corrections and clarifications

Lesson 1 - IRONY doesn't really work online. Certainly not in 160 characters.

When I posted last time that the Internet can be an amazing thing, I didn't mean it without qualifications. I think it would've been better if I'd said "an awesome and terrifying thing".

Yes, the social media stuff is amazingly positive, and the fact that the means of production are within everyone's grasp means that people don't need to feel as isolated as they otherwise might.

However, this also means that... the means of production are within everyone's grasp. So basically anyone anywhere can say anything that comes to mind. Without any credentials whatsoever.

I'd hate to think that anyone (least of all the divine Ms. CrankyPants) thought I was sneering at people for following an unconventional diet. If it works for you, go forth and be healthful.

As I said, when I was first diagnosed my neurologist told me to avoid the internet, and I think he was right to say this up to a point. Too many miracle cures and horror stories and shysters.

And God knows, since diagnosis I've tried everything from the sublime (CBT) to the borderline-ridiculous (Reiki).

At the point of diagnosis, we're all really vulnerable. We sucker for the miracle cures, because we all want one - it's only natural to need to believe that one day this is all going to go away!

Anyway, the folks at Shift.MS picked up on my post and pointed me in the direction of this document from the MS Society - "I’ve got nothing to lose by trying it: Weighing up claims about cures and treatments for medical conditions" - it's a really good read, perhaps a bit (necessarily) cautious but good nonetheless.

MS is such an ephemeral condition. A common complaint from PwMS in online communities is that "regular people just don't understand".

And while that might be true, I don't think we've ever really been able to come up with a watertight definition, mostly because no two people get it the same. My main list of symptoms would be:

• sometimes I get physically and mentally exhausted. But often I'm ok.
• sometimes I can barely move my legs. But sometimes I'm ok.
• sometimes a whole new symptom might rear up to bite me on the ass. But not often enough to be gut-wrenchingly terrifying.
• sometimes I'm terrified of the future. But mostly I'm ok.

And I've heard (and *whispers it* said) the line about "I have MS but it doesn't have me".

(I'm not proud)

This is a nice idea but you know what? Sometimes MS has my ARSE on a platter - and there's not a damn thing that I can do about it - regardless of any amount of Scrappy Doo-esque bluster. So save it.

I have MS but... ooh actually, I'll just have a lie down for a bit...

It's hard to get a handle on MS and I've never been able to describe (for example) fatigue in any way that makes sense or that doesn't invite the listener to say, "oooh, I know, I get tired too".

(and don't get me started in the bloody Spoon Theory)
.
My point is, if we can't explain our condition, how can we possibly expect the people around us to GET IT without pointing them towards a THIRTY-SIX page document, no matter how well put together?

The online community is comfortable and comforting because the vagueness and fuzziness is shared. There's enough commonality so that we can say that we get it.

But if we only ever talk to ourselves we're doomed to basically eat our own tails. And that's not massively healthy or helpful or proactive.

the gullible cynic

The Internet can be an amazing thing - especially if you have an illness like MS.

Most importantly, you can find somebody, somewhere who will have already written about any symptom in order to back up ANY half-baked theory you might come across in the course of your day!

Exhibit A
I've stopped having Cow's milk in my cereal, shifting to a Soya alternative (quite nice actually) after reading various things about a link between MS and Lactose Intolerance. But the thing that finally convinced me? Well, that was finding a web page (which I can't find now!) which said that the cheese-making process actually removed the lactose - so I can still eat cheese! Result!

I do actually feel quite a bit better, it has to be said - much less slovenly and my memory (for work stuff) seems to be better (still SHIT at home, mind) - but that could be due to any number of reasons:

• I genuinely love the autumn - Jumpers! Comfort food! Bright crisp mornings! Cardigans!!
• I've recently doubled my Vitamin D3 intake to 2,000 IU.
• I've walked into work for the first time in AGES on a couple of occasions in the last week - it was lovely (see first reason above).

