich of Metallica. Another favourite cheeky clip is at the end of the film when Kate chirpily asks Tom what he plans to do next - "that's enough Kate. leave it".

Tom's journey has certainly not ended it is only just beginning. We are finding things out about Tom and Fragile X that we have never known before. Wicked sense of humour being one of the super special things about him. Oh how we were warmed when Tom matter of factly started signing his autograph on the promotional film cards for people lucky enough to have seen previews of the film already.
Tarrah for a bit. Georgie x

clips of the film

2011-03-03T06:17:00.000-08:00

Waiting to hear back from the BBC and festivals is the closest I've got to that feeling of waiting for A level results; it's worst than waiting for my degree result because I knew I'd done badly in that.

PIES

2011-02-28T10:08:00.000-08:00

I rang Tom Saturday to ask him if he wanted to come for lunch. He told me he was "Too Busy", which annoyed me because I know he isn't that busy, yes it's lambing season and there is work to be done on the farm where he now works at Bystock - he ditched the paper shed a while back.

Really though, I suspect he just wants to hang out with his best mate Jeffrey on the massive white leather Lay Z Boy sofa in Jeff's room, watch telly, chat, drink tea and coffee and eat cakes and pies.

There's quite a lot of talk of pies at the early part of the film, Tom could see we found this chucklesome, and played up to it. I seem to remember asking him on camera at some point what he loved, aside from Metallica, and he patted his expanding belly and went, "Pies, mmmn, I love em."

The older (read nagging, read concerned) women in the family, Mum, my stepmum (Jane), me, have been increasingly concerned about Tom's less than ideal diet. His room is full of fizzy pop of every conceivable hue, Mr Kiplings slices, crisps, large blocks of cheese and crisps, and a withering length of cucumber that my Mum likes to put in his fridge, like a feeble totem of hope for a healthier future.

Tom's mate Jeff has convinced him eating Bystock Court's food is a bad idea for reasons I probably shouldn't go into too deeply. I've eaten Bystock food a few times, especially in the last year or so while making the Mission, and its like good school food, which I've always had a taste for. Roast chicken, mash, gravy, veg Tom? No, it's a ginsters and a couple of bags of beef crisps, tea, coffee and fancy cake in Jeff's room, no wonder my once string bean of a brother is taking on a round bellied avuncular form.

But, in many respects, its none of my business what he eats and none of his what i eat. the human rights act has also enshrined his right to eat pies, even though we think he should be cajoled into eating a jamie oliver type 'good' institutional meal three times a day.

I want Tom to live long and be healthy. As a shallow, image conscious, fat snob, I want my sylph like bruva back. he keeps saying he's going on a diet which so far means giving up sugar in his tea, well, giving up four of the sugars in his tea.

However, I have indulged many vices over the years. Tom doesn't drink much, smoke, spend cash on stupid things, he doesn't take drugs or owe Heidi Fleiss $50,000. If he wants to indulge himself in pies and fancy cake and sweet milky hot beverages, I really don't think I can object without looking like a patronising hypocritical nag.

I shall continue to nag and he will continue to ignore me. I'm posting the picture below because it shows us as the happy family we occasionally are.

NO word from TriBeCa film festival on whether we have been selected; no word from Wellcome as to whether they will give us a grant to finish the sciencey bits of the film and do a cool outreach programme. But lots of people asking me about it. Today, the builders, Franco and Reggie (two of Tom's less celebrtiy heroes, although Franco is quite well known in the town of Ashburton and is definitely quite rock n roll) and the more lofty Mr Holy Moly.

People's interest is f'inawesum man.

Writing this has made me decide to have a pie for supper

Buon Appetito

Confused people who think mental illness is the same as mental disability

2011-02-23T07:20:00.000-08:00

Incredibly, even a psychology student dragged this stinking ignorant opinion into a conversation recently, and I had to sit on my fists to stop myself punching her as she talked up a 'contraversial' opinion that disability and illness are one and the same.

People with mental disabilities are more vulnerable to mental illness, sometimes because of their disability, but just as often because they do not receive useful psychiatric care, or have suffered bad things in their lives that bring on mental illnesses.

You tend to be born with a disability and it will affect intellectual development; mental illness tends to happen after childhood and, often, it can be managed, treated, or, hopefully, cured.

There is a term, psychiatric disability, that describes someone so mentally ill they cannot usefully function in society.

Tom doesn't have a mental illness; he's about as likely to get a bit miserable as any other Spicer kid, we've all got a bit of a gloomy gene. He has a wonky gene and a misshapen chromosome, and he just got baked different as he developed in the womb and in his very early years.

Mental disability in a foetus can be caused by having a mentally ill parent who is drinking excessively, as it can a mother who has nothing to eat, which in turn damages the foetal development. But if anyone wants to try and tell me mental disability and mental illness are the same thing, perhaps in a debate type sort of a forum, I would be delighted to step up to that particular plate. Poorly educated 'free-thinkers' and hippies, especially, love to promulgate this asinine view. Then again, perhaps they are themselves a bit, you know...

Dude, I have not seen you in, like, years. Dude, where the fuck have you been?

2011-02-22T07:16:00.000-08:00

Bloggers that write, "It's been a while" are useless. So I'm going to say, I've been busy. Which is probably more annoying, but better than, "I've been at Daddy's place in St Barth's and skiing a lot with my new billionaire boyfriend" - which I haven't.

Where is Mission to Lars at?

Yesterday we sent the film to New York for consideration for the Tribeca Film Festival. Hoping, willing, some kind of decent sort of selection that might enable us to put one of them laurel leaf thingies on the bottom of our film poster.

It seems this, along with a microscopic cinema release, is what all the right documentaries wear these days. I heard a story recently about a low budget documentary maker who was a hit at the film festivals who didnt go home for a year. He just hoofed around the world as the guest of various film festivals, which is nice work if you haven't got any other work to do.

I'd be happy with one nod of recognition (preferably a bit more than a nod, a festival equivalent of a high five would be nice, because i'd prefer not to have to pay my own air fare and, frankly, i need the encouragement) from a good film festival and best of all, a proper good airing on the tellybox.

Mission to Lars is near enough to its final edit now, its about 80 minutes long and its funny and its sad and its got twists n shit. it's good. It's got this really specific ambient pace that we nearly lost but got it back because its so key to the story, because this is Tom's pace of life, not manic mine or Will's. In the final cut Tom leads the film, and that's as it should be. He's by far the funnier sibling of the three of us. A year ago I might have said that in a patronising hands between my knees sort of a way, but this time, I mean it.

Tom has genius comic timing. One scientist told me this was in part due to f-x syndrome.

I've been trying to get some money from a grant fund to finish the last bits of film. Documentaries rarely make much dough, and the more investors we have the less we'll get. So far we've given all our time and everything for free, James, Will and I. My accounts came in from the accountant recently and I was a little alarmed at how little money I'd made this last tax year. Penny dropped though, and I forgave myself when I realised how much time I'd put into the Mission. Will and James (james especially) have spent hundreds of hours on it.

It is appropriate that the brilliant Passion Pictures are giving us some informal executive assistance, because passion is what you get paid in it seems.

All's well though and something more and more like a proper film is taking shape. So at the moment I am out pimping for money for titles, credit and music. Mike Lindsay from Tunng did the score and he gave us cool mates rates, but he ain't working for passion. The title sequence needs to explain the F-X thing, so we don't get too bogged down in it during the journey, so I went to a well known scientific philanthropic concern to try and beg some money but you need a special sized brain qualification to fill out application forms for free money/grants and I don't know that i have it.

I am better at putting on parties and going to People With Money and opening my eyes really really wide while putting my hand out in a begging action. Though not very better. I'll never be a Weinstein, that's fo sho.

Way back, just before we went to Sheffield Documentary Festival (which is dead good) in November, the photographer Chris Floyd came to stay with the entire family in Cornwall and take some photos of us three for some promo flyers. Chris is an excellent dude who walks alone, a singular chap and a real spade caller (meaning he is honest, not that he is racist).

He was the first person outside of me, Will n James to see the film and this was a bowel loosening thought. When Chris liked it I sort of knew we were going to be OK. I didn't know how OK and I still don't but I realised that this crazy little plan had exceeded what I dreamt and hoped of it already.

Here are some of Chris' pictures from that day in Boobies Bay

Boobies Bay is a small rocky beach with a good right hander at low tide. We didn't surf much this holiday, there was a lot of demotivational drinking, my family's other team game - it can put you off family sometimes, the drinking thing

Tom's pretty smart with the drinking, he tends to know his limits, and only pretends to have a hangover. When he pretends to have a hangover he stays in bed til lunchtime and then eats a fry up and a hearty lunch in quick succession.

What else is there to say? Masses, like the editor we used who had worked regular like with Michael Winterbottom and Steve Coogan, and who trumped all the others in the frame because she 'got it'. Like the fact that Tom has a stack of flyers with that image above on the front, which he signs for all and sundry. The fact that at Christmas Will, his wife Tiff, me, my new fella Wolfie, and Tombo, all sat round the dining room table on New Years Eve and had a right funny banter about Mission to Lars and that lead on to funny banter about stuff in general and that warmed my cockles to a good heat.

If nothing else, Mission to Lars has changed our relationship with Tom and his with us. We've all got a shared experience now, one that crosses the divide of our life circumstance and allows us to chat and laugh together. The three of us, and in a secondary way, the whole family, have been on a crazy adventure together. Its stuff like this that makes relationships and are the foundations of bonding n shit. (I wrote n shit because I am starting to feel slightly awkward about the sentimentality).

Moving on.

I should do some work now. If you want to know more, there is so much to tell, do give me a sign and let me know I am not howling into the wind like a lonely blogger with an arse of cottage cheese and no friends, let me know I am not a female Comic Store Guy from the Simpsons. And please, if you can be arsed, say a tiny prayer to the Gods of getting on telly and being liked by festivals.

You rock for reading this, thanks.

Love from Kate

sheffield international documentary festival

2010-11-06T07:59:00.000-07:00

Been doing some journalism up at this unbelievably cool little documentary film festival in Sheffield, and, more scarily/thrillingly, putting the Mission to Lars about. Had some jolly positive feedback. Feel little in the way of self-congratulation because the truth is jumping each hurdle only reveals the next...

What is exciting is the fact that we are in a good place to apply to the Wellcome Trust for the last £30K we need. They give grant funding for documentaries with a good science angle and encourage film release to be run in tandem with outreach programmes. Meaning in plain language is that Tom, Will and I and perhaps even more siblings and parentals and stuff could hit to the road to talk and exchange ideas (did I just write 'exchange ideas', Jeez) about disability and about being a family coping with disability and most importantly about Fragile X.

Did I just type that last sentence. The water up here is affecting my head

KTW hit the road in dreamy family bonding adventure?

Er yuh, think we all know how that ends...

Anyway, about to go to my first ever round table where I get three minutes to pitch the film to a bunch of TV commissioners and distributors and sorts who can get the film seen from here to Taiwan. If I wasn't so tired (read: hungover) after a heaving drinking fest in the bar of the Mercure Hotel, which functions as a sort of Soho House up here, I'd be nervous, but I'm not. Sometimes hangovers leave you only with enough energy to function and not enough energy to overthink and flap and generally behave like a saggy old cloth worrybag. Sometimes hangovers are not a terrible idea.

There are loads of great films on here, hopefully many will make it to our telly screens. Some are super highbrow and for the head nodders only stroking their cords and others are fabulously mainstream and entertaining without veering into the reality telly box turf. I liked Autumn Gold, Sex Magic, Basquiet, ummm, just realised what time is, got to dash. But the film programme at Sheffield is here

And here is the flyer we've been stuffing in the right people's pockets when we can...

Bye bye. Thanks. Love. Kate

A weekend in Cornwall

2010-11-04T08:27:00.000-07:00

Watch clips of Mission to Lars here: http://www.spicerandmoore.com/category/documentaries/

After months of the film being in Will and James' hands, I started coming in to see the rushes reduced down to a rough edit that Will is taking up to Sheffield Documentary Festival tomorrow.

Aside from the odd constructive and/or destructive bit of criticism, I have to give the entire credit for turning the crazy plan into 80 minutes of movie to my brother and James at Spicer and Moore.

This last week the entire family, minus Ben, and including several grandchildren all piled down to Cornwall for a chaotic, large and noisy holiday. On the Monday the photographer Chris Floyd came down to take some promo shots of Tom for us to put on the flyers we'll hand out like kids on the beach in Faliraki while up in Sheffield. Tom and Chris got on well, Tom helped Chris set up his lights and then got in front of the camera and acted like a pro pulling all sorts of faces. It's incredible how much more capable he is when entrusted with important jobs, instead of just being passed over because he is 'disabled'.

The major message in Mission to Lars is not Tom's incompetence, but, in a way, ours, well mine at least, in understanding his disability and empowering him not smothering or bossing or big sistering him.

After Chris had taken the pictures of Tom, we sad down round the laptop and watched the first half of the film. There was a big heap of family there. I dithered in the kitchen wiping surfaces again and again, being busy, too scared to go in, too aware of how critical the family might be. When I heard them laughing once, twice and a few more times, I decided to go and join the sitting room theatre.

The film looks good, the story's all there. Now the film goes public, we take it outside the neurotic knuckle of the production with all that our team have invested in it and ask commissioners and distributors and organisations like BritDoc and the Wellcome Trust to invest their trust in it.

This is exciting and appalling in equal doses.

More soon...

Looking for metal music to borrow or buy for our film

2010-08-17T04:34:00.000-07:00

I had a bit of a weep yesterday listening to Metallica tracks; the lump grew in my throat and my eyes started stinging and I'm not sure what the cause was, the stirring thrash metal ballads of the second greatest touring rock band in the world, or just the memories of the RV trip with Will and Tom last December. Certainly, I saw them four times in a year so I am fairly well acquainted with their popular back catalogue now, which helps with the emotional connections.

Truthfully, I didn't cry, per se, but I felt close to it and slightly emotional. That rufty tufty old inability to jerk the tears at the appropriate moment has cost me many a TV job, not being moved that easily by stuff other than a wheelchair under my arse. but the emotion's there, it is. promise.

I don't know if I said in recent posts that I had been showing some little hunks of the film to various people some of whom clapped, laughed and wiped away tears, some real moist ones, some nearly there. Tears of laughter are more common than tears of compassion and empathy and sadness, but that's partly coz we haven't got to the bit where Tom may, or may not, meet Lars. That's the real cheek cleaner.

Others have not laughed or cried or said much, they've responded with a sort of mute awkwardness, which I guess means we won't be getting the Care Bear loving PC community coming to see our film about the reality of family life, be it with or without a learning disability to confuse the familial chaos further.

Anyway, one thing the film highlights is that I am a far bigger pain in the arse and embarrassing twat than Tom is; and on that note, I am off. I need to do some work. The washing machine exploded recently, and I've had to spend all my fun money on white goods and I need to make some more dough fast.

I have pasted in the Soundcloud gizmo here in case anyone's got some heavy metal we can use for our soundtrack that doesn't cost the earth, ie, more than a few thousand quid, even if it's really good.

We haven't come to an agreement with Metallica yet regarding what we can and cannot use of their backcatalogue and the enormous amount of live stuff we filmed while on the road. I am preparing some huge tremulous puppy dog eyes and hoping for the best, although I don't think any lawyer ever fell for puppy dog eyes, so I might as well just take my fingers and cross em. or, fold down the two middle fingers and ROCK ON. I don't think sexual favours will help either. So, yeah, we'll just have to beat those tracks out of them, if security will let us past.

Send me your track

Tom's Metallica Stuff - a sneak peek at the Mission to Lars

2010-07-21T06:14:00.000-07:00

The editing continues. Slowly - cheaply. Looks like we'll bring the film in at fashionably low budget, which is all the rage these days doncha know. Though that doesn't include marketing which clearly will cost a bomb, flying us all round the world first class with an entourage and private chefs to warm up all Tom's pies for breakfast lunch and dinner.

Back on planet earth, I have a few small chunks of film on my laptop that I shouldn't show anyone other than those prepared to give us a bit of cash. But I will share a nugget here just to see if any followers are awake at the back of this incredibly inconsistent class. This scene involves Will trying to persuade Tom to truffle out all his Metallica stuff. This is like getting blood out of a stone. But you get to meet Tom.

Say Hello. You'll be seeing a whole lot more of him once this film is out n about. You'll also have to see some of me. An editing fact that nearly blew my head off with cringification until recently when I realised it is a neccessary evil to make the film move and happen and anyway, someone's gotta be the bad guy, to paraphrase tony montana.

alrighty. time to do some money work

After a long absence...

2010-06-15T04:23:00.000-07:00

Where did I go? Where da fok did I get to on this blog...

It's bad etiquette just blowing out your blog, but as its a blog and no one can tell me what to do on it, I'm just going to indulge my conscience with a stream of excuse.

The film went totally out of my fairly incapable hands. Will and James started logging the 100 hours of film, and then, slowly, James started to work on an edit that we could take out to investors broadcasters and distributors. This took significantly longer than we ever factored in. I remember when we first went to Passion Pictures (you may know them from such documentaries as the new Rolling Stones one, One Day in September, Age of Stupid and My Kid Could Paint That), who, if Mission is any cop, are going to come on board at distribution and festival time. They asked how long we estimated the edit process would take, and Will said about 6 weeks and they kind of laughed, really nicely, at us.

Meaning. Yes, it is taking a lot longer than that.

And it will probably take a lot longer than the lot longer we imagined. Will and James are busy, they just moved into new (and well-flash) offices, and Mission is a passion project until I can secure some more funding from investors and the UK Film Council. Ah, see it isn't out of my hands.

Creatively though, I had no part in the process so I just carried on being a freelance journalist, doing a bit of telly and radio, and life reverted to normal.

Money is an on-going need and I did get myself out there on Mission's behalf. And doing this I met P.

P is a highly intelligent and accomplished character, who has a life of achievement behind him that I find surreal in its extraordinariness. He has lived in all sorts of interesting places, has climbed mountains, jumped from planes, made millions, he has helped whole towns come into being, and is, I think what they call in finance a big swinging dick without actually being a dick at all.

I was introduced to P by a woman I met while doing Panchakarma in India (she and I bonded over drinking warm ghee daily, which isn't anything I'd recommend in the moment, but I sure felt good when it was over and all my 'doxins' had released themselves). The woman listened to me talking about Tom and about our Mission to Lars and a penny dropped, "I think I know someone with F-X" she said. This was P. She asked him for some money for our film and he invested the largest sum of anyone. When we had shot the film I wrote to him saying thanks and describing some of our experiences.

A month or so later I went to visit. P has partial mutation F-X, this is what carriers have, while Tom has full mutation, which causes the mental disability - what I should, in PC terms, label his learning difficulty. Partial mutation can mean many things, it means you may pass F-X on to your children; it means you may develop depression, experience early menopause, it means that, particularly as a male, you are likely to develop an age-related neurodegenerative disorder, specifically fragile x associated tremor ataxia syndrome, somewhere in your early old age. and this is what happened to P.

