Friday 21 February 2014

fun times in babylon



Father John Misty - "Fun Times in Babylon"

The Father John Misty album has been on heavy rotation round my way since I bought for my brother a couple of Christmases ago - what can I say, it's the gift that keeps on giving.

Anyway, a thought popped into my head this morning - "Whatever happened to Chris?" 

A little context may be required.

At my school, I wasn't one of the cool kids and I wasn't one of the weirdos. I was more in the middle with friends on both sides - probably the safest way to be.

I was into odd music played by bands with strange names and I liked films and enjoyed reading. Plus I was actually in a band at the time - I played my first gig at a pub in Nottingham (The News House - it looks much nicer nowadays) when I was 14.

Growing up in a staunchly working class post-industrial town, that kind of thing really doesn't impress anybody (it was all about your precocious bum-fluff moustache and your provisional driving licence at my school).

Eventually of course, my ship came in when I got to college. It was here that I basically invented the persona which I carry to this day - The Me That Makes Me Me, as it were.

Basically, this was the archetypal Revenge Of The Nerd. And now I was cool I was going to be snarky and clever and cutting and endlessly sarcastic. Sounds awful but it was actually great fun. Plus I even kissed a girl during this period.

I ended up doing three years at college, eventually getting five A-levels - at the time, no-one tells you just how useless these bits of paper will be in the real world.

Anyway on one of my final year courses I met Chris. He seemed really young (I guess he was) and he was into laughably shit music. At the time I was renowned for my compilation tapes which I used to slave over endlessly - so for some reason I took Chris under my wing (not at all patronising, eh?) in order to show him that THAT was shit but THIS was the good stuff.

(If it's any consolation, I'm embarrassed to write all this down)

We hung out a lot - he even persuaded me to see Pavement's first-ever UK gig, which for some unknown reason was in Derby in 1992. So I wasn't all that cool after all, was I?

Anyway we drifted apart as people do. And in May of 2012, Chris sent me an email out of the blue - he'd been chatting to someone about obscure bands (Beat Happening, Codeine, Galaxie 500) and as my tapes had introduced him to them, I'd popped into his mind so he wanted to reach out. He was living in London but was frequently back in 'the hood' (as we never call it) if I wanted to hook up.

I responded:
what a blast from the past!

great to hear from you - i tried to listen to some Codeine when they announced the reunion dates, jesus they're depressing - it's no wonder i had no luck with the ladies! i was just a big gob with strong opinions about music, not changed much since then.

anyway, you dragged me along to see Pavement's first ever UK gig at the Wherehouse - i think that makes us quits.


life is good, the only dark cloud has been my diagnosis of Multiple Sclerosis about 7yrs ago - doing ok on the whole with it but it's always there - getting old sucks yeah?
... followed by some innocuous guff about being married and the family. I've just read the whole email through and it's fairly light and frothy (apart from the MS bomb, obviously). I think the day I sent the message was one of the first days I was back at work following Relapse 2012, so my health was very much in my mind.

So I clicked send and expected him to get back in touch.

And then nothing.

I'm friends with his younger brother on Facebook (he worked in a cool record shop in town) and last year we had an exchange about some gigs we were going to see*, so I nudged him about his brother - still nothing.

I don't really know why he popped into my head this morning - we weren't that close so it's not as if I'm devastated by his lack of contact. And my MS was quite the turd to drop in our conversational punchbowl.

But it got me thinking about the ways in which different friends have reacted to my illness - and this is not going to turn into one of those YOU DROPPED ME WHEN YOU FOUND OUT ABOUT MY CHRONIC ILLNESS SO NOW I HATE YOU AND I'M BETTER OFF WITHOUT YOU-type posts.

I'm really lucky - the worst that happens is one of my friends pointedly asks me "[pause] so... how are you doing?". It's not that unusual, but he asks it in the middle of a conversation, even after asking how I am at the start, so I know what he's really asking about. Yeah, I know - sucks for me.