So it could be the Soya or it could be... I dunno. Just good vibes?

I even recently picked up this article about Bacteria in soil having a link with MS - bizarre and I DID eat soil as a child...

When I go home to talk about this stuff, my wife just rolls her eyes - "oh, what have they decided this week?"

And it DOES seem that there's always something new which is put forward as a theory - hopefully something which can make you feel quilty - "are YOU eating enough LIVER? Tut-tut"

Call me a wet liberal but I like to think we should, as a species, be moving beyond the idea of OFFAL as a food choice. I know it's supposed to have loads of good stuff in it but when you think about what a liver actually does... just *ick*.

I always come back to when I was first diagnosed, when the neurologist who called it what it was told us to stay clear of the Internet.

There are some totally valid sources of information - MS Trust, MS Society, Shift.MS - but even here there are open forums where people can sound off about their individual symptoms and have a good old moan (a long-standing pet peeve of mine) - and even play DISABILITY ONEUPMANSHIP BINGO. Brilliant!

But my absolute favourite thing about the Internet is currently Twitter - I can't even put into words what I love about it, but in the last few months I've had many chats with people - some newly diagnosed, some old-timers - not to be the "Big I Am" but just going back to my idealistic view of solidarity and LOOKING OUT FOR EACH OTHER.

(I still hate the #MSsucks hashtag, however...)

Anyway, I organise my feeds into two lists - the full list of those that I follow, including musicians and hopefully amusing celebrities, and one called Real People - these are people who I interact with regularly or have even *gasps* met in the Real World.

One of those Real People is Abigail Budd and earlier today she posted a link to another new study which says that "measuring the walking speed of multiple sclerosis patients can help doctors assess progression of the disease and the severity of disability". It then goes on to give an idea of what level of disability can be expected based on walking speed.

I flipped out (mildly - I am at work, after all) - how is that study useful to someone who has been recently diagnosed, or even to someone who has been diagnosed for years? As Abigail said to me, it's not offering much in the way of hope or disease treatments.

It's effectively just giving a new yardstick to measure how difficult your life is / is going to be. I have visions of people with MS walking around with stopwatches. And what's going to happen if they can't manage the desired time on that particular day?

Are we so out of ideas that we're each going to turn into our own personal ATOS? The current UK government would probably call that an "empowering decentralisation" or something.

As is so often the case, I don't really know where I'm going with this (and I am hungry) - but we need to be careful about what we choose to believe (obviously).

Just like me with the thing I found about Antihistamines or my ridiculous Lactose rule - if it had meant cutting out cheese, I'd never have even considered it (wish I could find that website, though...).

My problem is that I'm a very gullible cynic - I try to take everything with a pinch of salt but like my canine friend says...



[edit: see my follow-up to this post, corrections and clarifications]

despite all the amputations

I've said it before elsewhere and often, but this is my blog and I'll repeat myself if I want to!

The Smiths were a band who, from the age of 11 to 16, meant the world to me. To this day, when I listen to 'How Soon Is Now?', I'm immediately transported back to my bedroom in my parents' house - picture this: I'm a borderline pretentious brat and I'm revising for my English Mock Exams.

There has never been and will never be a band who meant - and continue to mean - so much to me as The Smiths did then. Despite the amount of guff that Morrissey continues to spout.

However, my favourite band of all time is The Velvet Underground.

Over the course of their four officially released albums, they expanded the vocabulary of rock music - literally changing the sorts of things that rock bands could talk about, and sonically, changing the musical tools they could use to say it. From baroque art-pop to rabid bludgeoning noise to inner-city portrait chamber poetry to perfect rock-pop songs in four albums.

Plus they wrote the book on how a cool band should look.

But I think the main thing they brought to the party was, they were the first rock band to say NO.

I was talking to my wife about the story that when they first started, they had a regular gig in a New York coffee shop. The manager of the place told them that if they ever played The Black Angel's Death Song again, they would be fired on the spot.

So they did (an extended version at that). And they were.