I've been to visit P a few times now. And it's not really for me to write about his condition or his circumstances, but F-X has blighted his later life alright. safe to say that. he has this fierce superior intellect, he is connected to all the right people, he is treated by the world's foremost medical and clinical experts in the F-X field, Randi and Paul Hagerman (see blogs passim), he has permanent, gentle, superior care givers. He is, all things considered, fortunate - relatively. he is fortunate because, for no reason other than this, he knows the cause of his mystery illness is the inherited lack of a specific protein that causes Fragile X.

Randi Hagerman suggested to me that there are many millions of people around the world affected by F-X, including doctors, who have no idea what Fragile X is. If we can make an entertaining film AND provoke more interest in this little known, yet widely suffered, condition, then we will have achieved something.

Thing is, without the entertainment, the education won't happen.

So its all well and good feeling noble and that but its of no use in making watchable films.

Thankfully Will and James don't have delusions of self-importance and nobility, and it is in their hands at the moment. All I have to do is find money and fill out film fund forms. Which I return to doing now.

Nose turns grindstonewards... x

How many metallica fans does it take to cause a riot

2010-03-12T09:41:00.000-08:00

There was rioting in Bogota last night outside Metallica's gig there: http://www.nme.com/news/metallica/50193
As I looked into this it soon be became apparent that the words riot and Metallica are often snuggled close in newspaper headlines.
Chile and Columbia is understandable, lifes not always great, people get pissed off when they can't get those things as basic to human need as food or a ticket to a Metallica show. But what about Sydney? Or even more incredible, the band even had it all kicking off in decent and mild mannered Canadia's second biggest city, Montreal.
Obviously Metallica didn't cause these riots themselves, they were on their private jet doing yoga stretches probably.
But they still deserve to be the Emperors of the Devil Horniverse

2010-03-06T06:33:00.000-08:00

Here are some pictures my SiL took of Tom, Will and our Mum looking a bit like a woolly bear in the Dartmoor gales. In the middle one Tom and Will look a bit like they're posing for a promo shot for a band, Dartmoor is a bit like Joshua Tree, isn't it?

The dog's called Cleo, she's a rescue labrador and her best mate is called Saffy who has lesbian tendencies (she is also a labrador). Cleo's boyfriend is called Hector, he is also a labrador, but he lives in one of Godalmings surrounding villages so Cleo doesn't get to see him as often as she'd like. Recently Hector, Cleo and Saffy clubbed together and killed our family's lovely cat (also a rescue animal). I'm writing like this is a primary school essay called, "A windy day" or "My pets". Where am I going with this? Ah yes. Nowhere.

Tom is in Bristol this weekend with my Dad. I expect tonight they'll tuck into some "whikky" as Tom calls it. Our stepmum will have a cheap blend, like Grouse; Dad will offer Tom the pick of his selection and Tom will always, instinctively, point to the most expensive one like a billion year old Llagavulin or something. Cheers all! Have a great weekend.

By Helena Oliviero

The Atlanta Journal-Constitution

12:11 p.m. Friday, February 26, 2010

Shawn Helbig can only read small words but knows every line of “High School Musical.”

He smiles easily, but struggles to hold a conversation.

The 27-year-old lives at home and holds a part-time job at a pet store.

Shawn has Fragile X Syndrome, which is the most common inherited form of mental impairment.

But he recently started taking a caramel-colored pill every day he hopes might help him communicate better, process thoughts more smoothly and put him more at ease in the world around him.

Shawn is Emory University’s first test patient in a clinical trial for the drug originally developed for anxiety disorders. It’s a drug that could maybe, just maybe, someday help him learn to live independently, like most 20-somethings.

The pill, which currently has no name and is identified only by a number, could be the very first pill to treat the root cause of an intellectual disability.

“Before, we could never do this,” said Dr. Jeannie Visootsak, who is running the clinical trial at Emory’s Fragile X Center. “This is the first time we are looking at treatment. I never thought we’d be here today. It’s amazing.”

Emory’s drug trial will ultimately enroll a total of 60 patients. In Atlanta, the total number will be about 15. In addition to Shawn, six more test patients in Atlanta have recently started taking the pill.

If the trials, being conducted by F. Hoffman-La Roche pharmaceutical company, are successful it could have far-reaching implications for other drug treatments — for disabilities long considered permanent and untreatable.

Up until now, doctors could only prescribe medicine for some of the symptoms of Fragile X patients, such as hyperactivity and anxiety. But researchers believe they are now on the cusp of being able to prescribe a drug to address the molecular basis of the disease.

Besides Roche’s clinical trial, a small number of other clinical trials are under way, including one in its early stages by Massachusetts-based Seaside Therapeutics and another one by Swiss drug maker Novartis AG in Europe. Their drugs might have a similar effect on Fragile X patients, but because of the competitive nature of drug development, it’s not clear who might be the first one to bring such a drug to market.

Researchers don’t expect the drug Shawn is taking to cure Fragile X, but they say it might alter the brain chemistry of people with the syndrome enough to improve the mental abilities of children and adults who have been labeled intellectually disabled or mentally retarded since childhood.

Helping a child with Fragile X have fewer tantrums and be less anxious and sensitive to sounds can let the child better concentrate and focus, and ultimately live a more normal life.

It’s a moment Emory has been building toward since 1991, when Dr. Stephen Warren, chairman of human genetics at Emory University’s School of Medicine, led a team of researchers who identified the gene on the X chromosome responsible for Fragile X.

Since then, researchers have made more breakthroughs in neuroscience to better understand how Fragile X affects the brain — and what could be done to reverse it.

Once a week Shawn, who lives at home with his parents and younger brother in Johns Creek, spends up to eight hours at the center, getting blood drawn and undergoing a physical exam to monitor the effects of the drug.

Shawn, who is considered highly functioning, hopes to see changes within himself.

“I want to be different,” he said.

Clad in jeans and pink oxfords, he pauses. His bashful smile disappears. His brown eyes turn serious.

“Maybe it will make me smarter,” he says.

His mother, Sandy Britt, holding back tears, also has big dreams for Shawn.

“This pill gives every parent hope,” she said. “If it’s 5 years or 10 years or 2 years, you can see there’s a light at the end of the tunnel.”

Others don’t understand

By the time Shawn was 2, his mother knew something wasn’t right.

His speech was delayed and he was prone to outbursts over little things like his wooden blocks tipping over. By kindergarten, Shawn still had trouble writing his name.

His teachers and day care workers dismissed the signs and told Britt she just needed to discipline her son. But when Shawn was 7, she took him to see a developmental pediatrician who diagnosed the boy with Fragile X.

As a child and teenager, Shawn took speech and language therapy. He took special education classes and work-study programs. He graduated from high school in 2001.

Britt said she has encouraged him to be independent. She lets him keep money in his wallet. He has a house key allowing to him be home for a few hours without supervision.

But Shawn lives a life of routine: Every morning, he gets up at 6 a.m. and eats a toasted bagel. At 1 p.m., he watches “All My Children.” At night, he shuts his door to his bedroom and sings along to the music of “High School Musical,” a movie he’s watched hundreds of times.

Britt said her son is a “big teddy bear,” and she often uses the word “sweet” to describe him.

Over the years, Shawn’s outbursts have become less frequent, but they can be intense. About 9 years ago while on a family vacation in Key West, Shawn fell apart during a star-gazing cruise. Britt said her son was eager to get on the yacht, but 10 minutes into the trip the darkness, the crowd and unfamiliar noises on the boat became too much. He screamed and cried, collapsed onto the floor and curled up in a fetal position.

“There were the stares and the looks and people saying things like ‘he must be drunk.’ Others were yelling, ‘I want my money back!’ ” she said. “You just never know when these things might happen.”

She devised a method to answer strangers’ stares. She carries in her purse laminated cards with a pale blue X and information about Fragile X.

“When you see Sean, you don’t think there’s anything wrong and then when people get a response that is not age- appropriate, they give him this look like, ‘What is wrong with you’ and then they look at me, like ‘And what is wrong with you?’ ” Britt said. “So I just give people this card. It’s just easier that way.”

Drugs show promise

About 100,000 Americans have Fragile X syndrome.

People with Fragile X lack an important protein known as “FMRP” that acts to regulate other important proteins in the brain. Without FMRP, which puts the brakes on other brain proteins, there’s an over-stimulation of brain connections that can impair brain development.

About four years ago, Luca Santarelli, vice president and global head of neuroscience at Roche, realized an experimental drug tested on anxiety disorders might also have an application for the over-production of proteins in Fragile X brains. Dr. Randi Hagerman, who directs the MIND Institute at the University of California, Davis, and is involved in multiple clinical trials for Fragile X medications, believes the experimental drugs are showing promise with improving language, eye contact and behavior.

“In the bigger picture, I think Fragile X will be one of the first disorders associated with intellectual disability with significant reversal,” she said.

She believes treating Fragile X could provide enormous opportunities to treat autism, which is closely related. While a third of people with Fragile X are also autistic, only between 2 and 6 percent of people with autism also have Fragile X.

Even with signs of promise, developing a treatment is a daunting proposition. Most experimental treatments fail to make it through the three phases of clinical testing needed before they can get FDA approval for use in the public. Still, with so many leaps in grasping how Fragile X affects the brain, Warren believes real help is within reach.

“You can look at these kids and you get this impression they know what’s going on and they are having a tough time expressing themselves and they have social anxiety,” he said. “There’s a light-behind-the-eyes sort of thing.”

Pill represents hope

Britt believes that since he began the drug trial, her son has become more communicative and his words less slurred and he makes better eye contact. But she admits the changes could just be her own wishful thinking. For his part, Shawn said he doesn’t have as much trouble talking.

Dr. Stephen Warren of Emory said it’s premature to make any conclusions: the study is double-blinded, which means only some of the participants are getting the experimental drug while others are simply given a placebo, and not even the doctors know who’s getting what.

With the trial in its fourth week, Shawn shows up with violets for Visootsak, who asks everyone to call her by her first name.

“Ah, how sweet. You make me smile,” said Visootsak. “My connection to Fragile X is patients like Shawn.”

Visootsak spends a lot of time talking to Shawn. She listens intently to him wistfully talk about his high school days, going to the prom in a limousine, his mom crying at his graduation.

Visootsak said she would love to see Shawn live independently someday.

For Britt, this pill represents the hope she’s clung to for decades.

And while she still carries those laminated cards in her purse, she clutches hope that there may be a day she can leave them behind.

“It may unlock what’s stuck in their minds,” she said. “Imagine having something locked up in your brain and you can’t get it out. Imagine the frustration that is there. ... You’ve just got to have hope because if you don’t have hope, you’ll live a downer of a life.”

----------------

About Fragile X

What is Fragile X syndrome?

Fragile X syndrome is the most common cause of inherited mental retardation, affecting about 1 in 4,000 boys and 1 in 8,000 girls. It can cause a range of mental impairment — from mild learning disabilities to severe intellectual disability. Physical features of Fragile X that may or may not be present include long ears, faces and jaws. Many children with Fragile X have behavioral challenges. Boys are more likely than girls to have trouble paying attention or being aggressive. Girls may be shy around new people.

What causes Fragile X?

It is an inherited mutation of a gene (FMR1), found on the x-chromosome. While the mutation is passed from parents to children, parents may have the mutation but not have Fragile X themselves. The gene normally makes a protein needed for brain development, but the mutation causes a person to make less or none of the protein.

Why are boys more affected than girls?

Boys are generally more affected than girls because girls have two X chromosomes and the one without the mutation can partially compensate for the non-functioning one.

SOURCE: University of Michigan Health System, National Institutes of Health

Find this article at:

http://www.ajc.com/news/fragile-x-locks-minds-332289.html

when we were all in the RVs we watched this and chuckled til our eyes leaked water and i needed a wee wee

2010-03-04T05:53:00.000-08:00

if you like metallica, you HAVE to listen to this
if you like a laugh, you HAVE to listen to this
if you're a bit boring, well, go back to watching countdown and keep calm and carry on

http://www.youtube.com/watch?v=m3m6RM_PTLg&feature=related

if you enjoyed it, now listen to the second part

http://www.youtube.com/watch?v=59xskijoM-g

mission accomplished-ish

2010-03-04T05:27:00.000-08:00

"Grrrrrrrrrrr yeah, Metallikaaaargh!" Hamming it up with devil horns and middle fingers. (Is James preparing himself for a lap dance. Will looks like a scary rabbit. Leigh can't be scary, neither can Ben. Or me. Those T shirts are mostly ripped off, bought off the pavement some distance from the merch stand - which is embarrassing. Tom hangs on to his dignity.)

Mission to Lars cast/crew , Orangeland RV Park (No 1 RV park in America), December 2009

I haven't posted anything for a while because not much has happened, except me and Will biting each others heads off whenever we chat for more than 2 seconds about the film. Everyone's been trying to get their bank balances back to normal, lacking a rich mummy and/or daddy to bank roll our little project, we've had to squeeze it in between real live money work. this isn't so bad for me, but for will and james its quite hard.

Anyway, all the rushes are logged now (or whatever it is you do with a rush) and we're getting the dialogue transcribed and we're ready to roll with the edit now.

Someone suggested we go to a TV channel with a teaser and get an executive on board for the edit.

Someone else suggested we just make our film.

An awful lot of really interesting people still want to help us, which is pretty awesome dude.

James just sent me this picture, it was taken after the mission ended but before me and Will actually couldn't be in same room as each other. We all look quite happy. This was a sort of a wrap party, we'd gone to a student Japanese in Newport Beach and then had some lager in a kebab house by the marina. Do you think the wrap party for Avatar was like that. The large black shiny thing is a Metallica beach ball (and why not?)

Sadly, I am looking like an aerobics instructor while the others look quite metal. Tom looks really happy, and that's good, because he wasn't a lot of the time. One of the cameramen got a Mission to Lars tattoo after me and Will and Tom left to go back to England. (The other crew stayed on because they wanted to do lots of filmic pick ups (and go to titty bars)...)

I was chatting to the lead singer of Hot Hot Heat the other day. They put out their own albums now. Independent can mean truly independent these days. Or we could go taster in hand to the TV channels and see if they like us any more now that the film is made.

I'd better stop blogging as I have a deadline and I'm sitting in the London Library with only 5 hours left to do it in and I have to fit in a quick snooze and lunch as well. Such is the hectic pace of a freelance journalist life.

I'll be back

2010-01-19T03:04:00.000-08:00

I have not forgotten this blog, I am just working my ass off trying to make the money I never made last year while I was pimping my ass out for raising the money for the film, and generally doing the film, and generally not making a penny and messing badly with the whole concept of cashflow, by sticking everything on American Express.

I've got a heap of stuff I'd like to unravel my brain into this blog on, but for now, it's deadlynz are us, and a heavy application of discipline.

I also did no exercise the whole time we were working on this film and I have this unsightly stress and laziness induced jelly roll, a nasty ass bit of flubber, round my midriff, which could do with a little work as well.

So I'm feeling less Mazel Tof, more Muffin Top

Tom, also, is digging back in at Bystock. He was angry and arrogant at times over Christmas, which is good, I think. But the parents weren't so sure. I wonder if they think it was a bad idea?

Who knows, we try not to talk deeply as a family, there's just too many of us to get in a stew about.

God love em all.

Meanwhile, my ex-boyfriend hates me I think, probably because I repeated some things he told me about telly folk, and because I said Tom had a better sense of humour than him in this blog. Ah well, we hated each other anyway.

Public, that's where you air dirty laundry. Let it breathe!

I'll be back. (Another one of Tom's heroes, pre Lars)...

hit this for hours (moments) of Arnie joy

big movie thinkings, therapy, family denial and a woman who likes to talk about anal sex

2010-01-07T10:42:00.000-08:00

So I had a conversation with this person who I will not name who is right in the thick of it all, it all, regards movies. They urged me to raise way way more than what I am currently looking for to finish the film, in order to cover my marketing back and to ensure that people took us seriously. The person said that what we have actually achieved now needs to be analysed by a story editor to decide which way to take it. Repeatedly, as everyone does, I was told that documentaries make no money at the cinema.

The conversation went on for a long time and does not likely have a value in repeating as I like this person very much and felt very touched that they wanted to help. Names were dropped, in a very unselfconscious fashion, which forced me to think, can I front it out with such people, and be a splendid self-believing compulsive achiever. I felt a combination of bumbling fool, plain excited, and concerned about my working relationship with James and William. If I throw the weight of major ambitions behind Mission to Lars then it becomes a bigger and more brutal organism than the sweet journey we initially forsaw. The sweet journey which it was, admittedly very occasionally, will be lost in any attempt to make a majorly marketable product.

So much argument is inherent in a collaboration, even of this size, and I have always been a highly confrontation averse person. The reason we argued a lot on the trip was not just the pressure of the whole situation, it was also down to mistrust, nerves and poor communication around each other, aka, my poor people skills. I assume feelings like this exist on big projects of any nature, unless we're talking the Disney version of business where everyone drinks coffee and eats biscuits and says, "Great" a lot. I suppose I need to fight on and not shrink away from wrestling out the small print and big ideas alike.

My heart's not in telling the truth in this blog so I am going to stop. It's all looking a bit opaque, and dull. I'm sure what I am really trying to say will surface more clearly at a later date.

Onwards and upwards, much to look forward to this year. Like, umm, my tax return and the spot on my chin getting smaller.

Should get my tests back soon to see if I am a premutation F-X carrier. Which will inspire a lot more focussed thought. We talked a lot about this over Christmas, about all the symptoms F-X carriers display and the family members who may have displayed them. (An awful lot of it was piss taking and general shouty bossiness along the lines of, "No, you are definitely a depressive, I know you are," when someone says they're not. And things like, "Well, maybe she was just like that and it had nothing to do with the F-X". Or, "loads of people are like that, its not necessarily an F-X thing", basically your typical evasive, avoidance rich, science lite, family discussion. No one in the family seems that keen on talking at length or depth though. That's how families get by, isn't it. God, imagine if a family was like group therapy. Erk to the power of 10. Orphan me, now!

Having said all that, the family of Metallica has done an awful lot of group therapy. I refer you to the most blinding rockumentary ever made, Some Kind of Monster. In fact, I might just ditch my dinner plans and stay in and watch it. Got to go now, have to interview a lady who specialises in, among other things, explaining the pleasures of anal sex. I can't wait.

qualifying last night's post

2009-12-31T04:00:00.000-08:00

Honestly, things are all fine enough, I just think Tom had it up to here with a mountain of squawking rellies, and the trip boosted his confidence and communication skills, we were a flat organisational structure, with no real hierarchy, and suddenly he's back struggling with a hoard of so called normal people who aren't necessarily putting communicating with him first, that unseemly self-organising hierarchy that is a typically dysfunctional family. It's probably just a bloody pain and he can't be arsed with it. Know the feeling.