At best, when I'm deep in relapse another friend will make a point of checking in almost every day, bringing books / DVD boxsets / music or just dropping by to shoot the shit - all are greatly appreciated.

My point is, I've been incredibly lucky. And it can't be easy for the friends who I've shared time with to adjust to the changes in me - however small I think they might be, I am now fundamentally a different person because of them.

Yes, some people have drifted, but I read something by Oliver Burkeman a while back which said that we shouldn't feel bad about friendships tailing off. Maybe they have a shelf-life - it's ok for that section of your life but not this one. And that's totally natural.

If you're reading this Chris, I hope you're doing ok.

--

(* Me - Shellac. Him - the reformed Pixies, whose original line-up I saw in Nottingham in 1989. See? I'm still a massive nob about music! I'm lucky to have ANY friends!)

Thursday 6 February 2014

privacy settings

I had an interesting conversation with my brother over the festive season, which has been on my mind ever since. But the reason for me finally getting this published was a thoughtful, kind-of related post on SwissLet's blog.

I blog here under the name stevedomino - this is an overhang from my days as a member of Derby's burgeoning still-born "indie" "music" "scene" and my old band Johnny Domino - since then it has been my user name of choice.

(Incidentally, my previous band was called - for reasons too arcane to go into here - The Millers, so for that period I was sometimes legitimately referred to as stevemiller - the days were long, dark and seemingly endless round these parts...)

Anyway, you don't have to be Nancy Drew to find out my actual full real-life name - even if you don't listen to revealing radio interviews (where I also reveal the name of my employer), a quick glance at my Twitter profile will provide the key to my not-so secret identity...

WARNING: this man may crack under questioning
Plus the linked posts which I write for MultipleSclerosis.net are all under my own name.

I have tried to be careful about protecting the identities of people in my life (mostly... when I remember...), particularly my wife. But I know that in the past I have given away such tidbits as this just through being a bit clumsy.

The first MS blog I read which didn't make me want to GOUGE MY OWN EYES OUT was Jackie Zimmerman's MSunderstood (no longer online, unfortunately) - here was a writer who didn't take anything lying down and wasn't ashamed to talk about the (often humiliating) symptoms her conditions threw at her - plus she continues to be a constant force for good in the universe.

The fact that Jackie (and her colleague Dana) used to write in their own names led me to do the same when I started a blog as a way to sift through thoughts in my head which were mostly to do with my health.

Plus I don't know anyone my age (or even in the same basic age-ly ball park) with MS in the Real World.

The idea that the blog would find an audience - however small - was genuinely the last thing on my mind - if it was otherwise, I'd have chosen a blog title without a MILD SWEAR in it.

Somewhere along the way, I became convinced that this was a form of activism - a way of presenting a different face of living with MS than the one which is traditionally in the media.

As such, my logic went, why do it in anything other than my own name? I'm certainly not ashamed of having MS, nor am I particularly shy about "coming out" in person.

Now I know that there are many MS bloggers - certainly more popular and entertaining than I - who write behind user names and avatars, which is entirely their prerogative.

And I don't judge in any way, nor do I assign my own potential paranoias or shames to them. God knows, I know that I'm my own unique mess.

Anyway, over Christmas I was talking to my brother and he said that he'd read something on this blog, and that he thought it was weird that I would put it out there in the public domain for strangers to read. Why didn't I just talk to people?

(He also totally doesn't get Twitter)

And for some unknown reason, the fact that he'd been reading the blog royally weirded me out and I didn't really know why.

Was it just because he's someone that I know intimately in real life?

It's not as if this blog is a no-holds-barred literal representation of every crappy symptom and/or humiliation, because (a) that would be dull and depressing, and (b) there are some things which I'm uncomfortable being "out there".

So, it turns out that in some ways, blogging under my own name / image actually prevents me from being as honest as I could be about my MS.

(Weirdly, this was not the conclusion I expected to come to when I started writing this post!)

Anyway, my brother said that he didn't want to appear on this blog. So apologies, dear brother...

... although I did say at the time that I would use the conversation we were having in a future post.