My wife said, 'but what did the manager expect, saying that to a band?'

The thing is, before the Velvets, rock bands were grateful to be there and they said 'yes'.

I love the Beatles, but they were nice company guys you could take home to meet your mum, even with the drugs and the hair. And probably because they went to the right schools, even the Rolling Stones were viewed as naughty little boys at the height of their drugs-bust infamy.

The Velvets and Lou Reed were legendarily ungrateful, contrarian and curmudgeonly, and the POWER of young people being ungrateful and demanding the stage, saying NO as soon as F*CK YOU, led (directly and indirectly) into all the great musical genres which have followed.

And don't think that NO is necessarily a depressing or difficult word - Lou Reed and the Velvets' "no" was a positive and powerful statement of intent, it was a question as well as a rejoinder, a position of power.

An opening-up of options rather than a closing-down of negotiations.

Lou Reed has died at the age of 71. He's kind of been the poster boy for grumpy old musicians in recent years, and I still can't get my head around the album with Metallica.

But maybe that's my problem - to be his age and still be questing for a new expression of the art he saw and heard in his head - that's something we should be so lucky to aim for.

RIP Lou Reed
2 March 1942 – 27 October 2013

back to more health-related navel-gazing soon!

none so blind

I was introduced to the writing of Douglas Coupland at exactly the right time .

I was midway through my degree and I'd realised I was going to come out more-or-less unemployable, I was living in a house with people who were developing some serious Class A drug habits, and I was winging my way towards a mid-20s breakdown. Because of that, I was ripe for the picking when I first read Generation X.

It's been a while since I've bought one of his books on faith - the law of diminishing returns seemed to set in - but I've got fond memories of Microserfs, Life After God and Girlfriend In A Coma in particular.

The other weekend I read a review of his new book (which got a pretty thorough kicking). It made me go back to another of his old books, Eleanor Rigby.

I read it shortly after it was published and I can't remember thinking much of it at the time. But I did remember the basic plot of a lonely 42-year-old woman who gets a phone call from the hospital, asking her to come and visit a young man who has her listed as his 'contact-in-case-of-emergency', and who turns out to be the son she gave up for adoption twenty-odd years previously. 

Oh, and he's got Primary Progressive MS. 

Re-reading it this last week, I enjoyed the book but the problem with his books is that they tend towards the self-parodic - the characters talk and think like the characters in a Douglas Coupland book, full of hip and zeitgeist-y pop-culture references. And they're prone to wallowing in an endless quest for greater meaning and/or spirituality in Godless times.

My main issue was that the character with MS - Jeremy - was obviously slated for tragic death, but this was offset by his charm and wit. Plus he had the benefit of having VISIONS, and the skill of singing songs backwards perfectly, because he's special.

So anyway on one level, the portrayal of MS is good because Jeremy is so comfortable with his condition, which is always labelled as Primary Progressive MS. But on the whole, I don't know why Coupland chose to make Jeremy a PwMS - what's HIS relationship to it?

 

I'm (naturally?) a bit uncomfortable with MS being used as a plot-device (think about it, it will always end tragically in any kind of fiction).
My favourite bit was this joke, which Jeremy tells to a guy who has just given him a job selling mattresses - at which Jeremy is obviously a NATURAL (see: special):

Jeremy asked, "How many people with MS does it take to put in a lightbulb?"

Ken did not know how many.

"Five million - one person to do it, and four million nine hundred and ninety-nine thousand nine hundred and ninety-nine to write depressing online web-logs."

The terminology is nicely dated (who says 'web-logs' anymore? Ah, the early noughties!) but I think it still applies... *ahem*.

Now interestingly (or not), the book came out in 2004 - which was the year after I'd had what I now see was an attack of MS symptoms, and the attack which set me on the road to my diagnosis. Seeing as I had pretty much all of these symptoms (listed in the book) at some point the previous year, why did I not make the link?