I'm just going to take him up a cup of tea - still loafing in his bed at midday - and see if we aren't getting on better today. Him and Will had a grand time planning Tom's big business idea, The Club, which he wants to build in the woods behind Bystock. So I really do think its about giving him time and concentrating on that, not always easy at these mass festive clan gatherings.

More about The Club later. (It's a quiet nightclub, for blokes, and for favoured unannoying females. Metallica's head of security, Tom, is to be headhunted for the door, and for coming in for whiskeys and banter later. There's going to be a huge open fire.)

So Tom just came down and he's gone off to get the papers and we're getting on fine, so it's cool beans. He says he wants to go back to Bystock today. Mum would like him to stay for NYE, but I know that Tom is missing his best mate, Geoff, and if Geoff is back at Bystock too then that's where Tom should be.

Here are some more of Tom's pictures. This one is of the sound dude, Ben, map-reading, a near permanent job (along with holding the dodgy sat nav into a plug socket while running the generator while driving), in one of the RVs.

The rest are in transit, from the RV window.

Happy New Year, think 2010 going to be an arsehole, but that's just the shit in my head it's not an astrological prediction.

2009-12-30T12:19:00.000-08:00

Tom is being dead reclusive and doesn't seem very happy. He didn't enjoy a lot of the America trip and he's not afraid to tell people that it was boring. I went upstairs to try and ask him what was wrong with him today and feed him more sandwiches as he's not that interested in coming down for meals, but he just turned away from me and refused to speak, other than to nod his head when I asked if he wanted me to leave the room.

Any nice warm feeling of doing something nice for our brother is seeping away and I am wondering if I actually have made things worse for him. His frustration levels seem to be high, having all communicated pretty well in the US we now barely communicate at all. Not sure where my heads at with this?

Anyway, here are some more of Tom's disposable camera shots.

I think you'll agree they have a certain Martin Parr-esque banality

this computer shot out of a cupboard on a bad corner not long after this. my insurance didn't cover it. buggery!

Tom's photo's from the shoot

2009-12-29T13:54:00.000-08:00

Tom took a lot of pictures on his big bundle of disposable cameras, and here are just a few of them.
1, Will working in Mamaly's flat, when we first arrived in LA. 2, Will, James and Tom in the lobby of the last hotel we stayed in before we picked up the RV. 3&4, Driving from Bear Mountain to Anaheim, view from the RV window.

We're all at Mum's at the moment, trying to rest up after a big, mad, family Christmas. Tom's escaping squeaky kids n just as squeaky grown ups by sitting in his room all day listening to heavy metal.

He's not the first to do that, and he sure won't be the last.

We just wrote a thank you letter to Lars, Tom kept wanting to ask to see him again, and ask him whether he wants to come to Mum's for cottage pie. We thought maybe we'd wait on that front. He probably isn't ready for an invite to Ashburton for a kitchen supper just yet, I mean he's hard and heavy and knows a lot about art n all that, but cottage pie in Devon. Fooph, that's mental.

Happy New Year, yessirree.

headbanging in the office at bystock

2009-12-29T13:43:00.001-08:00

Tom's letter to Lars

2009-12-29T13:41:00.000-08:00

Bystock Court

29 January 2009

Dear Lars

I am writing to thank you for all you did for me my brother and sister - when I met you backstage at Anaheim. It was great talking with you and to have played on your drums and gone into the concert with you was amazing - and very loud.

The trip was crazy. Following your tour from Vegas to Sacramento and then Anaheim was exhausting - for you to do this all year must mean you are very strong. There were times on the trip when I was afraid but you helped me be brave.

Since I came back everyone was shocked at some of things I had done - I know they are very proud of me.

How's Connie? I hope you all had a good Christmas. We'll be sure to send you some early cuts of the film as we would love you to be involved.

I'll see you soon, all my love

Tom

A word of warmy from my cold ass

2009-12-23T13:36:00.000-08:00

I've never in my life got involved in something other than a human or a pet that had a life of its own until the Mission to Lars project started screwing my nice steady existence up. Largely its been fairly unpleasant, getting rejected by big time teevee; raising the money, not having enough money, doing a massive party to get more money. The shitola has come in every form, from the venue not having enough wine glasses for a four course money raising dinner to my confidence being razed on a regular basis. Going to see the dismissive big gun at Studio Lambert was a particularly low point, ending with him emailing my ex boyfriend to say this thing, "Would never work." Calling my lovely brother Will an extraspecially rude 4 letter word last week was pretty diabolical too. Eating crisps for two weeks in America in bus was not good for my digestion, impending middle age spread or skin either.

However, I have also had some phenomenal support from some incredibly cool, capable people, and to list them here would take for ages and ever, from people who've invested, to Virgin for blessing us with flights and Tom's most happy day upgraded to Upper Class, to the RV people for overlooking a couple of lorry coloured smears on the bed bus. Just yesterday I sat with a bunch of fearsomely brilliant male journalists and photographers who all cheered me on and offered to help, to all the people who came to party and pitched in with the fundraising, to my Mum, Dad and Stepmum and siblings, Amy, Georgie and Ben who have given everything from, love, support and Sam Taylor Wood prints to auction off to hours of time helping the party go with a bang (Amy, 4 months pregnant, moved two gigantic pink horses in to Westbourne Studios to name just one of her acts of perfect kindness). My sister in law Tiff who has let her husband run off on this passion project which is unlikely to pay bills for some time, and may, potentially, never at all. A scary prospect when you have a little family to raise. James, Ben and Leigh, the second unit are all working for de nada but shares. Just knowing that people read this blog and enjoy it is humbling frankly. I won't bang on. This has been a life affirming and evidence of the deep good in people. And then there's Tom, who I have watched step up to the plate in a way I couldn't ever imagine he was capable of really. Tom, interviewing a hairy scary roadie? Incredible. Will and I are bloody lucky to be on this ride with our brother. And this good in this far outweighs any shittiness.

I'm going to eat my bodyweight in cheese in a place with no wifi access at all for a few days. Once I'm back in the real world, I'll get back in the room with this bloggy blog thing.

Happy Christmas
from the Mission to Lars
goons

Metallica and U2

2009-12-23T09:14:00.000-08:00

Will and James reckon I shouldn't reveal too much of what actually occurred between Lars and Tom and the rest of the band, because it'll make people more curious about coming to see our film. The concept of people 'coming to see our film' is quite a remote one, and I'm going to think about whether I should tell the whole story, including Tom fascinating interaction with some of the other, less friendly, people among the band.

I'm going to think about this over Christmas, and debate it with William and Tom in Cornwall when I finally get to see them tomorrow. It'll be interesting seeing what frame of mind Tom is in and whether he feels extra close and bonded to me and/or Will, or whether he'll look down his nose at me/him/us for being such berks on the road.

Actually, the family 'mare seems to be dissipating now. The main concern is how to recreate the best bits of family drama that were not caught on camera. (such as previous post, Fight! Fight! Fight!'s, Do you want to go to Bristol? Do you want to go to Devon? Do you want to see the back of me and Will?)

The extremely genius Michael Holden came up with an idea yesterday over lunch, which would tip the film into the comedy documentary concept; I'm not sure how I feel about this. Laughing is a thing very dear to my heart, an addiction some would say if it was not so good for you. So to write a comedy documentary that was not actually funny would probably be my idea of a complete and utter shame disaster.

My whole family love laughing, but the Spicer's two most juniors - Georgie and Ben - are the two I have had the biggest with in recent years. One Christmas the three of us were driving home to Brizzle and we were laughing so hard the tears were squirting from eyes and I could barely see the road. I had to pull over to the slow lane and take it steady til the good times had become a little less hysterical.

Tom loves a laugh, and he has a strong sense of humour, which is actually pretty evolved and crucially very much his. I don't want to sound patronising but he is definitely a more naturally funny guy than my ex-boyfriend. Will said to me when we were on the road, "I'm worried that this trip isn't containing any laughs." I could only agree. Poor Tom, a roadtrip with no laughs. What's the point of it? What is the point of a roadtrip with no laughs?

I suppose laughing at us rather than with us will have to be our hindsight giggles.

I've got to go and buy some really expensive cheese now, and take my extremely jaded, tired ass to a family christmas which I hope will prove rejuvenative and not combative. Word on the family street is that Tom seems confident, his speech is good, and he's on the toppest of top forms. Looking forward to seeing him very much, in the knowledge we just shared a nutso adventure

My film rec for seasonal joy is Metallica's Some Kind of Monster, in which the ultimate line, "What would U2 do". Heavy metal's called that because of the high levels of iron(y) it contains

FIGHT! FIGHT! FIGHT!

2009-12-18T04:01:00.000-08:00

Seeing Tom off to Bystock

I had put a bottle of wine in Tom's suitcase, which duly broke, pissing Will off when he got home with Tom after we landed. The next morning I was ten minutes late coming down to the car that they were waiting in, I'm not going to make excuses because then this'll look really bad, and actually, it's slowly becoming what it is, funny.

But everything was sort of OK, and I said sorry for being ten minutes late, and I said sorry about the wine, but I don't think in a sorry enough way. On the M3 Will and Tom were upfront listening to The Crooked Vultures, which are a pretty loud bunch of music makers. Will turned it up loud, and I thought, this is weird, Tom's just spent a year telling us he hates things that are too loud. It wasn't too pleasant but I could tell I was in the shit for basically being a fucking annoying sister for two weeks, and not just for being ten minutes late this morning. There was what they call 'atmosphere' in the car. Rather too much for my liking. I'd have rather sold some of the excess atmosphere off to raise some more money for our overbudget film (still waiting on a five figure sum from investors who have yet to deliver the cold hard cash, it keeps me awake at night. Christmas is a bad time to chase people.).

Anyway, I swallowed it. Will's a more solid, likeable, reasonable guy than I am and I tend to defer to him on matters Who's the Idiot.

However, the discord that built over the weeks we were away seemed to be a two way street, we grew to have a very angsty relationship at times. James (Will's business partner who was co-directing with him) said more than once, "God, I'd hate to have to film my sister, fucking nightmare." Which made me feel great about myself. I in turn, was not being terribly helpful at times, and felt ridiculously insecure and had a thin grasp of the technical side of what they were doing yet chose to offer my opinions at any time urgently pressing them to film something that happened ten minutes ago. I can see that I was hard work.

Ah there were layers and layers to this thing, and it was bloody hard work getting our heads round it, and I judge none of us. It was a pretty nutty environment, there was a lot to do, but as Tom's big sister, I did want to keep things kind of mellow. Yet roughly every three or four days I would lose my temper and make things momentarily not very mellow. I never go out with guys long enough to develop my freedom to holler around them. But I have been going out with my family long enough to do it, and I could not fail to notice that under stress I have a tendency to start yelling. Bad look.

The second unit seemed fine, we were all tired and were developing scurvy through poor diet. I think we all slept in our clothes several times. But they were fundamentally sane. We were in a family vortex. Families aren't really designed to spend two weeks together working their collective nuts off in close confinements while driving down bad courdoroy cement interstate highways in a bloody great bus with beds and glassware in.

Tom, at this time, was my only friend. James and Will and I got on fine, but I could smell their frustration with me at times. And I don't know that Tom even liked me that much either by the end of it.

Anyway, I digress. There we were, barely slept, very tired, all in a car driving down to Devon to take Tom home. There's atmosphere. Then my phone rings. It's Monday morning, I haven't done any paid work for weeks, I am keen to use the journey to answer my phone to potential business. Will pointedly doesn't turn the music down.

It was only the repairs people from my managing agents, but, you know, it could have been the New Yorker (admittedly not likely, but it could have been). Phone down, I immediately assailed Will for not turning the music down, knowing that it was an angry substitute for not confronting me. Then he let rip and accused me of something that cut me to the quick, and may or may not have been true, I don't really know what to thing really. Then I called him a few words in a loud voice, including the C word. Tom was about two inches away from punching me and gave me one of his extremely scary, clenched fist, "Shut up, I'll get you"s

I don't know that Will and I have ever had a fight like that. Tom and I had masses of fights when we were kids, but Will was always sufficiently younger than me not to warrant that thing.

Anyway, the rest of the journey passed in chatty haze of jolly loving family banter. NOT.

As we drove up the drive to Bystock Will asked Tom some filming questions and Tom was stoney silent. What's wrong Tom, said Will, as if it needed to be addressed that your sister screaming like a fishwife might be a bit stressful and loud combined with Them Crooked Vultures at stadium volume. Would you like me to take you to Bristol, will said, referring to my Dad's place, or Ashburton, referring to my Mums. Stoney silence. Zero eye contact. And not because he's F-X, because F-X have problems making eye contact, but by the end of the trip Tom and I were holding eye contact for huge amounts of time.

Then I said, "Do you just want to see the back of me and Will" and he nodded vigorously.

He shot out of the car at lightening speed, gathered up all his stuff, refused any help, didn't offer any cups of tea, and then he was gone.

"Well we really fucked that one up," said Will.

"Yes," I said, it was the first time we had agreed in some time.

We drove back to London in complete silence. I sat in the back of the car.

I have to say I was slightly concerned about this, when I told Mum the situation in a very lite and brief fashion, with lots of, "Hey, it's fine" provisos, she, as given to taking the most exuberantly negative take on things as I am, at times, said, "There isn't going to be a family schism is there?"

I had suspected my brother found me laughable for a while, especially since he had kids and grew up, while I was Peter Pam, but fundamentally we have a great deal of love for each other and I don't really mind if he finds my life risible; it is a bit silly.

If I lived in a small town my activities would look incredibly sad, but the thing about London is there's loads of juvenile adults around behaving like me so within that context, I'm fine.

Anyway, I digress from the story in hand, yet again.

I'm not sure I could have told this tale so soon after our return and while it is still reasonably fresh and stinging in my mind. But having told the story, both pragmatically and flamboyantly, a few times, the general opinion has been, sounds good. My mate H, who doesn't hold back with her opinions, said, "I had worried your film was going to be a bit "Make A Wish Foundation, we're lovely people doing a lovely thing for our brother"."

My laughter was so hollow you could have put it under the Thames and driven rush hour traffic through it...

Of course I love this film, and I believe in it. But I equally understand that it comes more from punk than primetime spirit. The BBC had turned us down because, partly, apparently, they didn't think I was emotional and warm enough. Admittedly the three or four times I felt like crying I didn't, because that's what normal people do and I am not on X-Factor or Miss World. But there was definitely plenty of emotion.

Oh yes.

Looking forward to Christmas with Will and his family, and our family, and several others. Safety in numbers eh?!?

Love and peace to all men and women, especially brothers and sisters x

Coming up: filling the gaps number 2 and 3. James Hetfield and following Lars on stage

2009-12-15T15:56:00.001-08:00

Plus, quite how badly me and Will got on; in car arguments; accidents; Tom's best questions and conversations; our last burger; and a major moment in Falconhead cowboy boot store; and Tom's spectacular joy at being upgraded (he appreciates a bit of luxury our Tom); and Tom's last words on leaving the Mission and walking into Bystock.

Filling the gaps, number 1. The doctors

2009-12-15T15:55:00.001-08:00

The doctors

Randi (pronounced Rawndy) Hagerman is a paediatric neurologist and heads up the MIND Institute at the University of California. MIND is America's best and one of the few clinics for evaluation, diagnosis and treatment of a wide spectrum of neurodevelopment disorders including Autism, Asperger's and Fragile X, which all share some common traits (you can tell I cut and paste a bit of that last sentence can't you, but it is true).

Now finding treatments, even cures of a sort, for Autism, Asperger's and Fragile X are never going to lead us to a cure for baldness or to inadvertently turn into a really efficient way of 'curing' women's wrinkles, it's unlikely to unlock the secrets of impotency, or become a cure for the common cold or cure cancer, so finding research funds for clinical and lab based research is always going to be hard in a market that is fiercely competitive for things that affect a lot of people. Any Fragile X treatments will be what are known as orphan drugs. Drugs that do not have a big enough potential market to attract the big pharma boys to develop it and must therefore fight for private funding, government funding or money from the more altruistic research funds out there like the Wellcome Trusts. Randi, Dr. Hagerman, has testified to the U.S. Congress on several occasions that "Fragile X is a 'research portal' for other brain disorders. It is the leading-edge candidate for a breakthrough in understanding many other diseases, especially unlocking autism". But still, the quest for a cure for small breasts or heartburn will probably receive more a thousand times more money.

But I digress.

We went to see Randi, and her husband Paul, a molecular biochemist whom she corralled into helping her with the lab based research into finding treatments and causes of Fragile X.

Both of them are truly excellent, lovely, funny and engaging people. We took Tom to see Randi, it had been a typically madcap day careening about in the RVs and me generally being shouted at for slowing everyone down and not setting up shots properly - as was typical - but once we were inside her office, with Tom holding the boom mike, because by now we worked out the guy wanted to feel part of the team, and he needed to be working with us. This realisation marked a critical shift in the whole Mission, and saw Tom's far deeper immersion in what we were doing.

I sat talking to Randi who explained many things about Fragile X I never knew, including the fact that Tom's sensory perception is totally different to our own, he experiences sounds, touch, smells, tastes and sight in a way which is amplified and disordered. This would explain why he was being so challenged by the prospect of actually getting into a venue to see Metallica. She explained many things and throughout Tom nodded and concurred with what she was saying, until he got bored.

Randi took a long time to explain things to us, and I can't wait to go through the rushes and redigest everything she said. She talked a lot of how carriers of the mutated gene can experience a lot of depression and other symptoms. She reckons many more people are affected by Fragile X than is currently known. At the end of it I went and got tested; I think it's about time I found out if I am a carrier or not. If I am, it might explain why I get so bloody miserable sometimes. It might explain why certain among my family can be a bit reclusive in old age, another F-X trait.

Anyway, am sure I have written on this before.

Next day we went to see Paul, who was such a San Francisco type of Professor, I just loved him, shaggy grey hair, handsome face, wearing track pants and bouncy trainers. Insisted we call him Paul. Paul explained a lot of sciencey things about F-X on a molecular level, and explained how F-X is really only prevalent in apes and humans and that it was in our development to the higher species that the F-X mutation happened, which means, in style magazine terms, that it has greater brand heritage than even Louis Vuitton and goes back an awfully long way. It does not change in frequency among ethnicities, and there are probably millions of F-X cases that go undiagnosed in all its different forms. Indeed, relatives of ours, here in the west, have only just been diagnosed with F-X related disorders. This is an old and mysterious thing we're looking at here.

He was passionate and able to speak to me like the idiot I am, once we'd wrapped up he came down to the van where Tom was spending some time on his tod, eating some leftover pasta heated up in the RV's microwave while we were still on the move. (I got quite good at making food on the move but occasionally had visions of stabbing myself in the eye with a buttery knife or impaling myself on a broken jar of sandwich pickle) while Will and I filmed Paul. Tom, as ever, was utterly charming and smiley to meet him.

