remembering live music no.2

Pixies, Rock City Nottingham, April 25 1989

Picture young Steve, aged 15, attending only his second ever gig, going to see what was at that time his favourite band. Live music after this point was basically ruined for me.

My (older) brother had seen them play the previous year and we'd got tapes of Come on Pilgrim and Surfer Rosa. Obsessed.

Excitement was only increased by their second Peel session (which I taped, obviously) and this awesome appearance on SNUB TV (which we kept on video until the tape wore out) - I remember telling people at school to watch it.



How can people who look so ordinary - square, even - make a sound so wild? Look at their little faces, they look almost embarrassed to be on TV. Kim had only just stopped going by the nom de disque Mrs John Murphy. Couldn't Black Francis get a clean top?

In advance of the release of Doolittle, John Peel was playing a different song every night on his Radio 1 show. I'd even managed to get hold of a one-sided promo record with four songs on it. I was primed and ready to go.

Which is why it's so disappointing that I can remember so little about the gig!

• They started with "Into The White" which hadn't been released at that point. It had a very literal (and blinding) light show.
• Early in the set they played the (similarly unreleased) UK Surf version of "Wave of Mutilation" - I was convinced they were playing it so slowly because they were f*cked off - too many cries of "You fat bastard" from the more *excitable* and *refreshed* members of the audience?
• "No. 13 Baby" was the only song from Doolittle I'd not heard before I got the album the week before this gig. It's still my favourite track on the album. The light show was awesome for the long instrumental coda.
• And regardless of what Setlist.fm says, I have a vivid memory of them playing "Vamos". Joey Santiago playing much of the solo with a beer can as a slide - and I've just remembered he had a teeny tiny guitar amp!

Kim was pretty much the only Pixie to speak to the audience ("Thanks!" and not much else).
Regardless, I do know that they were bloody brilliant. So loud, so incredibly tight and just completely on it.

A few short years later they were hanging out with Bowie and U2, barely speaking to each other and having band promo pictures taken in their sunglasses.

remembering live music no.1

Do people really need another blog about living with MS in the times of COVID-19? Thought not!

Kind-of inspired by those Facebook posts about "10 books / albums / *delete as necessary that made me", I'm going to be posting about the best gigs I ever saw.

Why? Because reasons. But mostly as a reminder of something which none of us will be doing for some while.

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Lemonheads, Trent Polytechnic, Nottingham, May 23 1990

The Lemonheads in 1992. Photograph: Ebet Roberts/Redferns

Starting off with a gig which I still maintain is the best I have ever seen. This was in a tiny room just next to the student bar at the old Trent Polytechnic, like a glorified recreation room. It was a glorious summer night and I went with my brother and my first actual girlfriend.

The Lemonheads (or as my gig ticket had it, The Lemon Heads) had recently trimmed down from a fractious five-piece line up to the classic power trio which would go on to record Lovey. At this gig they played stuff that would show up on that album, along with loads of songs from Lick (in my - unreliable - memory they started their set with Mallo Cup). 

They played so long that after a handful of encores Evan Dando said they didn't have any more songs. But the audience wouldn't let them off the stage (the room was so small that they had to push through the front rows to get on and off the stage).

Eventually Evan Dando said (and please remember that I'm paraphrasing based on my aged fading memory so I may have totally misremembered / embellished it all), "I wrote this song today, and after this we've got nothing". He then played a solo version of Ride With Me, still one of my favourite Lemonheads songs.



Like I mentioned earlier, if I ever had to say what was the best gig I ever saw, this was it. It was just a great example of the "simple" pleasure of great songs played well, and the unmistakeable heft of classic power trio. Plus the feeling when you're at a gig where everyone is loving it, and you're all there before a band goes supernova.

"I was there", indeed.

FUN FACT: Lemonheads are also responsible for the worst gig I ever saw. This was in Sheffield on the Car Button Cloth tour with Murph from Dinosaur Jr on drums. This was (I *think*) 1996-7 and Evan was deep into his crack years. Not pretty.

He encored by turning his back on the audience and feeding his guitar back for what seemed like 15 minutes.

Challenging. And more than a little sad.

my superpower is resilience

Recently, there has been a lot of talk about how people with chronic illnesses are uniquely made for life during times such as these.

• Self-isolation? All over it.
• Living with medical and health uncertainty? Only for the past 15 years.
• Dealing with precarious times, when you're unsure how long the status quo is going to last? Well, duh. Where've you been?