It's strange looking back that I didn't even make a SUBLIMINAL link to the symptoms that were bothering me - I'd had varying levels of numbness for at least 2-3 years by this point.

It's either me being a bit thick, or being so far in denial that I had no idea what was going on in my brain.
---
Searching for an image for this post, I came across the beggaring-belief Eleanor Rigby Hotel - the website doesn't say how many single beds there are here.

Really, who would want to stay in a hotel associated with "All the Lonely People"? Even with "crisp white linen and mellow soft furnishings"?

we are fine

the author on stage, September 2013 - in front of an AUDIENCE and everything - credit: Vinnie Ransome

 So the gig went absolutely fine and I saw some people who I hadn't seen in ages. Three headlines:

• it's been ages since my wife has had to find an 'I'm with the band' outfit - she had no idea what to wear!
• the indie-pop world is considerably LOUDER and much more MUSICALLY PROFICIENT than it was "back in the day".
• bass guitars are heavy. And playing a gig with one round your neck is quite tiring.

This last weekend was the return of the arts festival that the place where I work helps to organise (with other partners in the city).

(I swear I've rewritten that sentence three four times and that's the best I can make it today!)

You may remember I mentioned it last year. Anyway, the event was fine and we've had no adverse comments or complaints YET, and if anything it was even better-attended than last year.

*pats self on back*

Anyway, it's paid for by public money so we have to have a launch event with drinks and speeches and THE LIKE (I'm not important enough to make a speech myself, obviously, but still - CULTURAL ELITE).

Because the events on Friday involved a lot of walking, I obviously took my walking stick.

Which meant that I had FIVE instances (within 30 minutes) of people coming up to me and asking me what had happened.

Now regular readers will know that I'm not exactly shy about it (rightly or wrongly) - if people ask me, I'll tell them. Let's see how it went:

#1 - representative of the major funding body for the festival
HER - so what's happened?
ME - oh nothing's happened, as such. I've got Multiple Sclerosis, I need to use a stick every now and again
HER - [quite nervy and unclear way of asking the same question again]
ME - like I say, I've got Multiple Sclerosis...
HER - [changes the subject]

ENDS

#2 - artistic partner in the festival
HIM - so what's happened?
ME - oh it's nothing new! I've got Multiple Sclerosis...
HIM - [looks a bit teary, gulps for air]
ME - It's ok. Well, it's not, I guess. It is what it is...

ENDS

#3 & #4 - (seperate but pretty much interchangeable) artistic partner in the festival / ex-councillor
THEM - so what's happened?
ME - oh it's nothing new, I just need to use this every now and again [translation: all the time]
THEM - are you sure?
ME - yeah, yeah, it's FINE!
THEM - are you SURE?
ME - it's FINE.

ENDS (NOTE - this conversation is probably still happening right now in a parallel universe somewhere)

#5 - partner who I've been working with off and on for the past 10 years
HER - you alright Steve? What's with the stick?
ME - oh I just need to use it every now and again... And it's really great for pointing stuff out [points into middle distance with NHS-regulation walking stick]
HER - cool!

ENDS

Man oh man.

I don't know if I'd go so far as to say that "Hell is other people" but surely one circle of hell has to be:

"genuinely nice people being concerned about your health in social situations where you don't want to completely bum them out but you also don't want to feel like you're lying to them"

But then - as is increasingly obvious - I'm not much of a writer.

i'm dancing in the show tonight

Long time readers of IASB will know the reason for the blog's title. Even so I can sometimes forget that it contains a (what I would call) MILD SWEAR.

So I was surprised to have a twitter conversation with a representative of a national MS charity, saying that they wouldn't be able to RT one of my last blogs because as a corporate charity, they need to protect their brand. 

Fair enough - I'm the brand and grammar fascist where I work so I can appreciate where they're coming from. 

Anyway - thanks to the MS Trust (amongst others) who did retweet it, swears and all...!