We were late for the meeting because our poo pipes as the RV's waste system were now known, were behaving in a menacingly smelly way and we had to dump them on a bit of wasteland nearby.

Later on that night as we headed towards Anaheim, we had more menacing smells, and stopped just off the freeway to release the pipes once again. Poor Tom had had another chaotic day, another day quite unlike the one we'd promised he's have to Tom's major care givers. In an effort to bring a little levity to the chaos, I stood at the side of the road with Tom while Will did a very fast three point turn while the poo pipes discharged themselves across the road. Look, the RV is having a wee I said to Tom, and we looked at the flailing pipe dangling beneath the monster truck you sleep on. Both of us cracked up, and continued to chuckle as a harried Will pulled up beside us. At last, some laughs. They had been thin on the ground on the trip, frankly.

I wish we'd filmed that bit.

After that we had a zero solids rule on the bus lav and things, aside from our sphincters, relaxed a bit.

home

2009-12-13T11:17:00.000-08:00

Tom has gone back to Will's for the night, and then we all drive back to his home, at Bystock, to deliver him back into some of his beloved quiet.

Virgin upgraded us to Upper, and Tom's delight was clear as he snuggled back into his little booth with a massive grin going, "Ah, this is nice." I don't actually know which way is up or down, so once I've slept and delivered on a bit of paid work, I'll get back to this blog with the pleasure of issuing some more intricate detail.

Someone criticised the way I don't let Tom speak enough through the blog, which is probably fair enough, I've got a bit of sleeping to do before I can factor criticism and some of the hundreds of photos we took into my posts.

Love and happiness. x

midnight, orangetown rv park

2009-12-12T00:43:00.000-08:00

i've barely touched on what has happened in the last 24 hours or so, and I have a heap of pictures to post too. As soon as I am out of this RV, cured of my scurvy, and back in the world of freetime, I will try to adequately explain way way more, and more besides.

Listening to Tom and Will saying goodnight to each other next door in our motorised home, with many mentions of Lars, as ever, I feel so blessed to have had some QT with them both. So Will and I fought a lot, true, but we've created a world of understanding between each other that we never had before, and if this film never makes any money, well, at least we have that.

Everyone on this film, and everyone who works on it as we enter the post production phase, has worked for shares, which could conceivably be nothing. Yet their passion and dedication has been as if they were working for real live high quantity, smell me, money.

Lovely.

Really, very very, lovely.

Mission Accomplished

2009-12-11T19:33:00.000-08:00

It's over a year since we went to the special Metallica show at the 02 in September 08. The day, well, night, the seeds of the Mission to Lars project were sewn. Tom was there, we went through murders coaxing him there, and it took him hours to be brave enough to even enter the box high up miles away from the stage. But the deep deep joy he got once he was watching the show will be etched on my memory forever.

At that show, Will, Amy and her husband Rich, Tom, Georgie, Me, and Will's business partner, and co-director on this project, James Moore. Also Frank, an American guy who owns a box at the 02, who generously hosted our entire family (minus Ben) plus friends to create a safe safe place for Tom to gingerly approach seeing his favourite band live. If Frank hadn't done that, there's no way Tom would have stepped down into the main arena.

Crowds and noise and the unknown are three things Tom really hates; the nature of Fragile X syndrome's effect on his sensory perceptions means that he is hypersensitive to these things. One doctor explained it to us as what we see, but ten times more intense, and with no real ability to process and order what you are experiencing. I haven't explained this too well, but suffice to say, going to a Metallica gig is very challenging for our brother, Tom.

Which makes what happened last night all the more intense.

Tom was really quiet as we drove from Bear Mountain to Anaheim, he kept saying he didn't feel good, asking me to touch his forehead, when we finally got to the Orangeland RV Park, 'The Best RV Park in America' apparently, we were all pretty nervous. Tonight, at the Honda Arena, we were going to meet Lars Ulrich, drummer and founder of Metallica, hopefully, nothing ever seems to set in stone with big stars does it. And this was going to be the croix of the film. But there was Tom, saying he was tired, he was ill, that he wouldn't go...his face was pinched and tight, a sure expression that he was really really stressed. I felt bad. We'd talked to Mum on Skype that morning and she'd said that it was sad our trip had been so manic because Tom had been expecting a holiday in America. Mission to Lars was no holiday.

Anyway, we all went for a decent meal before we set off, decent meals have been few and far between since we hit the road in the UK, hitting the road in the US was really only going to see that situation get even more fucked up. All the crew were there, me, Will, James, Ben and Leigh...and Tom.

We talked up that we were a team, and that we were working. That we had a project to do, and this was the last hard day. Tom had been using a Zoom, which is like a handheld recording device, at the Sacramento show. This meant a) he felt useful and not like a specimen in the lab and b) he could wear headphones that would order the auditory chaos somewhat and give him a sense of calm in a storm.

Despite his pinched grey face, he sort of seemed ready to go, reluctantly.

We got in a cab and headed off to the venue, the two crews splitting up. As soon as we were there Tom was very alive, very curious. We entered the venue through the loading bay, surrounded by the beautiful red Peterbilt trucks Metallica use. we farted about trying to sort out our passes and then were in. Immediately we were herded to a catering room and told to wait the hour or so til we were scheduled to meet the Man.

There was a notional sense of 'fob off' at this point, but I think that was because we really didn't know what was happening and what to expect. We immediately left the catering room and started bumbling about backstage talking to people, some of whom were very cold and dismissive, others were friendly. I felt pretty embarassed, Tom was on fire though. He was sticking his zoom in everyone's faces and asking questions about everything. I've never seen Tom so animated, confident and curious. How much does this weight what does it do how many of them are there what goes in there where do you live. Incredible. At one point we were talking to Lars' drum tech, and Tom asked something I couldn't understand, I was frustrated because I haven't not understood what Tom is saying for ages. With hindsight, I realise it was because Tom was asking really complex questions, for him. This happened more than once. Most of Metallica's crew were really very cool with us; there was a fair bit of attitude, their head of security Tom, who our Tom was absolutely entranced and fascinated by, had no interest in meeting us at all and we kept being told he was busy or wotnot, but I know for a fact he just didn't want to talk to us. That's fine. Whatever. They're a metal band not a the Citizen's Advice Bureau.

Warren, their radio plugger, was in charge of us. He seemed to quite hate us a lot of the time, then at others he chilled. You probably don't want a 6 strong film crew blundering round your backstage area at one of your hometown gigs, particularly when you don't really understand what it is they are up to.

But someone had told everyone backstage to expect us to be there, and every now and again someone would say to us, 'I've read about you'. I guess because we were in their show itinerarys. You forget how moumentally organised a big operation like Metallica has to be. Like, those hundreds of black Metallica balls that drop at the end of the show, someone has to blow them up. Right?

Eventually we were herded into a closed off bit of dingy corridor and we sat there for nearly an hour. We were laughing in the end, thinking, this might not happen. Tom was joining in, saying the odd, "Where is he? I'm going to go in a minute", which was funny.

I've got journalist friends who have waited three days for interviews with musicians and actors, so, you know. A wait is to be expected.

Then, boom, he walks in the door. five foot seven, bundle of friendly energy, skinny jeans, little white hipster jacket.

You gotta see the film to hear some of the banter, but he was a very cool dude. Very relaxed and giving with Tom, funny, interacting with the whole crew, who Tom introduced them all to. Tom and I had been cribbing a few questions to ask him, and Tom buckled a bit under the pressure of that. What's your first question Tom, I said, he froze a bit then said, "Are you married?" Well, Tom has known that Lars' girlfriend is called Connie for some time, and our first question was, "How's Connie", this was the one question he was adamant he wanted to ask.

Oh well.

Metallica had a bass player in their early days called Cliff Burton who was killed in a bus crash while they were on the road in 86. Tom often talks about Cliff, saying, 'he died', but I wasn't expecting him to bring it up with Lars. That moment was a little awkward. He also talked about James Hetfield a bit, which I felt was a bit inappropriate as the night went on because I realised that the rest of the band weren't terribly interested in Tom. I dunno, why should they be.

Tom's face was a rictus of joy through the time we spent with Lars in the corridor. And Lars was good with him. Then he offered Tom a chance to play the drums and we went to the mythical Metallica Tuning Room. The Tuning and Attitude Room as the sign outside said, is where the band go to jam for an hour before their shows, they don't do soundchecks, just this T&A room. We went in and I think Lars didn't want us all in there, but Tom insisted all five of us traipse in and be with him, so traipse in we did.

Lars played Tom the opening bars of Enter the Sandman, Tom's favourite Metallica tune, then offered the sticks to him. Tom shook his head, too much, too scary, too challenging, too much opportunity to be shown up and look stupid, I knew where he was coming from.

Go on Tom, several of us said, including Lars.

And he did, he got up there, and very softly hit a few drums.

Leigh, the cameraman, said he choked up at this point, having been on the road with Tom in UK and US, he knew how poignant this was on many levels.

There is more to this story, but I have to go now. I've been keeping the boys from our celebratory dinner, and they're forcing me into a cab

...more to come...

It was an odd feeling. But interesting.

Bear Mountain RV Park, Bakersfield. Eugoogoly worthy efforts

2009-12-10T10:27:00.000-08:00

So we arrived in dark, going, where the bleep the mountain, all flat roads and the stink of cow crap from what we can divine.

But actually, woke up this morning with a mountain in the fuzzy distance so this RV park, just off freeway, as usual, deserves its name.

Tom, Will and I had a Lars YouTube binge last night and got ourselves hyped for tonight. Tom wants to give Lars a present, so we are making a stop en route to buy 'posh wine' because we read on the Metallica website that he likes dry white wine to drink, as well as tea.

We have a short list of questions to ask him. Will he grip, grin and fuck us off. Or will we get some primo heavy metal drummer access for us to take home and talk about for the next, ooooh, 40 years.

I expect this trip to be mentiond in every one of our eugoogolies.

Slight tension, Tom keeps saying, "Don't feel so good", which could indicate a bottle out at the final hurdle.

But I'm staying positive.

The bruise in the middle of my head is throbbing, and I look like a little elephant. I won't be taking any cute roadies back to my RV tonight, not that I would anyway, being with my brothers n all, and being a nice girl.

There was a full blown slagging off match yesterday. I haven't shouted this much since the Grand National.

Happy Days.

Tom was implying he hadn't had a great time this morning, had to say, there are some things that hang better in the memory than in the present.

x

really long, really heartfelt, really soon til we meet Lars. No emoticon mega enough to express how amped the RV is...

2009-12-10T01:32:00.000-08:00

It doesn’t seem right, driving around in a house, seems even less right driving around in a house with loads of washing up clattering in the sink and flying down through the kitchen, diner, sitting room, bedroom area to rain on driver and passenger when we stop hard at traffic lights.

RV life is starting to pall. Things break a lot, and those things’ll come out of the four figure deposit we left behind at RV HQ in Hawthorne. From the melted fish slice to the dyed in the wash towel, from the wing mirror busted by an angry artic yesterday to the TV that never worked, I never expected our budget would have to cover all this…shit.

This, apparently, is RV life for you.

Left Three Rivers at 6am yesterday and drove 5 hours to get to an inteview with Professor Randi Hagerman, an internationally respected expert on Fragile-X.

We spent a lot of time with her in the end, Tom held the boom mike, while I sat down to talk to her. At first I felt weird talking about FX and Tom with Tom in the room; but Randi said she didn’t think Tom minded, and she was right. Tom engaged with everything she was explaining to us about the condition, he was nodding vigorously in agreement as she described the sensory overload that is part of Tom’s daily experience. He looked proud when she described the sense of humour everyone in our family knows and loves.

Randi is a great believer in treatment, her husband Paul is molecular scientist currently devoting 100% of his time to seeking treatments for Fragile X Syndrome and the disorders associated with carriers of the F-X disorder.

As we told her about our Mission to Lars, and how Tom’s desire to see Lars and Metallica is thwarted by the challenges of his syndrome, she said that maybe a dose of Xanax might help Tom cope with the anxiety causing sensory onslaught of a Metallica gig (or should I say ‘show’, gigs don’t really have pyrotechnics and lasers, do they?). I asked Tom if he’d like some but he said, No.

Our family don’t do prescription drugs terribly happily. Randi, and her husband Paul, both commented on the marked difference in prescribing habits between the European and American continents. Amazingly, my Dad, who is a doctor as well, said to me just before we left that he would be very interested to know what drugs were being prescribed for F-X, and that he would not be averse to Tom taking them were they to show genuine benefits to Tom and no contraindications. As kids we were never even allowed plasters (band aids) so to hear him say this was a revelation to me.

Anyway, I digress from the Mission in hand.

I just got up to sort out some crockery which was flying from the cupboards and shattering on the van floor as Will hurtles around the university neighbourhood of Sacramento. After picking up the broken glass I then walked into a bit of bus we hadn’t put away this morning after sleeping and now I have a huge bruise waiting to bloom and swell across the bridge of my nose.

My nail varnish is chipped, beyond the type of punk glam chipped that Courtney Love might’ve sported in Hole days, it just looks rubbish. My hair is just hair, hanging off my head. California is experiencing a cold snap, which has even taken the locals by surprise. Needless to say no one is wearing the flip flops or pretty little frocks they packed. It’s the same smelly pair of jeans day in day out, and if its really cold, I sleep in them too.

Another five hour drive tonight, from Sacramento to Bakersfield, en route to the Anaheim gig Thursday night. This is such a pile of shit from moment to moment, James and Will find me annoying, Will and I are meant to be exploring our feelings about the trip on camera but instead there’s some weird vibe between us, it’s cold, the money’s low, the food’s periodic or junk, the RV is a big rattling headache (quite literally at the moment), the toilet just exploded, and my Mac just crashed permanently after it was thrown from a cupboard in the RV. My skin is really dry. We all have lips like sandpaper.

The bigger picture looks excessively brighter. We are having real time with Tom, we both love him, and always have. But as personalities we are more three dimensional to each other. I don’t really know what to say about Will and I, we’ll get over this I expect, it’s not really about us anyway. But in terms of our relationship with Tom, things are good. His speech is getting clearer and we talk about all sorts of things.

This morning Tom came outside the RV (in the RV park next to the freeway in the industrial zone of Sacramento) where I was drinking some coffee, and he saw some leaflets about FX on the table that I had picked up in Randi’s office. He swept them off the table, saying, “That’s rubbish.” No its not I said, its interesting. There were details of early onset menopause, the degenerative shaking and various other things related to FX, not just stuff about the full mutatetd form of the syndrome, which Tom has, but also things that carriers of the permutated gene get.

“Rubbish,” he said again, “throw it in the fire, burn it.”

I did throw the stuff away, and I’m sorry that he took it personally, but I am glad we had that little exchange.

Later that morning we had a conversation a two way discussion, not just a yes, no, with me firing easy questions, or him firing equally simple, if not easy to answer, questions like, Lars, he’s strong isn’t he? These were more observations. I wish I could remember what it was, this is the effing problem with making the film, its all a bit of a frantic blur getting everything done, its even more of a panicky blur for Will and James, setting up cameras and downloading data all the time.

No, I’m not going to pretend this is fun very often, if at all. But Tom’s going to meet Lars tomorrow, and he’s going to get a drum lesson.

And Tom is having some majorly mad experiences. Last night at the Sacramento gig he came along, with the promise of steak for dinner and an awareness that we are all working together on the film and that he is a big, the most important, part of making that film. He took a sound recording zoom and headphones and recorded everything that happened. The headphones and hearing the sound fed back through the machine, I think, removed some of the alarming aspects to the sound. And Tom came alive, he chose who we interviewed, he asked questions, when we stopped and had a beer in the backstage bar, it was him chivvying us to drink up and go and collar a guy standing at the bar. Well, the guy only turns out to be Kirk Hammett’s builder, and he tells us where all the band live in and around San Francisco.

He was a cool guy. Tom has a knack of picking cool people to talk to, including a scary looking muscle with shaved head and tattoos, called, appropriately, Tom. Tom Spicer had been talking about wanting to meet Metallica’s bodyguards, and here we had one. He said he knew exactly who we were but that he wouldn’t talk to us unless the band said it was OK, so I said, well, we’ll be at the next gig, at Anaheim, and he says, OK, well I’m sure we’ll talk then.

As the night progressed Tom would occasionally look through he curtains to the stage, loud and thrashy support acts would grip him momentarily and then he’d return to our backstage trawl.

When Metallica went on stage he stood, some distance from the curtain, looking through a crack of a few inches. He’d move a step or two closer and stop again, holding his recording device ahead of him and constantly unknotting his headphone cable.

He moved almost to beyond the curtain and then said it was time to go and have that steak. I tried to push him a little, verbally, I might add, and before long was rewarded with The Polite Bird, the one fingered salute that Tom delivers with his index finger.

There was a lot of faffing about as we waited for the other unit who had been filming the gig to show up, when they did someone played back the recordings Tom had made that night, including a bit where James Hetfield is talking to the crowd. When it hit that bit Tom was ecstatic, his voice rose an octave and he said to me, clear as anything and with rich, joyful delight, “James Hetfield’s voice is in there, it’s in there, James Hetfield’s voice is in there.”

Just writing this makes me want to cry. To see my brother’s deep deep delight and his sweetness and childlike joy, touches me on so many levels I don’t even know where to start.

We drove around for hours trying to find somewhere to get that steak so late, I was worried the masses would vote for going home and flopping into bed, but eventually, fantastically, we found BJs, a big ol joint, still serving food, including one steak dish. Tom got his steak and he really really deserved it.

Earlier that day, after Randi’s office, I decided to finally get tested and see if I am a carrier of the FX gene. They took about a ¼ pint of blood and I chose a Tasmanian Devil plaster to cover the puncture.

I didn’t really think that much more about it because we lurched into another crisis and appointment to be missed if we didn’t fire up the RV and get the hell out of there.

But that night, after watching Tom backstage and watching him slowly and systematically cope with the fears thrown up by his syndrome in order to navigate them to meet his hero, Lars, it came back to haunt me in my dreams.

I dreamt I was in Nazi Germany and that I was with two children, only one could be protected and shielded from soldiers coming to rout them out and take them away to their death, one of the children, it wasn’t mine, was more precious to me than the other, but the other was deemed more valuable. Knowing that the soldiers were coming, I felt the grip of imminent horror about my chest and burst into tears, which woke me up. I’ve only cried in my sleep a couple of times, crying is not something I do too frequently. I woke up and shook the dream from my mind, but I couldn’t stop crying. I wrote some things down in that sketchy, note like form you do at night.

Looking at them this morning they added up to something about the horrors of conceivably aborting a Tom should I know I were carrying a FXS child; they added up to perhaps preferring never to know if I am even a carrier than to think about Tom in terms of being an unwanted thing.

