Monday, 7 December 2009

getting tom closer

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

1 comment:

Lucy said...


just been reading your latest blog post...

I recently worked with a great autistic kid who loves Oasis.(Obsessively but in a good way..) He got himself a guitar, taught himself to play... in the space of a year he went from crap to playing Little Wing.... my friend got him all sorts of backstage bits and bobs which R loved... but when it came to actually going to a gig... he'd decline... too loud, he'd say. It is a strange beast when you have someone so passionately into music and yet at the same time not able to access it except in an isolated, bedroomy sort of way... I totally understand your frustrations. you gotta keep pluggin away, I don't know your brother but I can spot similarities with mine.... if he's feeling safe with you guys he may venture out of his comfort zone....??? good luck!

PS I also have a friend in New York who is a film maker/ editor so I may be able to pull in favours there too if you're still in need? You must have loads of connections though and I don't want to seem like a crazy stalker... as I said... your mission has just touched a chord with me x

so.... good luck and it's great reading your blog...keep on trucking!!