Sometimes these posts have been subtitled Welcome to our world. And it's hard not to take some pleasure from this idea. Especially when 'people with underlying health conditions' are viewed (and described) as being only slightly above 'red-shirt-wearing Star Trek characters' in terms of current expected lifespan.

- Don't worry, men. I'll make sure you get a decent funeral
- Which one of us are you talking to?
- Erm...

However, there are better reasons than our wonky genes as to why we might be prepared for living through a pandemic. And I prefer to focus on the fact that we're resilient.

We've had the shit kicked out of us. We've been forced to face up, not only to health challenges but also to being seen as disposable benefit-scrounging wastes of space. And we're still here.

We're used to adapting to whatever is thrown at us. Whatever new indignities our conditions bless us with.

In short order, my own trials include (but are not limited to) increasing reliance on a range of mobility aids and intermittent self-catheterisation (relax girls, I'm married).

We're old masters at getting to our feet when life thinks it has knocked us out.

And we're more than used to coming up with new ways of achieving our goals and dreams when the 'normal' route is no longer open to us.

Our adaptability and hard-won stoicism means we can be bloody tenacious. We know that (as I've quoted before):

We may be powerless to alter certain events, but we remain free to choose our attitude towards them

Other reasons we're ahead of the curve.

• We loved the NHS even before it was cool and / or mandatory.
• We've always appreciated delivery drivers, service workers, helpful shop assistants, the kindness of strangers.
• Online shopping is my only kind of shopping

In other news, I don't know about you but on the whole, everything seems really, weirdly normal.

Me and Mrs D tend to get through the days, trying to make sure Little Miss D is happy, fed, entertained. But even with everything we're doing (or not doing) it all just seems totally normal.

It's only when we sit down at the end of the day to watch our self-prescribed limited news coverage that it hits us that we're living through the scariest, strangest times.

Take it easy out there indoors.

old news

So. I got my PIP award. Actually, I got notification the day of my last infusion over two weeks ago. But the world has since gone to hell in a handcart and it just seemed too trite and small to bother writing about.

I got the same award as previously, but this time it's for 10 years. The guy from the Citizens Advice Bureau (who helped me to fill out my form) contacted me to see if I wanted to appeal - when we met he thought that I was entitled to the enhanced rate for both Everyday Living as well as Mobility.

I decided that I didn't want to risk losing the whole thing. Plus I knew by then that some serious shit was in the pipe as far as Coronavirus was concerned. For my own self care I figured that I'd have enough to fight without adding anything extra.

So the whole PIP thing seems like a problem from a more innocent time.

Last week was our first with Little Ms D since UK schools were closed. And although self-isolation is almost second nature to me (as it is for most people living with disabilities / chronic illnesses), it hasn't been without its difficulties.

And that's only bearing in mind logistics of child care, education and getting food (i.e. up until last Saturday, we couldn't). It's also been psychologically tricky to navigate. We're all in the same house, all of the time.

But I guess it's the same all over. And we have friends and family who're all struggling, and - strangely - this makes us all feel better.

However, this virus is bloody scary. Coupled with the fact that the government guidelines continue to change on a daily (sometimes hourly) basis. Also, nobody knows how Covid-19 interacts (or doesn't) with MS medication - things seem to point towards Tysabri being one of the least dangerous options (which is not to say that it's not without risks!) And I did get a call from the MS Nurses recently to double-check that I was coming for my next infusion. So time will tell.

But no matter. We have a new messiah.

Joe Wicks was someone that I'd only heard of in passing but now his P.E. With Joe daily workout is an essential part of our weekdays. Cometh the hour and all that.

social responsibility and hygiene

I started writing this post while sat in what should, by rights, be the safest space in the country. The infusion ward at my local hospital.

If basic hygiene isn't being followed in a room where people are receiving treatment for cancer and respiratory conditions, as well as MS, then we're all going to hell in a handcart.

There's no denying that it has been a weird couple of weeks. At present there doesn't seem to be much happening with Coronavirus in the U.K., apart from people washing their hands. I can't help feeling that a more complete shutdown is only around the corner [see last minute edit below].

I've had the dried and cracked hands of the excessive hand-washer ever since I started self-catheterising. Let's be honest, when you're putting a plastic tube up your junk, you definitely want to be sure that you've got clean hands.

If the only thing that comes out of the Coronavirus pandemic is that people finally get it into their heads that hygiene is for the general good... well, that might be a good thing. As Mrs D said earlier today, maybe people will start listening to actual experts. Imagine that!