Then I cried as I thought about all the times I shouted and screamed at Tom as a kid, and knowing now a little more about how his mind works, I thought about how traumatic that must have been for him.

There are still millions of kids and families around the world living with FXS in some way or another. Randi reckons around 1/500 males are affected by FXS in some way, and as many as 1/130 females are affected by it in some way. Admittedly she needs to find funding for her research into FX and is keen to present it as a widespread problem to help find treatment for, but still… This could be merely some anxiety or depression, or it could be a full mutation, low functioning boy severely affected by fragile x syndrome. Regardless, these statitstics are incredible. I have learned more about FX from Randi and Paul Hagerman in the last 24 hours than I have learned in an entire lifetime of living with it. There are millions around the world who have FX running through their families who have no explanation for their father’s shakes and memory loss or their sister’s high anxiety of their son’s profound disability.

Fragile X isn’t even known much about about by some neurologists.

Mad, isn’t it.

OK, I’ve been typing on the RV for ages now and I think, on top of all the other significant discomforts, I might be sick if I don’t stop.

Time to ‘Leave it’ as Tom would say.

You know, there are 100,000 words and more I could write tonight, but RVsickness stops me, plus, I have to give the computer back to the crew to do important things with.

Safe to say, Tom is AMPED, PSYCHED and exceedingly excited about tonight. We meet Lars at 6.45. What happens then, who knows. When Tom Spicer met Lars Ulrich. Now that is something that I would really really love to see…

Watch this space

Love

we're famous.com

2009-12-10T01:24:00.001-08:00

http://www.t5m.com/kate-spicer/

getting tom closer

2009-12-07T22:53:00.001-08:00

Tomorrow we drive 5 hours to Sacramento, to see the world's most preminent expert on Fragile X, and, then to see Metallica in the evening. Still Tom refuses to go to the shows, but talks excitedly about Lars. We watched some Metallica stuff on YouTube tonight, and he disappeared off into his happy Metallica place. We've worked out the best thing to do is to not talk about the whole deal too much, just let him talk about it when he's chilled. If we go on about it he gets weird and defensive and steadfastly refuses to do anything at all.

This morning we skyped my Dad and Stepmum, they talked to Tom and he came out of it a bit bigger and braver and bolder about continuing with the Mission; I showed him the photos I took at the Metallica show I went to in Vegas and he was really excited, insisting I send photos of Kirk and Lars to all our friends and family. We gasped at all the pyrotechnics and I showed him a setlist one of Metallica's people had given me at Vegas. This all caused great glee, but still, "No, leave it, too loud" when I suggested that we go to the show in Sacramento.

How about we just meet Lars then, I said, if we can make that happen would you come and then you don't have to come to the show if you don't want to? Yes, yes, he said nodding. This is progress, two days ago he wouldn't even discuss it.

Tom is so frustrating. He's asked me ten thousand times if he can meet Lars, asked if he can see Metallica, and when it comes, suddenly, the anxiety and fear inherent in his syndrome, sure, but also in all of life, kicks in and the shutters come down on his dream.

Coming to Three Rivers was a smart move, we've had 24 hours of proper chill time, sitting in the RV in the pouring rain drinking tea and eating normal food like pasta and cheese with peas, instead of anxiety causing fatty snax. Tom's mellower and more at home, he's more in charge, bossing the crew around and even being director a couple of times today, filming Will for a change, instead of Will filming him.

Will had to take some time out from filming Tom, he said his brother's pinched victimised face every time the camera was stuffed up his nose again was breaking his heart. The little bit of time out has restored some unity to the RV and things are gentle and settled again.

We need to be an anxiety free zone, Will and I need to be soft, kind, smiley, normal and mellow, and then we will make Tom calm and confident enough to confront his big dream.

I keep looking at Tom, the big fella, and I want to squeeze him and give him lots of love and support. He's the sweetest man you could ever hope to meet, in fact he has just made my bed, which I am going to get in to as tomorrow is a big busy day full of driving, preeminent professors of neuroscience and heavy metal legends, and the usual arsery pokery with the bloody fucking recreational vehicle.

love to you all, thanks for listening, watching, whatever, will get some pix up as soon as I get to a laptop which'll behave itself around jpegs x

what's occured since three days ago?

2009-12-07T15:52:00.001-08:00

So, we arrived, finally, at the RV hire place, where Jennifer introduced us to our enormous RVs. Tom has named the buses Heavy Noise; we have a big one, a really big one, it has a bathroom you can swing a cat in, a big double room out back and a dining table that turns into a bed.

We were shown round the buses by a German lady very briskly, there was a lot of complex detail about how to get our 'dirty water' out of the bus. I didn't compute and ordered the boys not to do any number twos on the bus. we hit the road, and before we'd even made our first stop, both my brothers had done big jobs in the bus. I was livid.

We drove miles that day, about 300, from LA to LV. We got very lost and the satnav ran out and driving down Las Vegas Blvd aka The Strip, with the lights of Vegas bouncing off our bus windows, we were an extremely stressed family unit.

We finally arrived at Sams Town RV park in a place called Boulder Highway in the 'burbs of Vegas, it was opposite, across 8 lanes of highway, a huge Walmart. We had barely eaten for days, were constantly hungry, bolting down cokes and potato chips (crisps, yes I do speak fluent American) at occasional gas (see, I told you, fluent!) stops. Finally, we had access to real live food.

Tom and I went shopping, attaching a camera to our trolley, I let him do all the choosing, only butting in three times (once, when I swapped wholewheat bread for double fibre bread - everyone was v constipated; twice, when I swapped an aussie merlot for a californian pinot noir, and third time was when I just would not allow a case of vanilla flavoured coke to enter any basket of goods I might be associated with. Other than that, bossy sister held off and Tom worked his way round the vastness of Walmart picking up pumpkin cookies, fresh coffee, teabags, agave syrup (my mate mamaly turned him on to this when we were staying with him in belair, its like healthy sugar), some juicy weiners, alcohol free beers (which came in very useful when Will was arrested for shooting a stop sign, and the cop said, "Sir, Is that a beer bottle I see." Will said, "Sir, yes Sir, it is a beer bottle, but it is a non-alcoholic beer." The police officer was very interested in this and said, Oh, I didn't know that stuff existed. In the end he waved us on with instructions for how to get to our next RV park, the delightful, if very very wet, Three Rivers Hideaway at the gateway to Sequoia National Park.

Anyway, I overstep myself.

Will and Tom stayed in the night after we arrived in Vegas, watching Allan Carr and Harry Hill dvds on the laptop (our RV telly never works) and eating wieners. Will's partner and co-director, James, and I went to see Metallica. We got pissed up and had a laugh, ending up drinking strong booze in a bar at Ceasar's Palace with the appropriately random cluster of folk around us. I got in at 3am, really really drunk (it hits you like that when you haven't eaten much more than wotsits for 4 days), and fell into my dining room table/bed, out cold. I felt a lot, lot better in the morning, a lot of the stress had shifted. Even though Tom is still in a, 'the show's too loud for me' mode.

Tom has been in a very anti going to any shows state in the last few days. He's just spoken to my stepmum and dad, and things are looking slightly more upwards. he is now agreeing to go and meet lars, but he is still refusing to go to a gig, because he doesn't want to deal with the volume. We've talked ear plugs and headphones over the top, still, no no no no. leave it!

Off to buy cowboy boots for Tom now. And maybe a hat. Or maybe he'll just say, Leave it! Again!

So much to say, hope this comes across in a not too disorientating fashion.

PS. One of the boys, I won't say which one, just did the smelliest fart ever, I have to get out of here

Metallica, Vegas, 5/12/09

2009-12-07T03:36:00.001-08:00

By the way, went to see Metallica last night at the pretty new Mandalay Convention Centre at the end of the strip, on the site of the hotel I stayed in the last time I came here which was blown up 3 weeks after I left - hence I got the presidential suite for about $75 a night.

Tom didn't come.

Will and James were going to go and see them, but when we asked Tom who he wanted to stay home at the RV with he said Will.

They are such a tight, professional unit. That's what 25 years of touring does for you.

They don't have the egoes of a rolling stone or a u2, not on stage anyway. there's this attitude and yet this deference to their fans which I find completely respect-worthy - it's late, my vocab left me some time ago. still the set is sharp and focussed and they sound great live. I'm not really that into Metallica, I'm a Chicago House Bob Dylan Smiths plus cheese type person, but they are an incredible band to see live. I kept thinking about the time I saw Babyshambles live. And laughing to myself. Pete Doherty v James Hetfield in Celebrity Death Match.

Knowing how much Lars has 'reached out' to us, as the yanks say, I watched him at work with his pots and pans with a renewed interest. He's given this Mission his blessing, I know that because I have spoken with his staff and they clearly don't really get why the fuck they are having to help us, but help us they are. To the point where I asked today if we could park our RV with the crew backstage in the car park at the Sacramento gig, thinking this would get Tom that little bit closer to the place he needs to be (he ain't playing ball right now, biggy big time), and they said, quite possibly.

We are getting extraordinary access and priviledge and Tom's just no no no no no all the way.

Dude. We're fucked. Tom's Mission to Lars has become Tom's Mission to Avoid Having to Meet Lars.

I know why this is. He's unsettled, unsure and a lost. Will and I asked all Tom's major care givers to give us lists of dos and don'ts.

So far we've done all the donts and none of the dos. we're totally fucking useless.

The thing is, if Tom doesn't come and meet Lars soon we're going to look like those star fucking munchausens by proxy type parents, who use their sicky kids to get to meet famous people. As seen on Little Britain, and described by Steev Toth when we went to see him. he talked about parents getting hook ups with bands because their kiddy was dying or suchlike, even though the kid didn't give a damn about meeting megadeth or the orb.

got to go to bed.

devil horn salute and all that.

x

ps, never looked so shit in my wholelife. RV living is rough. nice when you're at a festival. nasty when you actually have to drive

Sequoia National Park, CA

2009-12-07T03:19:00.001-08:00

Just pulled in to the Three Rivers Hideaway campsite, a six hour drive (with a few stops for fatty foods and gas, and a 90 minute wrong turn) from Vegas. So much has happened since I last hit the blog, and I'm too tired to arrange my brain into a sequential orderly shape right now. Will keeps hitting the buttons that pull the extension bits of the RV in and out, so I'm sitting at the table that turns into my bed juddering back and forth like an old lady on a stannah stair lift.

I'll spill the beans about the last couple of days tomorrow morning. For now let me leave you with some serious concerns I have that are not related to the Mission (about which I have some major and multiple concerns but more about that later). And those concerns are: American foodstuffs.

America has an obesity epidemic because it does not do meals. America turns everything, even its meals, into a delete as applicable fat/sugar/salt/starch centred snack. Wandering round Walmart buying our supplies, everything looked like a snack, everything was a snack. Everything contained corn starch or fructose syrup or similar ingredient, even the yoghurt. Surely a fermented milk product doesn't need xanthan gum or modified corn starch. It's a sad thing when corn starch has to be modified, which then makes corn starch something like a 'natural' product when it is in its unmodified state.

Oh God, I'm tired.

Anyway, if everything is packaged, presented and generally put together like a snack, then how do you know what a meal is. If your life consists of snacking and no real meals then you just eat continually.

Yes, I am very tired.

I think maybe best I start this again in the morning when I can be significantly more erudite. And hopefully I will have stopped snacking by then because the modified cheese flavored corn starch coating on my indiana popcorn is making my fingers stick to the keyboard.

Right well, time to turn my table into my bed.

x

Heroes (Ed: by The Georgie Spice, Tom's youngest sister)

2009-12-04T12:44:00.000-08:00

My brother Tom has the best morals of anyone I know. He knows right from wrong alright. He is also innately tidy and organised and makes it very clear how unimpressed he is by my general messiness. Tom jolly well likes a good cleaning session and, well, it’s not that he enjoys it particularly but that he has such a deep sense of morality, respect and self motivation. Mess is unacceptable to Tom. When he comes to stay at Dad’s his packing and unpacking of his suitcase is military. It’s always been that way. I remember my first visit to Tom’s home Bystock and being blown away by what a decadent building he lived in – with all its giant antlers on the walls and the grand sweeping wooden staircase. Tom I’d love to meet your friends I said “don’t like ‘em – Nutters” he says. That’s not to say Tom is unpopular himself, quite the opposite. I remember how Tom confidently showed me around the grounds of Bystock farm and he regaled me with a story about a Christmas time where there was some “wringing of turkey’s necks” on the farm; with which he would make the wringing gesture with his hands and the cracking sound with his vocal chords in ever such a perfunctory way. Another memory I have is of attending a Bystock Christmas party - I couldn’t believe my eyes as I saw my brother rocking out to Metallica on the disco floor and having an air guitar showdown/dance-off with a buddy.
It was clear to see how music released him, as it does all of us, and it was brilliant to see him so free. Tom’s wing of Bystock was always immaculate and he would proudly show off his prized collection of Heavy Metal and Rock music; Metallica and Lars being at the forefront of his passion. Also held in high regard was Tom’s Blade DVD’s. Wesley Snipes was a bit of a hero to him - A tough, stand alone vigilante. Tom has always had a rapport with strong male role models – from our uncle Pete with his band in Devizes ‘Rough Justice’, to my ex-boyfriend of 6 years, Antony, a security guard. The excitement in Tom’s eyes as Antony would tell him about catching “bad boys”. He would get Antony to tell him stories over and over again! Antony was very respectful of Tom and was never patronising towards him. They would spend hours ‘touching fists’ and sharing stories over a beer. Tom just wants to be treated as an equal and have a laugh with his family and friends. The night he DJ’d at a family Christmas a few years ago was genius. His eyes shone, he danced and engaged and we were one.

I attended Alex Proud’s Rock the Boat at Proud Camden this summer. It was a night for those with learning disability to get their “rock on”. I was down right impressed by DJ Tim Westwood’s punctilios attention to the crowd. The night was awesome, the energy in the room was vibrant – a meeting of minds all there for one purpose – to let go, have fun, dance their hearts out.

Tom doesn’t enjoy crowds very much and at our sister Kate’s surprise birthday party in July we were surrounded by close friends and family at our brother in-laws restaurant in east London. Tom was the perfect host, mingling and generally enjoying the evening, as is often the case when Tom is around those he knows. After pudding and speeches Tom and I looked at each other and agreed we were going to call it a night. The 15 minute walk from the restaurant to home was an eye opening one for me. I avoid Old Street on a weekend night, as like Tom I’m not keen on crowds and feel uncomfortable around swarms of people. To my quiet surprise, Tom’s demeanour and body language was resolute – confidence radiated from him.

He was being my older protective brother.

I was stressing out trying to get a cab and Tom, head high, walking purposefully, by my side – seemingly forgoing his idiosyncratic tendency to stride ahead or lag behind.

Everyone needs a hero. Tom’s going to meet his and no one deserves it more than my brother.

Start of day one filming in USA; day after the subway adventure

2009-12-04T09:16:00.000-08:00

We have cameras finally, and once they have been rigged inside the RV we can hit the road and crack on with the Mission. Film hire in Burbank, where all the big studios are, is the friendliest you could imagine, I guess the film hire people here must be some of the richest, fattest and happiest in the world. The video equipment hire people weren't so friendly, I guess you can go figure on that one, to coin a local phrase.

Anyway, I wasn't there for the film hire. Through a sequence of confused logistics and sheer bloody mindedness and a steady refusal for British banks to play ball with our access to our money causing a general lack of what budget we have flowing into our needy paws, Tom and I took the LA County transit system, at $1.25 a ride, from Universal City to Hawthorne, where we hoped to meet the film crew at the RV hire place.

I doubt many of you are familiar with the LA County transit system, but its mighty impressive in its distance and reach. People always speak ill of public transport in LA, but actually, as a way of getting round one of the most sprawling cities in the world, it's pretty good. Only problem, you need a taxi at each end to get you on to where you have to go; and taxis are like hens teeth in LA. You have to call them, like a dentist, and make an appointment.

Anyway, we thought we'd give it a pop. At one point Tom needed a pee, and a few stops off of Compton, a very familiar location to all those who enjoy their original gangsta rap, we got out and went to find a convenient convenience. This was a very Mexican neighbourhood, and we didn't hear a word of English spoken as we scuttled, bladder full stylee, about the darkening streets looking for a loo.

We found one in car wash eventually. And headed back to the subway station; where we could walk straight back on the train with our old tickets. The LA subway system is, fundamentally, free. The cab ride woulda cost $100; and had we taken a cab I never would've had a photo of Tom on the platform of Rosa Parks station, official name Imperial/Wilmington, named after the black rights activist. I thought it apt that Tom be there, living his new crazy adventurers life. And then I remembered how close we were to Compton, and thought, actually, there is no symbolism here, you're just a really irresponsible sister.

The screeching tyres on this journey are not yet over, but those were just some of the tracks we left yesterday.

Every day I learn something new, mostly about my depths of assholness, the extent of Tom's ability, and yesterday specifically, the efficiency of the LA transit system.

Off to get the monster trucks now. I'll leave you with our journey's mission statement, as spoken by the Lars man himself, and dug out by my lovely cousin, Dickon and delivered by the postal service of f'book. We may well bump into his sister, Maya, tonight, in Vegas. You can't get away from this bloody family...

"What's the message in Metallica? There is no message, but if there was a message, it really should be look within yourself, don't listen to me, don't listen to James, don't listen to anybody, look within yourself for the answers. "
Lars Ulrich

Rock on. Etc x

Sunpower Natural Cafe

2009-12-03T14:58:00.001-08:00

So we left Mamaly's this morning and went to collect the second unit from their motel in Burbank. The guys left me and Tom to wait until we were to get a cab to the RV hire place in Hawthorne where our reactions to our monster trucks would be ready to be recorded as we have finally hired all our cameras.
We waited and waited, spending a bit of time at the pharmacy loading up with stuff, including some nuts so that any anxious hunger spikes can be sorted without resort to the endless array of fast food joints. Then we went to Donut Prince for coffee and a crap donut. After bumbling around some more - which is slow mo, aimless, purposeless buzzing I had to explain to Mamaly's LA born soon to be wife, Mae, this morning - we dawdled back to the second unit's motel to sort ourselves out a taxi.
A taxi to Hawthorne is $100.
I have $20 in my pocket and no money in my bank account and no means to change pounds because every bank I go into wants me to have an account there in order to change currency.
Don't make a low budget movie if you are already on a low budget generally. Because your low budget will go to fund the low budget movie, leaving you with no budget. If this film doesn't work out, I have a sneaking suspicion I'm in the FUCKADOODLE DOO DOO.
So, we make a few enquiries and decide to take the bus.
I've never taken public transport in LA.
The bus driver was surprised that us foreigners were taking the bus. Tom really enjoyed it, buses are a great way of seeing the world.
When we got to our change, on to the Metro at Universal City, Tom had a hot dog, and we sat in a windy space beside the 101 freeway.
Too windy for me. And Tom wanted a coffee, Bubbie's hot dog stall didn't have any so we sloped off again for a while until we found somewhere healthy to eat.
Where I am going to eat a house salad with a raw food curry dressing, and Tom is having another coffee.
Tom is an extremely mellow travelling companion. He just takes it all in his stride, and enjoys looking around. He doesn't complain, occasionally when things get stressy he says, "wa'a go now", but he doesn't make a scene.
He is currently drinking coffee with almond milk in this vegan restaurant.
He doesn't like it.
Unsuprisingly.
Tom says, "america is rubbish" but i suspect he may change his mind. also, "You should see the big cars here" and, that's it. x

Have you seen the size of the RV

2009-12-03T09:47:00.001-08:00

The RVs we're going to be travelling in for budgetary reasons, as well as making a solid base (metaphorically, so literally) for Tom to know we will return to every day so he doesn't get too confused and disorientated, are big. Too big. I've seen smaller articulated trucks.