Back in the days when we were playing in various bands and writing songs, I held the valuable position of recordist. Out of all of us, I'd had the most experience of using 4-Track Studios - I know, it seems so bizarre to think that now I've got a 4-Track recorder, a 16 track studio, and GarageBand ON MY PHONE but still. 

Rather than going out and getting wrecked, we would stay in, think up a band name and write and record songs for them as quickly as possible. It was great experience and really helped me to learn how to get good sounds from some cheap and crappy bog-standard equipment. And working within the limitations was a really good way of working.

Listen to the Shithouse Masters for what I think are the best examples of this stuff. But eventually everything Johnny Domino released was recorded in my home, which is pretty cool.

I'd also record things for friends, and one of those was my old friend Brian. He was the mental drummer in one of our old noisy bands but he also had a taste for the twee-er side of Indiepop - the kind that was typified by bands like The Field Mice and the rest of Bristol's Sarah Records label. 

It wasn't really my bag but I used to record their stuff - and as other members came and went, I ended up assisting with arranging songs and playing a variety of instruments. 

Brian was always really plugged into the international network of fanzines and cassette labels (pre-internet, obviously) and through various friends and contacts, that band - Peru - has had a bit of a second life. Two years ago, a label in Canada got in touch wanting to press a CD of songs so I was given the task of 'remastering' them (the guy pressing up the CDs really spanked them so they sound pretty dire despite all my work - but these files sound just peachy). 

Anyway, Brian put together a new line up of the band which has been playing to audiences ever since. A couple of months ago he got in touch to say that they'd been asked to play a festival in Nottingham and their new bass player had double-booked himself. As I'd recorded and played on most of the songs that are in the set, Brian asked me if I'd be willing to fill in. 

I was chuffed beyond measure to be asked, so next week I'll be taking yet ANOTHER opportunity to show off!

And unlike the intense rehearsal process for my appearance at IndieTracks two years ago, we'll be lucky if we manage one run through before the day...

No bother!

damn fine

When two separate evens occur simultaneously pertaining to the same object in enquiry we must always pay strict attention.
- Dale Cooper 

God, I loved Twin Peaks - in the UK it was broadcast on Tuesday nights and I always remember that every Wednesday we'd all pile on to the college bus saying "did you see it? what did THAT mean? what did THIS line mean??" Excellent music, too.

Happy days - anyway, there is a reason why the above quote popped into my head.

Where we live, we have two neighbours - they're both (fairly young) grandparents and they live alone. A couple of weeks back, in the intense heat, they got together to sunbathe and to indulge in some pretty  high-octane flirting.

Now I'll stop you right there! I have no problem with older people flirting and getting jiggy - it was just that they were so awkward and plus they got HEROICALLY drunk while they were doing it. They could've been the youngest, buffest, most beautiful people in the world but still, there's nothing worse than hearing drunk people of any age trying to cop off with each other.

Anyway, we don't judge. And even though we have a child, we're not like Grandma Moses or anything - we don't mind a bit of noise, it's only natural. But the walls are thin and there have been a couple of occasions when it has gotten ridiculous.

CASE IN POINT: earlier this week - on WEDNESDAY (the international party night), they were playing music ridiculously loud to the early hours. They stopped when we banged on the walls (and no-one likes doing that, do they?) but I'm struggling to stay focused at work as it is (as you can tell by the fact that I'm typing this at 4pm on a Friday...).

But the lack of sleep turned me into a basket case the following day and my legs get incredibly immovable when I've had a stressful night.

Aside from anything else they both know about my health and have seen our daughter - so they know what we're dealing with. With all that, their selfishness was the most upsetting thing about it.

So imagine my surprise when I saw this article in my Twitter feed, about how sleep plays a key role in the production and repair of Myelin.

"Disturbed sleep may aggravate perhaps the symptoms of [Multiple Sclerosis], in a vicious cycle"

Now it's not rocket science that rest and recuperation can play a part in maintaining our health and it's a particular type of sleep that seems to be the most beneficial but still, it's interesting so I thought I would share with you.