I'm currently reading The Death of Truth by Michiko Kakutani. It's a couple of years old but one of its key points - that we're living in a time where every opinion or source of news is viewed as equally valid as the next - still holds true. It's like how racist politicians in the U.K. are regularly given a platform on mainstream TV and news to expound their toxic views because "that's just their opinion".

I'm only two chapters in but it's pretty striking how this sort of postmodern blanket validity, far from being some utopian libertarian ideal, actually plays into the hands of autocratic despots and fascists. Expert opinion can be simply ignored - see also climate change deniers, flat-earthers and anti-vaxxers.

Similar to the anti-vaxxers, I've heard some people saying that Coronavirus won't affect them because they're young with no underlying health conditions. I hope they learn before it's too late that these measures - vaccines, hand washing, self-isolation - only work if we all play along.

It's social responsibility. We all look out for each other. We all play our part.

[edit 12/03/2020 5.28pm] Despite saying that "More families, many more families, are going to lose loved ones before their time", the UK Prime Minister has just announced that he's going to do next to nothing. *slow hand clap*

i don't write to waste my time

As a long-time friend of the blog and Person I've Actually Met In Real Life, SwissLet recently invited me to take part on his site. He sporadically logs his earworms and he wondered if I'd like to have a go.

Really? Asking me to blather on about music? The very idea...

So obviously I did it. And I probably went a little bit overboard, meticulously logging the songs which genuinely appeared unbidden on my internal iPod first thing in the morning all week.

If you need some of that in your brain pan, please visit his blog here. My playlist features D'Angelo, Harry Nilsson, Super Furry Animals, Stereolab, Bonny Light Horseman, The Pointer Sisters and - OF COURSE - Killdozer.

Obviously, I LOVED doing this. So much so that I may do it again (whether he wants me to or not).

pip-pip

And my PIP form is in! After a couple of weeks of pretty intense activity. To be honest it went in the post last week. But y'know. REAL LIFE.

In the first instance we relied on the same sources as previously - the Benefit Advice Essentials Facebook group and our contact from our local Unemployed Workers Centre. All signs seemed to point towards approaching the form as if it was an entirely new application.

Yes, I've gone through the application process before. And yes I can do it again. But it's no one's idea of a good time, especially when you have to fit it in with your workload, hospital appointments, etc. And the thought of the amount of time it would take was beginning to stress me out.

Now several months ago I had to fill in a Work Capability Assessment form for Universal Credit. Around this time, I was chatting to a young woman in the infusion ward about the many hoops that we had to jump through to get the support we were entitled to. She mentioned that there was someone based at the Nottingham Citizens Advice Bureau whose time was paid for (at least part of the week) by the MS Society.

I never contacted him at the time and it turned out that I got the result I needed off my own back.

But for some reason I never deleted his contact details from my phone. So I arranged to go in and see him to talk about my PIP application.

Although I was outside of his geographical area, he said that he could use his own judgment. And the MS Society would prefer him to use his time to support people with MS wherever possible.

He also said that I should bring my form with the evidence I'd gathered so we could fill it in together.

In our meeting he talked for the first hour about everything from council tax reductions to Universal Credit to aids and adaptations, before we even got onto the subject of PIP.

Same as we did for my last application, he approached the form by looking towards a tribunal, getting it as watertight as possible at this early stage.

I should say that he has had a lot of experience filling in (and appealing) PIP applications. He even said that he was involved with the design of the PIP form. The thing about the reapplication form, the boxes are pretty small. So this guy basically scored through the questions that I wouldn't be answering and used the available space to get as much information down as possible.

I mean, who would even think to do that if they were filling in the form on their own?!

He also advised against the prevailing wisdom that this form should be filled in as if you're writing about your worst days. His argument was that, if you fill a form in saying that [for example] you can't get out of bed due to back pain, and then you turn up a tribunal, it immediately puts the rest of your form under scrutiny.

As well as all of this, he said that the fact I was in a relapse during my first assessment (and I then referenced it in my second application) probably wasn't as helpful as we first assumed. The assessor would judge it on a 3 months back, 8 months forwards basis. By that logic they can assume that I'll make a complete recovery and make a judgement accordingly. Interesting!

After going through all the sections and double checking that I was happy with what he'd written, he said that I could take the form home to send it when I got the last bit of evidence I was waiting for. Or he could send it for me as it stood, with additional evidence (a letter from my neuro) to follow.

Obviously I bit his hand off! And the relief was unbelievable.

So now we wait. Again.

Good luck as always to anybody else going through similar trials and tribulations.