We got a discount from the Australian company that own the Apollo Campers; but still they've worked out three times what we thought they'd cost.

We are now skating on the very edge of our tiny budget.

I know low budget documentary movies are totally hip right now. But this is little compensation for the fact that we barely have enough money to eat.

I'm going to have to cook, for real, in the RV because short of living on MacDonalds, its the only way we're going to get anything healthy to eat.

Oh God, what have we started here?!?

Tom and Will are still asleep. I could hear Will tossing and turning and stressing in his blow up bed last night, Tom's confronting his first case of jetlag in his 38 years. I repeat, Oh God, what have we started here?!?

Running round all day going nowhere much in LA

2009-12-02T23:10:00.001-08:00

the I405 in LA is so called because you go at 4 or 5 miles an hour. Flogging up and down variouus highways getting kit, trying to sort out phone and money, picking up the second unit crew, upgrading to a bigger car, flog flog flog, a bigger car without satnav. LA with no Satnav? I don't think so. Today was meant to be a readjusting day off, but it was just a day of LA flog. We went to take the crew to their hotel in Burbank, but got the wrong Olive Street, in Downtown LA. Bad. Pain in the ass, cracky crack town bad.

Tom must've been so hungry, I bought him cereals in bed this morning - me, Tom and Will are sleeping in my mate Mamaly's spare room, with me and Will on two Aero beds on the floor. Will and Mamaly described it as a refugee camp tonight, and I bet Tom was hoping for some food parcels earlier on. When we realised we'd gone to the wrong Olive Street, I started wigging out. It was going to be at least 45 mins to an hour before we found the right Olive; so I ordered Will to stop at Burger King and get a whopper and fries down Tom.

Before we left we got all the people who know Tom best to write us lists of dos and donts with Tom, things we should definitely avoid if we want him to feel comfortable and happy. We might as well have eaten them on the drive to Mamaly's last night, instead of the big bag of cheesy puffs and turkey sandwich we bought from the Mexican supermarket on the airport road.

Will just doesn't think about Tom's wellbeing in the same way that I do. In a way its good, he just expects and knows Tom can just rub along with us; I meanwhile, am in a frenzied state of trying, and the trying aspect of this sentence is key, to make things nice and easy for him.

Still, I am realising that Tom can handle a lot. Today I had a real major bastard bank issue; two calls to UK to switch of the fraud alert, about 20 false starts at the cashpoint; not able to get car out of car park without cash. Grrrrrrrrr! I ended up losing my rag on the phone to the bank (I pay nearly £20 a month for that account, Royal Bank of Scotland run by a bunch of fleecing criminals if you ask me) and could sense that Tom was getting really anxious. But even though it went outside his natural F-X instincts to stay super calm and sort of happy, he did. I said I was really sorry, he picks up other people's stress so easily, for being stressy and he said, 'It's alright'.

Still, it's been an odd day for Tom. A dinner with my friend and his girlfriend, he say quietly, kind of shy, and certainly feeling a bit outside, but also self-possessed enough to ask for coffee at the end of dinner. I was determined to make him a proper meal tonight, rice, pork, some vegetables. I will feed my brother properly, and I he will have a nice time.

After the hairy downtown interlude we took the second unit to their motel and they sat inside talking about cameras and I fucked off with Tom and we went and sat in a neighbourhood sushi bar, Tom had a fresh lemonade, even though he wanted a proper British cup of tea, and I had green tea. Tom's face was a bit tense and alarmed, but after a few minutes he relaxed and we talked about Metallica for, oooh, around 45 minutes.

The great news is that the Metallica machine seems very open to us. And as we try and sort access to venues and wotnot, they couldn't be more decent and friendly to us.

The truth is, the more they appear to warm to the project the more I fear that when the time comes Tom simply won't have the right stuff to grab it. Is it really important that he does? Is talking about it simply enough?

No, I don't think that's true, he has not stopped talking about Lars for, umm, like forever. He gets so excited when he talks about him, genuine excitement. We are already rehearsing what we are going to say to him when we meet. Tom's latest thing is to get a drum lesson from Lars, I can just imagine how much he will enjoy that.

This isn't particularly fun, I have to say. And Will and I are certainly going to scrap on and off a lot of the time, but it is worth it.

Hell yeah. Tom deserves this.

x

At Mamaly's apartment in Bel Air

2009-12-01T20:56:00.001-08:00

So, christ, what can I say. Tom went to bed rinsed, confused, lost looking and incredibly brave after nearly 24 hours awake. He sat quietly through the flight, not watching vids or looking out the window or anything. You could tell he was just way way out of his comfort zone. After endless travelling shenanigans, we arrived at my old friend Mamaly's place, and I helped Tom have a bath and washed his hair and he took himself off to bed. I hope, and I think, he'll be feeling bigger and stronger tomorrow. There were moments on the journey when his total fear and lack of comfort, were lost to his general excitement at, taking off, landing, looking out the window at clouds, or when the really lovely flight attendant, Penny, on our flight from Heathrow, came and crouched by his side, touched his knee and welcomed him on the flight. As we got off the flight she rushed through her important upper class customers to hold his arm and say have a great adventure Tom, and Tom turned round and said thank you in the sweetest and most touching way. This is an extraordinary journey. And it is only getting more extraordinary. I need to sleep now.

total bloody drama - the only predictable thing is the unpredictability of Tom

2009-11-30T16:38:00.000-08:00

Went to Bystock to pick Tom up Monday, we fly 11.30 this Tuesday morning.

We got there and Tom was having lunch with the lorry drivers up in the tea shed, he had unpacked his bag (which he had packed last Thursday) and told everyone he had an upset stomach. Just the previous day he had been excitedly telling everyone he was going to meet Lars, and now he didn't want to anymore. He avoided us like the plague; Will and I knew not to get angry, but I kind of wish I had, because we aimlessly drifted around, Tom getting more and more removed and aloof and disengaged with us, while the time slipped away tick tock, only 18 hours til we fly and Tom has unpacked his bag and claimed there is too much work in the paper shed and he can't go away.

Will went and worked on him for a bit.

No joy. In fact Tom locked the door to his room and told us, politely, to go away.

The whole place was abuzz with his holiday and now it was even more abuzz with his refusal to go.

Tom had done a disappearing act. Thankfully, for he does not always, he stayed within Bystock Grounds and was reasonably findable. He kept popping up, he's be, say, drinking a cup of tea, I would gently go to join him and broach the subject of maybe getting in the car to go and see Dad, half way in Bristol.

Nope. Then he'd stand up and walk away.

Around 5pm, after I had rung Virgin to see if they could move our flights forward a day or two (not looking terribly likely currently), I went up and said through his door, 'Tom, Will n I we've busted our asses to make this happen, we've given up paid work and generally exhausted ourselves in the pursuit of your hearts desire. That's not very nice. I'm going to go away for a while and let you think about this. Goodbye.'

An hour later after another vile cellophane wrapped 'meal' from a garage/supermarket I went upstairs and his room was no longer locked. I went in and we spoke nicely to each other. After about 20 minutes my stepmum turned up, Tom's a little bit scared of Janie. She is what I refer to as, 'the big guns', and this does not refer to her muscles. She simply knows how to make Tom do things. We chatted about the brothers and sisters and about Dad's poorly knee, about the new log burner at my Dad's house and their neighbours new bathroom.

Within 30 minutes he was in the car.

As I type Tom and Will are asleep at Dad's house in Bristol. I drove the car back to Will's wife, who had packed him and bag and bundled up his passport etc. We are meeting at the airport at 9am.

What happens next, I don't know. But I know I need to sleep.

I will keep this regularly updated on the road.

Thanks for being interested xx

Steev Toth

2009-11-27T15:39:00.000-08:00

The Mission to Lars started today next to a tea shack on the A39 to Minehead, we were on our way to see a guy called Steev Toth who has been a sound engineer and tour manager for bands including The Cure, Erasure, Alice Cooper, Fun Loving Criminals, Crade of Filth and Depeche Mode. We'd stopped for tea at PJ's Hotspot in a layby and Will went, "I guess our roadtrips started." Tom was laughing and happy; I knew, once the fundraising party was over, I'd be feeling the same way too.
Steev's recently divorced and lives with his quiz mad Mum, his son, Storm, and a couple of cats in a small village near the Quantocks. He'd just got back from a tour in Japan and he had tour manager written all over him. Full of mental rock n roll stories, drug tales to make your eyes pop out your head, and an absolute softie. You couldn't make a character like that up, he was perfect.
He was really sweet with Tom.
Tom loved the stories about how Steev has to herd naughty rock stars into bed and how they have rules on tour buses about no smelly feet and no farting.
He gave us some excellent ideas for tour bus living, our Winnebago in LA is kind of like our tour bus now. He gave us some excellent advice about how to get backstage at gigs, and how to not be a boring fan when you meet your heroes. His son Storm made an excellent cup of tea. Tom did the whole interview wearing a luminous yellow reflective jacket. Don't ask me why. That was the style he was dropping today.
Tom's excited about the film now, and about the trip. The challenges are there and real, but he's already packed and ready to go. Janet, the manager at Bystock has got his cash money and the one dollar the bloke at the pub that Tom goes to sometimes, took off the wall at the pub and gave Tom the other night when we went for pints and pork scratchings.
I've just got to get through the party tomorrow, which caused all manner of hullaballoo today as I tried to shoehorn party planning into a full days filming. I'm having this party with some of my favourite women ever; big personalities, and we've managed to get through the whole thing without one fight. But today, the day before lift off, there was simmering potential for lady punch ups over the seating plan which I've been obsessing over for the last three days.
We nearly had no wine because I forgot to give delivery advice to the wine sponsor, Journeys End, I was hurtling down the M5 talking to Journey's End's owner, Rollo Gabb (who throws the best parties ever at his family home, Stanley), who said, you've got exactly 8 minutes to sort this out.
I've got to go to bed. Or my head's gonna explode, it's been a long day, I had a hangover, and we drove hundreds of miles. If we hadn't drunk gallons of tea I don't think we'd have made it.

Enter Sandman Metallica, Moscow 1991

2009-11-25T01:39:00.000-08:00

The genius illustrator Will Broome posted this tune up on my Facebook last night:

You can't really fail to like it, the energy, the footage and the general hair dedication, the music's pretty faultless of its style. It's like Motorhead's Ace of Spades, everyone, but EVERYONE, even all the metal haters out there, LOVE IT. After 40 years of 'popular' Soviet rock - which barely qualified as a 10p tub of margarine compared to the English speaking West's French hand-churned by virgin's premium heavy metal butter. Moscow in 1991 must've needed Metallica like a starving man needs McDonalds.

Wow, laboured that metaphor to the max, didnI?

I am sleep deprived and a little overstressed, but watching that a tear came to my cynical eye. I know that Tom loves Metallica's music, his cds are all ragged and curled at the edges and when Will gave him a massive Metallica box set of cds he just used to sit 2 inches from the TV watching it and being really fucking happy. It's great that music can do that to you. I know art's great and all that, but can you get off on Van Gogh or Jeff Koons in quite the same way?

When we took Tom to see Metallica at O2 (Thanks Frank, for the box, there's no way he would have ever got in that crowd), once we had coaxed and tempted him with a trail of Stella's from the Thames to the door of the box, and fed him fish and chips, and sat quietly with him listening to him saying he was ill, that he didn't like Metallica anymore, that he was, "Sorry Kate", because he knew we'd all bent over backwards to make his dream of seeing Metallica come true, and now he was sitting there, outside the box, fucking terrified of the noise, the people, the place, the colours, the sounds, the onslaught of sensory stuff that his Fragile X mind was incapable of processing in the way we do.

Neil Mather, a tour manager for people like The Stone Roses, the Happy Mondays, and thankfully for him now, a slightly more manageable, Snow Patrol, walked past our little crew of Tom outside the box. Neil was just lovely with Tom, he just said a couple of things, but you could see Tom's confidence building a little. Frank was really cool. Neil and Frank are two guys who I wouldn't describe as girl's men. But seeing how easy and gentle and normal they were with Tom was great. (Tom needs men around him, not just women with their phenomenal capacity to care but their ability to patronise and mollycoddle a bit too).

Anyway, that's a long story, the one about getting Tom from Devon to the front of a box at the O2 covered in an entire body smile that only comes about when feel music you fucking love, live. I've got to stop on this now because the memory of it is actually making my eyes water and my throat contract and that's not very good at 9.28am. I need tea, fast.

That gig was amazing. There's some video footage (and note to self - do not try to headbang, you have not done it since you were 13, and you are rubbish at it) and you can see all the siblings rocking out together in their own style. Bonding.

Yes, even me, with synthesisers in my soul (bit worrying that, could they block an artery?) and obsession with Prefab Sprout and 70/80s MOR from Supertramp to Fleetwood Mac, and early days of tweeny rebellion spent in a Sheffield of early New Romantics (pre-Dare Human League) and guitars only really figuring large when I listened to the Smiths or Pink Floyd. Yes, even I loved that gig. Metallica deliver the proper goods.

Moments like this remind me what the Mission's All About. Fundamentally, as Tom would says, it's about getting Tom close to something we all love: "HEAVY NOISE"

All I have left to do is this, posted to Facebook by Rich Wearz: \m/(>_<)\m/

email from New York...

2009-11-24T15:51:00.000-08:00

...Lars has personally given our meet n greet with Tom the nod, now it's all down to Tom to break through his syndrome and his fears, and down to me and Will to hold his hand in the right way, and for us to Little Miss Sunshine (minus the corpse) muddle our way through California, Nevada and Idaho to meet his eternal request.
He has already started talking about wanting Lars to come to our house for shepherds pie. I'm sorry brother, that really is beyond your siblings human remit.
Now we just need to get him on that plane.
It is never plain sailing with Thomas Spicer

our fate lies in this man's hands

2009-11-24T10:14:00.000-08:00

Cliff Bernstein, owner of Metallica's management, clearly has a soft cornered heart, fingers crossed

Intents news

2009-11-24T06:50:00.000-08:00

The beautiful men at ETA have lent us their indoor yurts. Which means we'll be just a little bit like a Glastonbury that you can wear high heels to. There will be a dance tent, a church of the jevil tent and a lost in beauty parlour tent, all inside the studios, and looking something roughly like this. just trying to set up all the interviews, gigs and STUFF in general in the US and am furrrrrr-eeeeek-in out x

24 hours, ignorance

2009-11-23T15:26:00.000-08:00

that blog was a bit mean tired and defensive, i'm going to write it right now...

Bystock Bedding

2009-11-23T05:05:00.000-08:00

I just love the logo for Bystock Bedding, of a horse lying back in cosy delight reading a newspaper. This is what Tom makes at his work. In a way, Tom and I are in the same business, I write the stuff, which he then later shreds to make a comfy bed for ponies. Like chip wrappers, but better.

this girl's been amazing - LADY VIP

2009-11-22T17:39:00.000-08:00

when you are coming from nowhere with nothing and someone good is just there behind you the whole time, well that's give you cajones. Thanks Vicky. She's Djing 11 til 1 on Saturday. Thank you Lady x

can i embed tunes

2009-11-22T17:28:00.001-08:00

http://www.youtube.com/watch?v=X2hvkiuxRAE

The Papershed boys and other tales

2009-11-22T07:17:00.000-08:00

We spent two days down at Bystock last week, I've never hung round there longer than a few hours and it was great to get to know my brother's home better. It's a massive house, Victorian I think, and kind of like a very chilled, comfortable boarding school. They've got loads of chickens and three alpacas, the craft centre sometimes sell bits and pieces, and Bystock eggs have good yellow yolks. The second unit cameraman, Lee, bought his girlfriend a kitschy cat door stopper for £4.

Tom works in the paper shed - when he feels like it, he does like a loaf, as do I, it's why I work for myself - where they make animal bedding, very popular with horses, out of old newspapers.

We arrived and went to find him pulling plastic and cds out of newspaper supplements, he was busy at work and pretty proud for us to see him with his work gang, "The papershed boys" he calls them. Tom loves a good gang. Instead of going back to the house for a proper lunch, just like Ma makes, Tom prefers to make himself sandwiches and eat with the lorry drivers and manual work bosses in a drafty room off the end of the wood work shop. Tom has always preferred the company of 'normal' people.

I went and joined him over lunch - he gave Will a sandwich, but not me, but I ate his crisps to teach him a lesson he'll never forget. He forces the blokes to have one of Tom's beloved 'meetings' during their lunch hour, raising issues such as the lorry being a mess and needing a new van. He writes the minutes in his binary code style alphabet, 10001100011000. My Granny wrote like this in the days before she died. Nothing evokes the simple workings of the machine of the mind like the binary form.

Watching this I felt this all-too-familiar surge of protectiveness which I haven't felt for a while, I guess because mostly I have seen Tom around family, in private spaces, where everyone is a known and trusted commodity. It's a weird form of protectiveness because it comes in a none too comfortable guise. It goes like this: I don't want Tom to impose on people and bore them, because, not really that I care about the people, but I care about how people think about Tom, I hate the thought of people not liking or wanting him there. When things like this happen my whole head becomes eyes scanning the reactions of people in the room, I am prickly sensitive to any crabby vibrations.

However, I doubt Tom notices, even if people do feel this sometimes, which I really hope they don't, because if you breathe, calm down and open your heart, every level of human intelligence has a place in the world, and a place in your world. I was round at someone's house the other night, and admittedly I was a bit drunk, but the owner of the house really, really, didn't want me there. I was the last to know, when my mates told me, as we left. So, ignorance is bliss...

Anyway, I divert. Everyone at Bystock is lovely and I doubt the lunch box crowd are actually thinking bad things. The managers of Bystock choose all their staff, from top to bottom, on the strength of their capacity for care, patience and kindness.

Won't bang on. More later.

