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
x
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