Eighteen

At 7.37 am on the morning of November 23rd 1998 our eldest Isaac forced his way into the world, two weeks early. Today he turns eighteen. Some of you know his background. He was born with an incredibly rare genetic disease, Hurler’s Disease (MPS1), which saw him taken off to intensive care immediately and he didn’t come out for a week. Hurler’s disease is caused by a missing enzyme which leads to all kind of difficulties- deafness, learning difficulties, physical disabilities and gradual loss of functions to an early death. There is no cure. Aged eighteen months he went through two bone marrow transplants that have put some of the missing enzyme into his body, a treatment that has given him the life he has now. He’s had numerous operations for skeletal problems. One unforeseen consequence of the bone marrow transplant was that the chemotherapy used to enable his body to accept the donor material also destroyed his immune system which then failed to grow back. Aged ten with a weak immune system he got flu which turned into meningitis, which floored him. Back into intensive care and not expected to survive the night. Coma and eventual recovery but with his hearing completely wiped out. It’s been a long road.

But that’s only some of the story. He is in good health currently, goes to special needs 6th form college, has trips out with friends, knows more people than I do and is having a party on Saturday where we are expecting roughly 150 guests to show up. We are transitioning into adult services from children’s, both hospitals and social care, which for us daunting. He just gets on with it. The remarkable thing isn’t his continued determination to carry on against the odds or his resilience in the face of disability (though they are pretty remarkable). The remarkable thing is the connections he makes with people, the impact he has on them and the joy he gets from them.

Eighteen years ago I was totally unprepared for this- having a child is change enough. Having a disabled child is another world. Looking back now I’m not sure how we coped with some of the things he and we went through. But here we are. One of the things he wants the most on becoming an adult is to have a pint poured for him (which he won’t drink but it’ll be poured and sat with). So if you’re raising a glass of anything tonight, have one with us.

When I drove Mrs Swiss to hospital eighteen years ago the last song that played on the car stereo cassette player was this, Cinnamon Girl- still I think my favourite Neil Young song (which I don’t have on the hard drive right now).

‘A dreamer of pictures
I run in the night
You see us together
Chasing the moonlight
My cinnamon girl’

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Like An Inca

From the late 90s through to the mid 2000s I listened to a lot of Neil Young. I’d got Harvest and After The Goldrush around 1987/88 and then went through most of his albums a few years later. I still love some of them but don’t play him that often anymore. Trans, from 1982, is one of his more bizarre records (from a man who it is fair to say, had a bad 80s). Trans was mainly recorded using synthesizers and keyboards and most of the album uses a vocoder on the vocals too. Young was exploring electronic music at the time, especially Kraftwerk. The thing is, many of the songs sound like guitar songs but played on synths- rather than songs written specifically on and for synths. Young later said he was putting into place a therapy programme with his son Ben (born with cerebral palsy and unable to speak). The vocoder was an attempt to find a new way to communicate with him. Apparently Crazy Horse had recorded some of the album using their usual guitar, bass and drums and turned up for a session to find Neil had stripped all their parts off and replaced them with the new electronic sounds. Crazy Horse scratched their long haired heads. Critics and fans couldn’t get their heads around it and neither could Geffen who later sued him for making work that was ‘deliberately uncommercial and unrepresentative work’. This isn’t my favourite Neil Young song, it isn’t even in my top 50 Neil Young songs, but it’ probably the best off Trans.

Like An Inca

Yes, Like A Hurricane is a million times better and should be here instead- I saw him and Crazy Horse do it at Sheffield Arena and the amps may still be feeding back for all I know- but I thought it was a tad too predictable to post.

Numbers Add Up To Nothing

Cowboy Junkies Trinity Sessions album was one of those records that came out of nowhere and obsessed people for a while. A friend of mine and myself listened to little else for what seemed like ages. The follow up, The Caution Horses, wasn’t too bad either but it missed the church that the previous album was recorded in. This accordion led version of Neil Young’s Powderfinger is good in all the right places.

In 2004/5ish my brother-in-law’s band (then called Bocca) played above a bar in Leicester (The Lamplighters I think). Long after the evening and gig had finished three of the band and myself were standing at the bar talking and we decided, seeing as the gear was still set up, to play an impromptu version of Powderfinger there and then to an audience of the barman and three bikers who’d surely ended up in the wrong bar. Emboldened by alcohol and a very small and indifferent audience we staggered/swaggered through it. I managed to remember most of the words. At the end the barman told us that was it, he was closing. As we walked past the bikers one of them said ‘That was shit lads. Enjoyed it though’.

Powderfinger

Cool And Deadly

I heard this while in London this week and it sounded as good as the day I first heard it twenty one years ago. If not better. In my mind St Etienne are one of the sounds of London. Here, with original vocalist Moira Lambert (above, the only picture I could find of her), they get remixed by Bagging Area patron Andrew Weatherall. Dub splendour. Cool and deadly.