Mission to Lars animation

2009-11-22T05:51:00.001-08:00

Mission to Lars party - a lot of very amazing people doing very amazing shit for free

2009-11-21T05:11:00.000-08:00

Thanks to my girlfriends, Kim Machray, Elaine Foran, Tiff Darke, Stacey Duiguid. To Amy Spicer at Sculptivate for dressing the place; to Arthur Baker, Dixon Brothers, Cicada and Lady VIP for DJing, and thanks to many many more, mostly listed below

PS I wanted this post to look fly, but it looks shit because my graphic design skills are almost as legendary as my DJing skills.

AND...

lost in beauty

Bystock Court

2009-11-19T17:27:00.000-08:00

We went to spend some time with Tom for the last two days at his home, Bystock Court. I've just got back and it's been two really long days so I'm just going to throw up some pictures of Bystock and a few words from them on what they do. The visit was deeply cockle-warming, an education in many ways, and spending so much time here made me realise what a nice home this is for Tom. Even though we were working hard, we had a laugh. Tom seems to have managed to reinvent his job so that he can spend an awful lot of time making cups of tea for everyone. Clever work brother...

'Bystock Court is currently registered with CQC as a home for 41 men and women (18+ years) with learning disabilities.'

'Our aim at Bystock Court is to provide a supportive, happy and secure home for all our residents where they will be encouraged and helped to develop their self-esteem, confidence, abilities and friendships at their own pace.'

'Bystock Court is a working community and each resident, or day care client, has a job to do. They work from 9 a.m. to 5 p.m. Monday to Friday, but have time off for shopping, swimming and other outings.'

'We offer a choice of work, which at present includes, farming, gardening, newspaper recycling, woodwork,cooking, laundry and housework, and a general craft workshop. A Work Unit Manager supervises each unit.'

'The purpose of all the work units is to provide an enjoyable occupation and real work experience for our residents. Each resident is encouraged to do as much as possible for themselves and are actively encouraged to learn new skills. They take great pride in their standard of work and the high quality of the finished product, all of which leads to increased self-esteem and personal dignity.'

Our really first proper day of filming, hopefully my last day of stoopid panic

2009-11-18T14:31:00.001-08:00

I slept about 3 hours last night, woke at 4am with my mind racing and it didn't stop racing til Will turned up to start our first day of proper on the road filming. The frets that were coursing through my brain covered everything, from the fact I should stop drinking caffeine to the fear that my cough is in fact lung cancer. In between these opposite ends of the spectrum were largely worries about the film: will i go bankrupt? will it be shit? will it belittle tom and make me and will look like gigantic ARSES, are we underqualified and overconfident (in truth no problem there, many films are made be the under/over crew), worse are we underqualified and underconfident, can we make Tom work under these insane conditions, how am I going to get the money pledged turned into money in the bank; how can we possibly make the film on such a low budget, is the increasing move on line by newspapers going to mean that I am effectively out of a job by the end of the decade, will i ever get over how much of a massive spin out i had at the weekend (IN PUBLIC), what do we do if tom refuses to come at the airport, am i experiencing middle aged spread, what if i never sleep again, and how come William appears to have no respect for me. don't get me started on the bloody party: what if no one comes, what if the party costs more than our party budget, what if what if what if.
my eyes were like mashed strawberry jelly by the time i got off to sleep round 6.50am. At 7am William turned up with the camera rolling...
Basically I am really stressed out.
And then today happened, we drove down to Bystock to see Tom and to start the Mission to Lars in earnest, and as soon as I saw him, despite still in a state of sleep deprived wiggage, I knew we were doing a bloody brilliant thing. Yes, there are some complex challenges ahead, but if you just stop, breathe, think, care, be yourself, be kind, believe, all will be fine. It helped that Tom made us all, the whole crew (Will, Tom, James and Lee and me) a nice cup of tea and took us all into the ballroom at Bystock for, "A meeting."

Tom loves a meeting.

So much good stuff happened today after such a wibbly wobbly start... I don't really know where to start.

But being rather short of sleep, I'm going to keep this back for tomorrow when I'll be truly back in the happy room and out of this phase of hairy, but always essential, doubt.

Mission to Lars is launched, proper. Tom's in (although he could decide not to be at any time, but it's our job to keep him on course and feeling safe), we're all so deep in we would be beyond bereft to give up. And...more tomorrow. Got. To. Sleep.

We might not have found Lars Ulrich, but we've found Alan Hope

2009-11-17T16:42:00.000-08:00

And as well as being one of Tom's ex-heroes, he's leader of the Monster Raving Loony Party too. Along with his Cat: Cat Mandu

Oh man, more issues. And a link to something funny about Lars Ulrich

2009-11-17T16:30:00.000-08:00

I rang the woman from Sibs today, the Sibling charity. I have to say I wasn't feeling it a great deal, I've just got on with things really and she talked for England and the rest of Europe, but their were key things that I picked up in her conversation that rang very true for me when I was a kid:
Not getting any information from parents; only being told off for not treating your brother with extra special tolerance.
Not knowing it, but knowing it deep down, that your parents were quite stressed by everything
Feeling freaked out because you are teased at school, stared at in the street or worried about what people might do to your sibling
So that reduces it down to a few short lines
Personally, I'd forgotten about this, what I have never forgotten about is quite how absolutely vile and horrid I was to my brother, including, once, threatening him with a knife because I could not make him behave. Even writing this shit is giving me some really bad feelings. There is no way that a kid can cope with a kid that's fairly out of control and whose behaviour is not really understandable. If we'd known more about Tom's condition when he was young then we could have been careful around him and made sure not to do things that he seriously never would be able to cope with.

So, there's a big heap of shit here, I could write for hours but I won't because it's beginning to feel like group fuckin therapy here, and actually I am just trying to arrive at a good place to move on to the next stage of our road trip, which is essentially about doing something special for Tom.

It's good I've got this blog here to mull this shit over in my head, because without it I'd just rush in like i always did as a kid, pushing Tom into a behaving like me, the so-called 'normal' sibling

if i do that then I am just a ginormous and useless fucker.

sorry i haven't put any Tom pictures up, my scanner is anathema to my tech skills, as is getting a movie up on this blog, and making the comments boxes active. there's a gremlin in my machines.

on a lighter note, i listened to some comedian doing a whole thing on a radio station about his night out with Lars Ulrich. Listen here:http://www.youtube.com/watch?v=59xskijoM-g. Now I have partied with some mental assholes, and they've turned out to be fucking diamonds; I have partied with some other mental assholes, who turn out to be, well, just assholes. I really hope he is the former. Am sure he is...

Our home

2009-11-17T07:05:00.000-08:00

Our home for the next few weeks is this excellent Meet the Fokkers and Borat style only in America fairly giant mobile home. William chose this one because, "It's the funniest". We're sure that having our own moving home is going to be the least unsettling thing for Tom, and also the most tender thing to our ickle budgets. The extremely kindly people at Aussie owned Apollo Motorhome Holidays has given us a generous discount. The thought of staying in hotels is horrific when you are making something as low budget as Mission to Lars. I have this pre-trip agitation now, as I try to imagine what the hell this trip is going to be like. I think it's mostly going to be heavy metal, diners and driving...

Spreading the Love

2009-11-17T03:05:00.000-08:00

Every day or so someone says or sends something to me, which makes me realise our Mission to Lars has ramifications beyond just getting Tom, Will and me pursuing a crazy plan. There are things about having a disabled sibling that many people feel, but rarely get to express in public, as if it were herpes or something - which it isn't, obv. Anyway, I got this email from the writer Clover Stroud this morning, who I've never met, and it deserves a bit of blogoxygen, no question. Thanks Clover. x

Hi Kate

Tiff sent me an invite to your party on the 28^th which I will definitely come to and I clicked through to the link on your blog about mission to Lars. I just wanted to say that I think what you are doing is totally brilliant. I have an older sister who is disabled after she was deprived of oxygen at birth. She is totally vulnerable and manic depressive, but also quite close to normality, but then a million million miles away from it, all at the same time. She lives with three other disabled women and their carers. I read yr blog about the guilt, and worse, the shocking, shit-feeling ease with which we can sort of ignore a disabled sibling, and it rung very true. And I read yr piece in Style a couple of weeks ago and thought it was brilliant that you and Tiff had the balls to be public and open about it and supportive of disability. Terrible to say it, but balls IS what it takes I think - lets face it, magazine style journalism isn’t usually interested in anything so unglamorous, unstylish as brain damage. God knows, disability is sad. I feel sad and guilty about my sister all the time, and the endless questions about what her life might have been like are always there, painful and impossible to answer because the truth is so fucking sad. Her tragedy is that she knows she is disabled too. Imagine what that must be like: KNOWING you are mentally handicapped and that you will never do all the stuff like jobs, driving licence, own home, kids, the endless parties and fun of life, that its easy to take for granted. I feel I have had such a massive go at life, which has often ended in fuck up, but which has been an amazing ride too (and continues to be of course, so very very much to do still....) and my sister has not, and never will do.

Maybe I’m beginning to sound clichéd, I just wanted to say good on you, respect for yr mission: Space Control sending much luck to Major Tom.

Cloverxx

should we go for the mother and father of all RVs

2009-11-16T13:27:00.001-08:00

I took my time to search out the blingiest rv in our price range and I think I've found it; it's nicer than the one I spent far too much of Glastonbury in earlier this summer, and its got smoky windows, which probably isn't ideal for filming but its great for appearing to be a the A Team. I guess Tom gets the bedroom, and me and Will sleep in the sink. James and Lee are getting a poky little second unit Winnebago. This is a funny piece of vehicle, basically like a coach that you go on a school trip in.

grrrr, why can't i embed my little mission to lars movie clip

2009-11-16T13:20:00.000-08:00

first day's filming

2009-11-16T12:34:00.000-08:00

Well, as I remember all other experiences of filming, the first day is never too tasty, and this first day was no exception. We went to meet Lynn Zwink who is the head of the Fragile X Society, she filled me with information til my head swam, not really helped by a bit of a weekendover; and her F-X son, Andrew pottered round the house in a very familiar F-X sort of way. Will and I were talking on the way back and we realised we had never met another F-X person. Tom is the only one we know. Andrew was kind of funny in the way that Tom is, but he was much much more hyper. Since Tom found an appetite for pies, cheese and wagon wheels he's become a lot more sedate. Andrew was a major Queen fan, and he treated us to a Freddie Mercury style show. Tom used to love Freddie Mercury too. Though there is no way Tom would ever have given us a show quite like Andrew's, complete with microphone stand strut and singlet. Very good.

I've got to do some work now, I've got 36 hours to clear my desk before we go off to do our thing with Tom, we need to get our shit a little tighter, and we know it.

First day's filming is always awkward and weird and no one really finds their feet til they get deeper into the story.

Gotta work. Please come to the Mission to Lars launch. I'll be lonely if you don't x

28 November

2009-11-13T03:26:00.000-08:00

http://www.youtube.com/watch?v=gj1aPCZiStA

For tickets contact Mencap, kate.tintner@mencap.org.uk or call 020 7696 5547

Thanks to (with more to come)

Arthur Baker, Dixon Brothers and Cicada
Lost in Beauty, Johnny BlueEyes, Adrian Forster of ETA, Julien and Mehdi at Westbourne Studios

Alex James' cheese, Godiva chocolates, Marks and Spencers fruit and crackers, Rubens apples

Appletons rum
42 Below vodka
Hendricks gin
Monkey Shoulder bourbon
Sol beers

Journeys End wines

Croft pink port

Taylors Late Bottled port

28th November 2009, 10.30 til 4

2009-11-12T16:02:00.000-08:00

Disco with a purpose. Half of all money will go to Mencap, half to the film project. See you there. I'll be on outfit change number two possibly three and god knows what else. Email me or Mencap for details: kate@katespicer.com Kate.Tintner@mencap.org.uk

Guilt

2009-11-12T11:08:00.000-08:00

I pulled this off a charity called Sib's website. It's a bit simplistic, and I think it absolves the guilt all too easily. But, it's the first time I have ever touched upon sharing feelings of guilt about Tom beyond brief, very brief, conversations with my brother Will. Our family just didn't talk about all this stuff, it was just about Tom is This, get on with it. Weirdly, I feel guilty just writing this, I feel guilty about feeling guilty about Tom. Christ the human mind is inefficient sometimes....

Dealing with guilt

Guilt is self-reproach for supposed inadequacy or wrongdoing; another definition is self directed anger or blame. For many adult siblings, guilt eats into their ability to enjoy themselves and get on with their lives. The type of quilt experienced by siblings is usually in relation to something they feel they ought to do or feel about their brother or sister. It is absolutely normal for siblings of disabled people to have feelings of guilt.

Some of the things siblings feel guilty about:

Not having the disability or illness when their brother or sister has (survivor’s guilt)
That they can do things in life that their brother or sister will never be able to do
That they have had uncaring thoughts about their brother or sister
That they haven’t visited, or spent time with their brother or sister as much as they feel they should
That they wish they didn’t have a disabled brother or sister
That they have felt jealous of the amount of time a parent has spent with a brother or sister
That they have resented the impact of their brother or sisters disability on their lives

Acknowledge the feeling for what it is

Take action

The feeling of guilt may be telling you that there is something you need to take some action on. The type of action you take will depend on the circumstances. For example, you may feel better if you simply make a decision to visit your sister twice times a month, rather than feeling that you should go every week but don’t actually do it. Put the dates in your diary.

Is there something you have been putting off and just need to go and do it?

'I have been intending to find a befriender for my brother for the last year and I’ve done nothing about it except feel guilty that he has no friends. I will spend 30 minutes on the internet on Wednesday night getting contact numbers for local services.'

Reframe how you view things

How can you think about this experience in a positive way?

'I used to feel guilty about being able to go skiing. Now I go and enjoy it and know that when I come back I will feel refreshed and energized and that my good mood will be good for people who are around me, including my disabled sister.Taking time to do things I enjoy will be better for everyone.'

'My brother would hate this; he wouldn’t like all the people and the noise. It’s a very good thing that he’s not here.'

Forgive yourself for things that are in the past and accept those things that simply can’t be changed. Just let go of things that you really don’t have any ability to change.

'I used to pretend that I didn’t have a brother and never mentioned him at school. I felt bad about this for years. That’s what I needed to do as a child. I don’t need to do it anymore. I don’t need to feel guilty about this. It’s just a way for a child to cope.'

red tape

2009-11-12T07:43:00.000-08:00

So, being upright media folk, instead of the sort of people who enter the US illegally and work as journalists on a tourist visa, we went to the embassy to get ivisas, the visa that means you can work on media related stuff out there. We were turned down, apparently, because Tom is disabled then we will be driving the story, and not him, therefore what we are doing is entertainment and not news. To get an entertainment visa we need to have a lawyer in the US, which would probably gobble up half our budget and/or the backing of an American production company or news organisation.

We now have turned down for visa against our names on American immigration system, and potentially our small, entirely altruistic, awareness raising documentary is consigned to the dustbin.

No wonder people enter all nations illegally. Unless you bothered to consult a lawyer specialising in visas, which I assume most small filmmakers and immigrants of many kinds don't and can't, the red tape will snatch you.

Perhaps we should smuggle in across the border from Canada in a car. This level of subterfuge is not really ideal given the already significant challenges of traveling with Tom.

What a fuck up. If only we had broken the law, like everyone else seems to.

major :-(

makes lack of cash quite cheery and unproblematic in comparison

We need more money. Bummer

2009-11-11T16:02:00.000-08:00

We're still £10,000 short of a cool budget to shoot our film. Anyone with any ideas, email me on katespicer@btinternet.com. Another BUM thing is that I don't know how to activate the comments boxes on my blog.

Bummer, indeed.

Me, me, me, and the Mission to Lars

2009-11-11T15:52:00.000-08:00

Here's a really vain photograph of me Djing (definitely really badly, more playing records in public really) at the kiddy festival, Camp Bestival, last year. I found this randomly and my first thought, given how much I am concentrating on Tom and his relation to my world, and the world in general, my first thought was, Jeez, I have had a big ol' go at the Buffet of Life, I definitely took The Big Plate. I have gone back, again and again, for more. I am a fat fucker with life.

My Dad gave me some amazing photos of Tom this weekend but I can't make my scanner work, so I've gone for my default setting: ME.

What hit me about Tom this weekend was how much he enjoyed being included in, and an important part of, normal life. I know I said this before, and it shames me every time I go there, but it's been too easy not to think about Tom while I've been slurping up all the good times. And when he was here at the weekend all I could think was I love you so much, I want to protect you so much, I feel guilty, and finally, I know he'll step up to the plate with his Metallica challenge.

I spoke to a woman from the Fragile X Society tonight and she said that she thought we'd have massive problems getting Tom to face his ultimate dream, to meet Lars.

But I honestly, perhaps stupidly, believe that Tom can break through his autism and his communication barriers and his fears, and just fucking fight through all the challenges that stand between him and meeting Lars.

We're going to take it baby steps, take Tom up through a ladder of his heroes, from Uncle Pete to Lars, and when he finally gets there he'll have a new confidence that has nothing to do with diagnoses and medically imposed restrictions, he will have been on a big heavy journey, in the strictest tradition of the roadtrip genre, and he will arrive at the destination a better, bigger lived, man. And we, me and Will, as his family, will have grown to know him better.

It will happen, and it will be good, and it will be important, in its own small way. All of us have big things to face here, not just Tom, but me and William too. When the TV channels rejected us one of the reasons was that we were not emotional enough.

How anyone can suppose this won't be emotional. Jeeez

Five gins in, so possibly this is a crap post.

But it's all real, for me.

Tom is nuts for taking photos.

2009-11-09T14:35:00.000-08:00

He mostly wears blue jeans and black fleeces and something like walking boots, though I have seen him in cowboy boots, biker boots and in sandals.

When he was with me at the weekend I noticed how incredibly sensitive I am to people staring, laughing or rolling their eyeballs. I am many bad things but one thing I am not is argumentative (except with boyfriends and Natesh Pothalingam) and I am never violent, ever.

I feel such an uncontrollable protective anger rise up when I see people have bad reactions to Tom, it's like I am waiting and if it goes beyond a certain level I will rise up like a cobra and shock them so bad their eyeballs will shoot out of their assholes like marbles.

Motherfuckers.

I don't know how to express how much I loathe the sort of morons who cruelly laugh at or victimise my brother and others like him.

Tom can definitely be very funny, and I should probably be less protective in this way. Because you can laugh at people without it being too hurtful or mean. I am sure that when I am on telly people laugh at me in a totally unpleasant way and hey, who gives a shit.

But meaness and cruelty to someone weaker than yourself; always always bad. Practised only by bullies and buttmunching asswipe losers. Etc

And on that eloquent note. Goodnight.

Ben

2009-11-09T11:08:00.000-08:00

The only Spicer sibling not on this blog yet is Ben. Ben is the youngest. He's so superstylish I have to ring him to ask what to wear sometimes. In his day job he keeps important people looking special. Not sure I am allowed to say much more about all that, it's probably Top Secret. (He'll get me to take this down, and I probably will because he is so scarily together, not like a little brother at all).

Ben's boyfriend is called Scott, he is one of the softest, sweetest, kindest people you'll ever meet, he doesn't have the viper sting of a Spicer. He's been amazing with Tom from day one, the true test of whether a Spicer's latest other half is worthy of joining our ridiculous oversized family.

I remember him and Tom DJing one Christmas. I wish beyond everything I had some video of Tom's mixing and scratching. Let's just call it avant garde - and definitely better than mine.

To piss him off I've put up a picture of him looking poop splattered at Bestival.

Murder me later dude...

x

Mum

2009-11-09T10:44:00.000-08:00

This is a triple thumbs up from Mum, Tom and me at my sister Amy's wedding last year. (Note how feeble Mum's thumbs up is, ladies of her type are not big ones for the trucker's favourite emblem of Happy)
At Amy's wedding, Tom made two speeches, one official and one unofficial. Always rounded off with plentiful "Cheers" action. Don't know what it is about Tom but he always manages to get the big thumb out of me, think it's something to do with his love of the Monster Raving Loony party, his preferred political party, even though he isn't qualified to vote by law.
My Mum's had a struggle with Tom, in some ways we all have. But Mums give so much of their soul and their abundant capacity to love and worry to parenting, and when Tom was born there was still a great tradition of mothers feeling guilty if they had a not normal kid. There's a lot of heavy emotional politics in this issue, that I don't think I am necessarily fit to mull, suffice to say it hasn't always been easy for my Mum, or my Dad and stepmum for that matter. My Mum has always been incredibly patient with Tom in a way none of us have.
But to talk like this negates what Tom has been through in his life, which, in some ways, none of us will ever know. Despite having poor speech and a low learning age, I know he has some insight into his 'difference'. He once grumbled that he didn't like any of his fellows at school because they were all 'mental' and I know that as his five siblings have raced through life, especially his brothers, he has felt the fact that he hasn't followed them. This is almost to painful to think about for my brother Will, we discuss it occasionally, I know that.
I recently interviewed some learning disabled people for a story in Sunday Times Style, all three, who were of a much higher learning level than Tom, knew they were learning disabled, and some of them were quite political about fighting for their human rights. http://women.timesonline.co.uk/tol/life_and_style/women/fashion/article6892120.ece
In an age when the immigration debate, women's rights and the right wing shame of the BNP fill us with angry, liberal despair, the learning disabled are the forgotten many.
Perhaps we should all vote Monster Raving Loony. Their manifesto includes a parliament on wheels, which would sort out devolution alright...

Tom's visit :-)

2009-11-09T01:50:00.000-08:00

So Tom arrived on Saturday afternoon and is just eating some breakfast before he goes back to Bystock Court, his home, today. It's the first time Tom's been up to stay with me in over a decade. I asked him a fair bit but he always said, "I'm busy that day" before I'd even suggested dates.

It was a very busy weekend, culminating in a dinner with a lady who has raised a fair chunk of our backing so far; she is a rather international and glamorous type and, Tom, Mum, she and I went for a curry in Battersea last night. Tom was an absolute charmer, in as much as he was so happy, enthusiastic and pleased to be having this grown up dinner about important things, and to be included in it.

As we talked, including Tom as often as possible, instead of doing what is sometimes very easy, and just babbling on at our own pace, I watched Tom contribute and engage in a way that only happens if you give him the time of day. He will never interject or monopolise the conversation like I can, will, constantly do.

Earlier in the day him and I had left my nephew's birthday party in order to look after our tiny little grizzly niece. Tom is so sweet and gentle with her, I'd plonk her down on his lap and come back to find him dangling keys or stroking her arm. Sometimes we leave Tom out of the 'grown up' things like childcare and decision making. This trip is about concertedly NOT doing that any more; it's about a trip among equals, an adventure that is inclusive of everyone's needs. I know that we will find that if we let go and let this happen great new opportunities and understanding and love will unfold.

Dad bought a bunch of fantastic photos to London with him, which I will scan in a post up later today.

Sheffield Documentary Festival - postscript

2009-11-07T09:53:00.000-08:00

Ha, ha, ha, ha, ha. Will and I were absolute newbies at the whole festival thing, we fluffed one pitch quite badly, well, I did with my scattershot enthusiasm; and spent a lot of time feeling like the new kids at school surrounded by knowing sixth formers. We didn't get too bothered about it long term because God you learn from mistakes much faster than getting it right and as long as we come back with decent rushes we can talk to people about funding and backing then. Will and I talked non-stop (when we weren't discussing what a pair of clueless goons we were) about the project. What I love about these massively confidence crises is that we always come out the other side with a stronger vision and a stronger sense of commitment and resolve.

Ha, ha, ha, ha. I used my sense of inexperience as a means of communication with other delegates. And after the daylight hours of feeling like dorks we loosened up with some booze and met some totally incredible inspiring interesting people and fitted right in fine enough. We knew a few people there and some important people were nice to us; some important people ignored us like a poo-ey smell, but hey ho, that's the important person's prerogative. You just gotta be able to ha ha ha ha ha at yourself when you aren't that important, ha ha ha ha, and crack on with it.

It was a useful positive move in the right direction heading up there, and the time Will and I had to think and brainstorm was fabulous.

It's so great to have Tom here for the weekend, he hasn't stayed at my place for over a decade and it's just blissful to have his gentle presence here in my home.

may i recommend the following from the Sheffield programme: american: the bill hicks story, winnebago man, 21 below, i'm dangerous with love...

Sheffield Documentary Festival

2009-11-05T23:55:00.000-08:00

http://sheffdocfest.com/
Heading up here today to talk to various potential film funds. Need to have all my science and creative faculties about me, but partly because of spending so much time on this project I have been fucking up on my journalism. Woke up this morning feeling like I might screw everything up: my existing journalism work, the film, the money, the everything.

I just have to hope the walk to the station to get up to Sheffield will lift my spirits because I'm feeling flat as a pancake today.

Old family photos

2009-11-05T10:43:00.000-08:00

Tom's the one in old skool NHS spex. As you can see we were a very stylish family. We were so style free that the major 70s trends like flares and lurid colours in polyester never hit our radars. The little girl kissing Will in the top picture is our cousin Maya, who we are meeting in Vegas for our first stop off in the US. The lady on the scooter is my Granny's cleaning lady, Frances. He's known her all his life. When my Granny died two weeks ago, Frances was still doing some cleaning for her on and off. Frances is 92. Tom loves Frances. He liked her mate Brian even more, Brian was an early Tom idol. Brian worked on a dairy farm. Tom would walk down and help him clean the yard and so on. Tom was obsessed by bulls at this time and we'd often find him sitting in a field containing a large and extremely fierce one. Luckily no harm ever came to him. Brian used to pitch up at my Granny's house on a tractor pulling a trailer full of logs. Logs, there's another thing Tom likes, and chainsaws. Mind you, who doesn't like logs, chainsaws, axes? Ah, those were happy days in my memory. But at the time I suspect I was an absolute brute to my poor brother. I can hear me now, "Oh Tom" or "Tom, don't" or just a long drawn out exhasperated, "Tom." I feel a bit bad now.

Uncle Tom Tom

2009-11-05T04:31:00.000-08:00

Mission to Lars party

2009-11-03T11:56:00.000-08:00

So the 28th is booked, 10.30 til 4am, Westbourne Studios in W11. We've got a tent full of (the right sort of) House music all night long. My committee of totally fabulous girls are Tiffanie Darke, Stacey Duguid, Kim Machray, Elaine Foran and bringing up the rear, me. Our aim is to make 400 people happy and raise a bunch of cash for Mencap. I'll post an e-vite later this week, with a link to ticket sales. The people who do the ETA parties are helping us, if you know them, you'll know they do it proper style. x

Fragile X treatment in early clinical trials

2009-11-03T11:05:00.000-08:00

Clinical Tests Begin On Medication To Correct Fragile X Defect
ScienceDaily (Nov. 4, 2009) — NIH-supported scientists at Seaside Therapeutics in Cambridge, Mass., are beginning a clinical trial of a potential medication designed to correct a central neurochemical defect underlying Fragile X syndrome, the most common inherited cause of intellectual disability. There has to date been no medication that could alter the disorder's neurologic abnormalities. The study will evaluate safety, tolerability, and optimal dosage in healthy volunteers.
The work is the outcome of basic research that traced how an error in the fragile X mental retardation gene (FMR1) leads to changes in brain connections, called synapses. The changes in turn appear to be the mechanism for learning deficits in Fragile X syndrome. The new trial tests Seaside Therapeutics' novel compound, STX107, that selectively and potently targets the synaptic defect.
Thomas R. Insel, M.D., director of the National Institute of Mental Health, said, "This project is the culmination of years of fundamental research, first identifying the genetic mutation and later deciphering the biochemical consequences of this mutation. Now, with the initiation of this first clinical study, we move one step closer to understanding how this novel candidate may play a critical role in improving the lives of individuals with Fragile X Syndrome."
Randall Carpenter, M.D., president and chief executive officer of Seaside Therapeutics, and Mark Bear, Ph.D., Seaside's scientific founder, are leading the research. Dr. Bear is a Howard Hughes Medical Institute investigator and a professor of neuroscience at the Massachusetts Institute of Technology, Cambridge, Mass.
The National Institute of Mental Health, the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), and the National Institute of Neurological Disorders and Stroke (NINDS) have provided grant support. Private foundations providing funding include the advocacy groups Autism Speaks and FRAXA Research Foundation.
Fragile X syndrome is the most common inherited cause of intellectual disability, affecting an estimated 1 in 4,000 males and 1 in 6,000 females. The syndrome causes a range of developmental problems, including learning disabilities and cognitive impairment. People with Fragile X syndrome may have anxiety and attention deficit hyperactivity disorder. About one-third of males with Fragile X syndrome also have autism or autistic-like behavior that affects communication and social interaction. Usually, males, who have only a single X chromosome, are more severely affected than females.
People with Fragile X have DNA mutations in the FMR1 gene that, in effect, turn off the gene. Research in recent years by Dr. Bear and colleagues has identified the molecular consequences of this silencing of FMR1. Normally, the protein product of the FMR1 gene acts to dampen the synthesis of proteins at synapses that are stimulated via a specific class of receptors on brain cells--metabotropic glutamate receptors (mGluRs). Without the brake provided by FMR protein, synaptic protein synthesis is excessive and connections do not develop normally.
This basic research provided the basis on which to develop medications that could correct the defect.
The current study will focus on a compound, designated STX107, that selectively inhibits one type of mGluR receptor, mGluR5. Evidence in mice with Fragile X-like symptoms suggests that reducing levels of mGluR5 can restore normal synaptic protein synthesis and improve function.
The initial phase 1 study of STX107 will involve healthy volunteers. If results suggest that the medication is safe and tolerable, the study will progress to a phase 2 test of dosage and efficacy in adults with Fragile X syndrome. If STX107 shows promise in adults, the compound will be assessed for pediatric safety (with funding from the Best Pharmaceuticals for Children Act [http://bpca.nichd.nih.gov/about/index.cfm] through NICHD) prior to initiating clinical trials in children.

Anyone know this man?

2009-11-03T08:48:00.000-08:00

This is Alan Hope. Big Al. We are trying to track him down for the film. He's the chairman of the monster raving loony party I believe. He was Tom's hero before Lars Ulrich entered the fray and I think a visit to him is in order.

Further information on Fragile X from a company looking for something like a cure

2009-11-03T05:00:00.000-08:00




About Fragile X Syndrome

Fragile X Syndrome is the most common inherited form of mental impairment and
the most common known cause of autism. Fragile X Syndrome is caused by a
mutation of a single gene, the Fragile X mental retardation 1 (FMR1) gene, on
the X chromosome. The FMR1 gene produces a protein needed for normal brain
development. Individuals with Fragile X Syndrome lack this protein and, as a
result, exhibit a number of behavioral and physical symptoms including mental
and developmental impairment to varying degrees, attention deficit and
hyperactivity, autistic behaviors, anxiety, large physical attributes,
particularly of the face, and seizures. Fragile X Syndrome typically impacts
boys more severely than girls, with 20% of boys also receiving a diagnosis of
autism. There is no cure for Fragile X Syndrome at this time. A variety of
medications and behavioral interventions are used in an attempt to address
individual symptoms of the disease. Drugs currently used primarily focus on
treating specific symptoms such as anxiety, or improving and controlling
behavior. 

About Seaside Therapeutics

Seaside Therapeutics is creating new drug treatments to correct or improve the
course of Fragile X Syndrome, autism and other disorders of brain development.
We are dedicated to translating breakthrough discoveries in neurobiology into
therapeutics that improve the lives of patients and their families. For more
information visit www.seasidetherapeutics.com.

Our cowgirl cousin, Maya

2009-11-03T00:44:00.000-08:00

Until 1975 Tom and I were the only grandchildren: me first, Tom, two years after and then four years of being the only next generation of my Mum's family. Then cousin Maya arrived. We are the senior grandchildren and very important with it.

Our massively loved and very important, fiercely matriarchal, stylish, wise and witty Granny died a couple of weeks ago. We belted out some cracking hymns at her funeral and felt a funny mixture of sadness and loss yet happy we've got this big jumbly diverse family thanks to her. We're not like the Waltons, and we don't hug each other a lot - don't get me wrong, I'm not trying to make you gag. No one ever says I love you, ever. But we sat in the church and felt a sense of happy unity and identity. The sardonic and dry family humour was fully in effect.

Cousin Maya was not there, in body anyway. She was going to fly over but the generation above us heard Granny saying, sternly, "Don't you dare, what a waste of money."

Maya lives in California and works with Monty Roberts, the Horse Whisperer. Maya is a legend within the family for all this. I try not to brag.

But she is flying up to Vegas for the first stop on our Metallica roadtrip, there's the national rodeo championships the same weekend they're playing. As a family Fragile X is something we all have to deal with and she said she wanted to come, to support us, and to help us get the F-X message across, Cowboy Styleeee.

Tom is a big big fan of the stetson and cowboy boot. Going to a rodeo will be extremely testing for Tom, but we may tempt him with a new pair of cowboys boots and a massive ten gallon hat.

Then again we may not. Tom does what he wants, which is why this trip is one big exercise in jeopardy and chaos.

Whatever happens, it will be great to share some F-X thoughts with Maya and have an awkward family hug. Awkward British hugs are just as good as big American 'I love you man' ones.

The search is on for an RV

2009-11-02T11:10:00.000-08:00

https://www.elmonterv.com/blog/montyblog.html

We need an RV, a big American mobile home to fit the whole crew in, with a cheap hire car trailing to capture my terrible driving. I've been emailing marketing directors, pleading genuine poverty while trying to convince people we are worth a bit of altruistic sponsorship. We'll probably take a tent too. If any of the boys start farting I'm sleeping with the bears.

Tom's favourite Lars photo

2009-11-02T10:12:00.000-08:00

Tom spent some time going through the Google image results for Lars and has come up with this as his favourite Lars Ulrich photo. Funnily enough, when Tom freestyles on the dancefloor he likes to throw up some of those devil horns too. He was on good form, and largely seems excited about our trip. Though with Tom there is always room for great unpredictability. Like a rock star, he tends to do largely what he wants...

Iris flags up an auspicious date, 28.11.09

2009-11-02T10:09:00.000-08:00

We are having a big party to launch our Mission to Lars, giving the money to Mencap and thanking all our friends, and hopefully loads of their friends too, for all their enthusiasm and support. To be sorting out the film, doing my normal work and organising a party for 400 is not what I would call a relaxing calling. I was in a bit of a rabbity flap at the weekend and my Aunt Iris, who is an astrologer - a proper one - did a chart for the party and launch of M2L and now we have a date when the stars are on our side.

She gave me a very very complicated chart and a neat summary:

"It will be a spirited, flamboyant, creative evening, full of energy (and fighting spirit for a film about Tom). There is development for the invitees, conversation will flow too. There will be much social enjoyment and personal contacts will flourish [this could mean several things, some of them rude]. This will be a very relaxing and fun evening with a sense of social justice."

She's signed it Iris Horsey, Tom's Aunt-in-law.

PS. Any astrologers out there can click on the chart if they want to see it bigger. All astrological predictions welcome...

Big things to think about

2009-10-30T18:31:00.000-07:00

Tom in a limo at my Dad's retirement rave up. Probably one of my favourite pictures of him ever.

Dad's pretty new to the internet, he's spent most of his adult life operating on very sick kiddies, and now he's retired and he's tinkering with facebook and email, and, ah, bless. Anyway, he tried to put something in a comment box and it didn't work. God knows why not. The over sixties can struggle with technology even though they can decline Latin verbs, or whatever it is you do with Latin verbs.

Anyway, this is what he wanted to say.

"In many ways Tom is a better person than a lot of "normal" people in terms of empathy, sympathy and altruism.
Some years ago (and I must emphasise that his current care environment is excellent) Tom was the victim of malicious acts by persons supposed to have care of him, was referred by them to doctors and ended up on sedative medication because of his supposed aggression. It was eventually revealed that he was being abused and his aggression was frustration that nobody was listening to his point of view. After the evil carers were ousted he came off the medication and exhibited no further aggressive behaviour.
Tom's natural behaviour is caring and generous and he relishes spreading happiness to those around him"

Will's thoughts about Tom

2009-10-30T05:08:00.000-07:00

I won't inflict on my brother, Will, the tendency I have to splurge personal information in an incontinent style, he has rather more dignity than I do. But he did put two quotes about Tom at the end of a treatment, which I reproduce here. Will has the keys to this blog, so if he wants to hack in and offer his point of view, then am sure he will:

"Tom is my big brother, and I am his little brother. I am married with children, run my own business and am fast becoming a boring middle aged man. Tom is still young at heart and manages to retain the passion and obsession for his heroes that I left behind with my youth. He is lucky in some ways."

"I recently went through a very challenging period when I decided to start my own family and had to suddenly confront the possibilities that I might have children with Fragile X - to be honest it was a very frightening sense of what could happen and how it would affect my new family's life - these feelings are complicated by an absolute love and respect for my big brother Tom." Will Spicer - Tom's little brother

Brotherly Love

2009-10-29T19:37:00.000-07:00

I was going to go to bed. But I got in and my Mum had sent me this picture of Tom and my brother Will, who is shooting the film. And I really don't think family pictures get much better than this. Had the most brilliant night, surrounded by loads of BBC bods trying to help me get the film on telly, but I was just thinking, nah, let's just make it, let's not have any more commissioning editors going, "Are they experienced enough, will she cry enough." We're making a small, sweet film and I do not need anyone else to ask me heavy questions about my relationship with Tom, I think all that will certainly come out in the wash of this film. This blog is already making me think, imagine what making a film will do. Christ, I'm three martinis to the wind and still I'm thinking about our little crazy plan that just might work. Sometimes you just have to crack on. No more meetings, please...

2009-10-29T07:18:00.001-07:00