Only Love Can Break Your Heart (Dub Mix In Two Halves by Andrew Weatherall)

Thirteen Today


Our son Isaac is thirteen today. He was born at 7.37 am on November the 23rd 1998, changing our lives forever. Isaac spent the first two weeks of life in an incubator with unspecified breathing difficulties. At eight months, already wearing two hearing aids and having had several minor operations, he was rushed to Manchester Childrens’ Hospital with hydrocephalus, had his head punctured and drained and a shunt fitted. A few days later he was diagnosed with Hurlers’ Disease (MPS 1), a degenerative condition leading to death by the age of ten. The only partial treatment available was bone marrow transplant, which at that point had a fifty per cent success rate and a twenty per cent mortality rate. BMT has made major advances since then, in both success and mortality. Two bone marrow transplants followed in 2000, the second one successfully restoring the missing enzyme but leaving him with a host of issues and needs, and frequent hospitalisation. Since then he has had major spinal surgery, knee surgery, shunt removal and replacement, continuing bi-weekly infusions to replace his still absent immune system and a cochlear implant. In 2008 he contracted pneumonia, then meningitis (causing him to have a mini-stroke), which very nearly did for him. So turning teenage is a big deal for us and him not least because there have been times when he wasn’t expected to survive the night, never mind reach teenage years.

Today he is a walking, talking, somewhat hyperactive, short statured bundle of energy who brings joy to those who meet him, and Isaac meets many people. He just approaches them and starts asking them questions. He is currently full of teenage hormones- his main interests are breasts, Manchester United, breasts, crisps (prawn cocktail flavour), Lego, breasts, ladies wearing make up and high heels, chips, chocolate and breasts. Not so different from the rest of us maybe, although he says exactly what he thinks whereas the rest of us can internalise some of our thoughts about these topics.
Happy 13th birthday sunshine. May you continue to beat the odds.
This was the last song the compilation tape played in my old dark green Ford Escort on the way to hospital just before he was born, sometime in the early hours of the morning thirteen years ago.
‘A dreamer of pictures
I run in the night
You see us together
Chasing the moonlight
My cinnamon girl’
Still, I think, Neil Young’s best song.

The Sixties



I was reading what Drew wrote here about the late 80s, about how in ’88 people were into the new dance music or the newish indie dance (or indie shuffle) and how there was some crossover between the two. After getting in from a colleague’s gothic wedding reception last night I slumped in front of a Neil Young documentary. The combination of the two (Drew’s post and Neil Young, not the goth wedding) got me thinking- around ’88 everyone (well maybe not everyone, but y’know..) who was into music was into 60s bands. Not the really obscure, Nuggets garage bands but the then cult bands who’ve since become the 50 quid man mainstream- Buffalo Springfield, The Doors, the Velvet Underground, Love, The Byrds, Jefferson Airplane, Bob Dylan et al. All American now I look at the list. I suppose British bands were there as well- The Stones, The Kinks, The Small Faces. At the time the 60s seemed so long ago. 1968 was twenty years before and we weren’t even twenty yet. In ’87 there was a rash of interest in it being twenty years since Sgt Pepper and in ’88 some media interest in it being twenty years since the events of May 1968. No-one I knew bought cds except one lad who wanted to be the sort of person who bought cds, a yuppie wannabe. The cd reissues of back catalogues hadn’t begun. Funnily, it almost seemed further ago then than it does now, now we’re completely saturated in 60s (and 70s, and 80s…) culture. In ’88 we devoured anything we could find- records obviously (not always easy to get, scouring second hand shops and bargain bins. It took me until about 1995 to find a copy of Neil Young’s On The Beach. Now I’d just download it), but also books, odd magazine references, very occasional clips on TV late at night, two fingers poised over the Play and Record buttons on the video. Without Youtube, feature length documentaries, books and autobiographies, box sets, reissued cds and magazines like Mojo there was so little information, so few pictures, so little source information. What we had was poured over. I knew next to nothing about Neil Young. On chance I bought Harvest on cassette for £4.49 (with that Price Cuts! sticker. Early entry level retro culture) but had no real context to put it in, other than as part of the rest of the stuff I listened to. This sub-cult 60s influenced both parts of what Drew described- the indie shufflers and the dance scene (maybe not as obviously and many of the key players wouldn’t acknowledge it for fear of contaminating the newness, and let’s not forget dance culture led some misguided souls to suggest that ‘the 90s will be the 60s upside down’). I suppose the twenty year rule also explains the current and recent vogue for 80s sounds in pop music. Our youth becomes period drama, as the 60s generation’s youth was for us. The 60s bands had a bad 80s with some terrible records, still recovering from the kicking punk gave them a decade earlier. Since the megatours started most of these bands have played an arena somewhere near you, something pretty unthinkable in 1988, apart from the then 40 something Rolling Stones. The 60s also seems to have become less defined, part of a musical cultural mush that lasts all the way up to punk (and all the punk artists grew up listening to… those 60s bands). I watched the Neil Young documentary last night and there was a clip of Buffalo Springfield playing Mr Soul on US TV. Electrifying. I would’ve killed to have had instant access to this in 1988. I suppose the technology is a good thing, but part of the thrill in the late 80s was the chase, the constant looking for stuff, seeking it out and hunting it down, and the heartstopping moment when you found an lp you’d previously only heard about. This is Neil Young doing Mr. Soul live, acoustically, sometime in the early 1970s.

Two pictures, I don’t know why. It won’t let me remove one.

>I’m In Love With Your Daughter

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In 1990 Neil Young reunited with Crazy Horse and released the gloriously ragged Ragged Glory album, which included a cover of Farmer John (originally by 60s garage band The Premiers). Neil and Crazy Horse’s Farmer John is unbelievably good- big, crunchy, stupid, fun.